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How to Manage the Side Effects of Hormone Therapy

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How to Manage the Side Effects of Hormone Therapy

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How to manage the side effects of Hormone Therapy

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Risk checker

1 in 8 men will get prostate cancer. If you're over 50, or you're black, or your dad or brother had it, you're at even higher risk.

Prostate cancer is not always life-threatening. But when it is, the earlier you catch it the more likely it is to be cured.
Answer three quick questions to check your risk.
Check your risk

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We want to stop prostate cancer being a killer. We fund groundbreaking research, drive improvements in treatment, and fight injustice in care.

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Eating well is an important part of everyday life. However, when faced with a cancer diagnosis eating and knowing what to eat can become difficult. Add to this the overwhelming amount of information available on diet/nutrition, and it can become confusing and worrying. This webpage will provide you with a trusted source of dietary information. It also guides you to the dietetic team at Velindre Cancer Centre and the services they can offer you as a patient here.

https://velindre.nhs.wales/velindrecc/services-a-to-z/nutrition-and-dietetics/

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This page explains how hormone therapy treats prostate cancer, who can have it, the different types - injections, implants and tablets, and possible side effects.

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Abiraterone acetate (Zytiga®) - Macmillan Cancer Support

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Abiraterone acetate (usually called abiraterone) is also known as Zytiga®. It is used to treat advanced prostate cancer.

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Enzalutamide (Xtandi ®) is a hormonal therapy drug used to treat prostate cancer. It is usually used:

to treat prostate cancer that has spread to other parts of the body

when other types of hormone therapy have stopped working.

Enzalutamide can be given alone, but it is usually given with other types of treatment. Sometimes, it can be given before or after chemotherapy. Some people have it instead of chemotherapy. You might be offered enzalutamide if you have already had a chemotherapy drug called docetaxel and the cancer has stopped responding to it.

Your doctor will talk to you about your treatment plan and possible side effects before you agree ( consent) to have treatment.

It is best to read this information with our general information about hormonal therapies and the type of cancer you have.

Hormones are chemicals that our bodies make. Hormones act as messengers and help control how cells and organs work. Hormonal therapies are drugs that change the way hormones are made or how they work in the body.

Prostate cancer needs the hormone testosterone to grow. Most testosterone is made by the testicles. A very small amount is made by the adrenal glands, which sit above the kidneys. Enzalutamide blocks testosterone from reaching the prostate cancer cells. This may slow down the growth of the cancer cells and help control symptoms.

Taking enzalutamide tablets

Enzalutamide comes as tablets you can take at home. Your nurse or pharmacist will tell you how many to take. You take enzalutamide every day.

You may have enzalutamide on its own, or with other drugs. Your nurse or doctor will talk to you about your treatment plan. You usually take enzalutamide for as long as it is controlling the cancer.

Always take the tablets exactly as explained. This is important to make sure they work as well as possible for you. Make sure you:

If you forget to take the tablets, you should take the missed dose as soon as possible within the same day. If a full day has passed, let your doctor or nurse know. Do not take a double dose unless your doctor tells you to.

Other things to remember about your tablets:

Keep them in the original package and at room temperature, away from heat and direct sunlight.

Keep them safe and out of sight and reach of children.

If you are sick just after taking the tablets, contact your healthcare team. Do not take another dose.

Get a new prescription before you run out of tablets, and make sure you have plenty for holidays.

If your treatment is stopped, return any unused tablets to the pharmacist.

Your nurse or pharmacist may also give you other medicines to take home. Take all your medicines exactly as they have been explained to you. Do not stop taking any of your medicines unless your doctor tells you to.

We explain the most common side effects of this treatment here. We also include some less common side effects.

You may get some of the side effects we mention, but you are unlikely to get all of them. If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here.

You will see a doctor, nurse or pharmacist regularly while you are having this treatment. Always tell them about any side effects you have. They can give you drugs to help control most side effects. They can also offer advice to help you cope.

Most side effects can be managed. But sometimes side effects are harder to control. It is important not to stop taking hormonal therapy without telling your doctor. If side effects cannot be managed, your doctor may suggest you take a different type of hormonal therapy.

Hot flushes and sweats

Hot flushes are a common side effect of this treatment. During a flush, your neck and face may feel warm and look red. Flushes may last from a few seconds up to 10 minutes. You may have sweats and then feel cold and clammy. Some people feel anxious or irritable during a hot flush.

There are things you can do to try to reduce flushes:

Wear clothes made from natural fabrics, such as cotton.

Wear layers of clothes that you can remove if you feel hot.

Use cotton bed sheets and have layers of bedding that you can remove if you feel hot.

Keep room temperatures cool or use a fan.

Have cold drinks rather than hot ones. Try to avoid drinks with caffeine in them.

You may have fewer hot flushes and sweats as your body adjusts to hormonal treatment. Or your doctor can prescribe drugs to help. Flushes and sweats usually stop a few months after treatment finishes, but some people continue to have them.

You can read more about coping with hot flushes.

Risk of falls

People taking enzalutamide have a higher risk of falls and broken bones (fractures).

Reduce the risk of tripping by keeping areas you walk through clear. Make sure rooms are well-lit and if you get up during the night, always put a light on. If you feel dizzy when walking, you should sit down straight away until it passes.

Always tell your doctor if you have dizziness or feel unsteady when moving around.

Bone thinning (osteoporosis)

If you take this treatment for several months or more, you may get bone thinning. This is called osteoporosis. This can increase your risk of a broken bone (fracture). You may have bone density scans to check your bone health before and during treatment.

Doing regular exercise, such as walking, can improve your bone health. Eating a healthy diet can help too. Your doctor may prescribe drugs called bisphosphonates to help protect your bones. They may also advise you to take calcium and vitamin D supplements.

Memory and concentration

You may notice changes in your memory. You may also find it harder to concentrate. To help you remember things, try using:

Skin changes

This treatment may affect your skin. It may cause a rash, which might be itchy. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day.

Always tell your doctor or nurse about any changes to your skin. They can give you advice and may prescribe creams or medicines to help. Skin changes usually improve when treatment finishes.

Sexual effects

It is common to lose your sex drive and have erection problems during hormonal therapy. Things often return to normal after you stop taking the drug. But some people continue to have problems after treatment is over. Your doctor can prescribe treatments to help with erection problems. But these treatments will not increase your sex drive.

Risk of infection

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If the number of white blood cells is low, you are more likely to get an infection. A low white blood cell count is sometimes called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. Contact the hospital straight away on the 24-hour contact number you have been given if:

your temperature goes over 37.5°C (99.5°F)

you suddenly feel unwell, even with a normal temperature

you have symptoms of an infection

your temperature goes below 36°C (96.8°F).

Symptoms of an infection include:

feeling shivery and shaking

a sore throat

a cough

breathlessness

diarrhoea

needing to pass urine (pee) a lot, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.
You will have regular blood tests during treatment. If needed, your doctor may reduce or delay your treatment for a short time, until your cell count increases.

Seizures

Very rarely, enzalutamide can cause seizures (fits). If you have a seizure, stop taking enzalutamide and see a doctor straight away. Let your doctor know if you are already taking medication for seizures.

Contact the hospital straight away if you suddenly feel unwell, or have symptoms such as:

Allergic reaction

Rarely, enzalutamide can cause an allergic reaction. Signs of a reaction include:

If you feel unwell or have any of these signs, contact the hospital straight away. Do not take any more of this treatment until you have spoken to them.

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.

You can help reduce the risk of developing a blood clot by:

staying active during treatment

drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

Other medicines

Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

Contraception

Your doctor will advise you not to make someone pregnant while having this treatment. The drug may harm the developing baby. It is important to use effective contraception during your treatment and for a few months afterwards. It is also important to use a condom if you have sex with someone who is pregnant. Your doctor or nurse can give you more information about this.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.

If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.

This information has been written, revised and edited by Macmillan Cancer Support's Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.

Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF's 10 criteria for trustworthy health information.

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Enzalutamide (Xtandi ®) is a hormonal therapy drug used to treat prostate cancer. It is usually used: to treat prostate cancer that has spread to other parts of the body when other types of hormone therapy have stopped working. Enzalutamide can be given alone, but it is usually given with other types of treatment.

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Chemotherapy is a treatment for certain types of cancer using anti-cancer or ‘cytotoxic’ drugs. The drugs help destroy cancer cells (including leukaemia and lymphoma).

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Maggie's Centre - Cardiff

Maggie’s offers the best possible support free to anyone with cancer and their families who walk through their doors. The Maggie's Centre Cardiff is located at the back of the Velindre hospital and patients and their families can drop in the centre at any time with no appointment needed.

Please click on link below to find out opening times and everything Maggie's has to offer ..........

https://www.maggies.org/our-centres/maggies-cardiff/

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Risk checker

1 in 8 men will get prostate cancer. If you're over 50, or you're black, or your dad or brother had it, you're at even higher risk.

Prostate cancer is not always life-threatening. But when it is, the earlier you catch it the more likely it is to be cured.
Answer three quick questions to check your risk.
Check your risk

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We want to stop prostate cancer being a killer. We fund groundbreaking research, drive improvements in treatment, and fight injustice in care.

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Find out about possible causes of cancer, how cancer starts and grows, tests to diagnose it, and general information about treatments.

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Do something Mighty in 2024

Take on a Mighty Hike to support people living with cancer. Choose from 15 routes and challenge yourself to a full or half marathon across some of the UK's most breathtaking landscapes! Sign up today and get 20% off with EARLYBIRD20.

Do something Mighty in 2024

Take on a Mighty Hike to support people living with cancer. Choose from 15 routes and challenge yourself to a full or half marathon across some of the UK's most breathtaking landscapes! Sign up today and get 20% off with EARLYBIRD20.

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Macmillan Cancer Support | The UK's leading cancer care charity

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Macmillan Cancer Support is here to listen, support you through treatment, and help with money. We fundraise so we can do whatever it takes.

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At Velindre Cancer Centre we have a range of therapy services that you may find beneficial for your health and wellbeing. If you would like to be referred to any of the services below please contact your keyworker (Clinical Nurse Specialist) or Navigator to arrange.

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Following illness or stress, people will very often be left in a state of imbalance, short of vital energy which can prevent the body and all its complex individual systems from functioning effectively.
Complementary Therapies can help restore the body's natural equilibrium and balance and when people are relaxed it is very much easier to cope with the everyday stresses and strains life throws at us.
How Complementary Therapies may be helpful:

Encouraging relaxation

Relieve non-clinical levels of anxiety

Easing low mood

Improving sleep patterns

Easing stress

Improve well-being and quality of life

Live with an altered body image (massage)

Manage procedural anxiety

Easing symptoms such as breathlessness, constipation, diarrhoea, pain, nausea and fatigue.

What treatments are available?

Reflexology

Aromatherapy

Reiki/Healing

Massage

Indian Head massage

Therapeutic massage

Mindfulness/ Visualization

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Physiotherapists are experts in finding the best ways for cancer patients to be active, improve independence and enhance quality of life. This may involve exercise programmes or advice on everyday activities. With some cancers, research has shown that being active can reduce the risk of it coming back and increase your chances of surviving. Specialist physiotherapists can also help with problems and possible treatment side effects such as pain, fatigue and breathlessness. For cancer patients of working age, physiotherapy can help you gain enough strength and mobility to return to work.

Physiotherapists deal with human function and movement and help people to achieve their full physical potential. They use physical approaches to promote, maintain and restore wellbeing.

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Velindre Cancer Centre offers a range of supportive services that include individual and group sessions aimed at promoting your emotional and psychological wellbeing.  Our dedicated Supportive Care Team can also provide support for your family, in addition to help with financial, spiritual and religious needs. Please see tab below for further information and contact details.  If you feel that any of the services below would be helpful to you and want  to be referred or would like  more information please get in touch with your keyworker on telephone number 02920 615888.

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What is Radiotherapy?

Radiotherapy can be used for treating cancerous and non-cancerous (benign) tumours.

How does it work?

Radiotherapy uses high energy X-ray photons carefully calculated to target a specific area of the body. The X-ray photons cause damage to the cell's DNA in this area. Healthy cells have the ability to repair, whereas cancer cells cannot recover.

Radiotherapy is given over a number of treatments, to allow healthy cells a chance to recover. Each patient's treatment schedule is different, your doctor will explain your treatment schedule to you.
Correcting the myths

Radiotherapy does not hurt

There is no 'zap', 'jolt' or 'electric shock' seen or felt

You will not be radioactive after treatment

You will not pose a danger to children or pregnant women

Hair loss only occurs in the treated area and is not always permanent

Treatment Planning
See planning video
Radiotherapy is individually planned for all patients based on a CT scan of the area of the body being treated.

Supportive equipment is used to create a reproducible position that can be replicated each day for treatment.

You will be given small tattoo marks (see photo) which are used as reference points for daily positioning.

If undergoing Head and Neck Radiotherapy, you will have a mask made. This is worn for your CT planning scan and every treatment session. See making the mask video.

There is normally a few weeks in between the planning appointment and the start of treatment.

Treatment delivery
See Treatment procedure video
For each treatment session, you will be positioned as you were for your planning CT scan.
Your tattoo reference marks will be used to ensure correct alignment. This is achieved using light lasers in the treatment room and movement of the treatment couch.

Once the radiographers are happy with your positioning, they will leave the room. They may then take images to confirm that you are in the correct position before treatment delivery.
Imaging is repeated regularly during treatment for positioning purposes, unfortunately we cannot assess treatment response from these images.

The machine is controlled remotely from the control area outside the treatment room. You are observed at all times on CCTV and intercom can be used.

Treatment can be interrupted if you need to stop treatment for any reason and can then be resumed.
Appointment times vary between 15 minutes to an hour depending on the treatment you are receiving. This will be discussed with you.

On Treatment Review

You will be seen regularly throughout your treatment in the review clinic.
The review and information and support team are a specialist team of radiographers who can assess and manage Radiotherapy side effects.

They can prescribe medication to help side effects of treatment and discuss any emotional and practical concerns you may have. They can also ensure appropriate referrals to supportive services are put in place should you require them.

Site specific booklets are available which includes information about treatment side effects. These can be found in the information leaflet section of the website.

Useful contact numbers

If you are currently on treatment please contact your treatment machine - their telephone number is on the front of your treatment appointment card. Or contact Radiotherapy Reception on 02920615888 ext 6434/6433 available 8am-6pm Monday to Friday.

You can speak to the Review and Information and Support team regarding any treatment related side effects on 02920615888 ext 6421 available 8.30am-5pm Monday to Friday.

If you have not started your Radiotherapy treatment and have questions regarding appointments please contact Radiotherapy Booking on 02920615888 ext 6134/6836 available 8.30am-5pm Monday to Friday.

For queries regarding planning appointments, please contact Radiotherapy Planning on 02920615888 ext 6150 available 8.30am-5pm Monday to Friday.

If you are unwell outside of these hours or over the weekend, please contact the Treatment Helpline 02920 615 888 (available 24/7).

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Radiotherapy can be used for treating cancerous and non-cancerous (benign) tumours. Radiotherapy uses high energy X-ray photons carefully calculated to target a specific area of the body. The X-ray photons cause damage to the cell's DNA in this area. Healthy cells have the ability to repair, whereas cancer cells cannot recover.

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Radiotherapy Planning session Velindre Cancer Centre

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This booklet will help you understand what will happen when you come to Velindre hospital to have radiotherapy treatment.

The booklet will explain how your treatment is planned and given. It will discuss side effects you may have and will tell you how to get more information and support.

A glossary is provided at the front of this booklet to help you understand any words that you may find unfamiliar.

Contact telephone numbers are given at the end of the booklet.

We hope this answers your questions. Please ask us if you have other questions that we have not covered.

Please bring a list of all the medication you are taking every time you come to Velindre.

Patient information is available on the Velindre website
Please go to: https://velindre.nhs.wales/velindrecc/

Smoking is not allowed within the grounds and inside Velindre hospital. If you need help giving up please ask us.

This information is evidence based and is reviewed annually

Glossary of terms

CT (computerized tomography) scanner - a machine that uses x-rays to take detailed scans of your body

Linear Accelerator (LA) - a machine that uses high energy radiation to give radiotherapy treatment

Physicist - a person who does the technical planning of
radiotherapy treatment

Dietitian - a person who helps patients to choose the best food to keep them healthy and strong

What is radiotherapy?

Your doctor has decided you would benefit from a course of radiotherapy treatment.

Radiotherapy is a treatment for cancer using high energy radiation, usually x-rays. The type and amount of radiation that you receive is carefully calculated to damage the cancer cells. This stops them from dividing properly so they are destroyed. Your treatment is planned to avoid as much healthy tissue as possible. However some healthy tissue is affected which causes side effects.

Radiotherapy treatment can be given alone, after or instead of surgery. It can also be given before, with or after chemotherapy or hormone treatment.

Radiotherapy team looking after you

The doctor responsible for your care is called a Clinical Oncologist. They will prescribe your radiotherapy treatment. This will be planned by a team of physicists and planning radiographers. The therapeutic radiographers will give you your treatment.

Velindre is a teaching hospital so your team may include a student radiographer, student nurse or a medical student. Please tell us if you don't want a student present during your clinic or treatment appointment.

We will ask your name, address and date of birth every time you come to the radiotherapy department. This is to avoid any confusion.

During your treatment you may be seen by the information, support and review team. The team includes specialist radiographers with extra training to advise you on how best to deal with any side effects. They can also prescribe medication to help. They will provide information and advice on any practical, financial or emotional concerns you may have. You can speak to them at any point during treatment; their number is at the end of this leaflet.

How many treatments will I need?

Radiotherapy is normally given Monday to Friday as an outpatient. The number of treatments you will need depends on many facts about you and your particular type of cancer. Your doctor will decide how many treatments are best for you.

Having chemotherapy with radiotherapy

We will explain your chemotherapy and give you separate leaflets if you are having this treatment.

Transport to and from Velindre

Hospital transport is available but most people use their own transport. If you would like to use hospital transport, please give us as much notice as possible to arrange this for you. There is a high demand for transport so you will need to be prepared to wait for some time to be picked up and taken home. Spaces are limited so please consider travelling alone. Some local support groups can also arrange transport. Also, patients on particular benefits can claim travelling expenses, please ask when you come for your treatment.

Planning your radiotherapy treatment

Radiotherapy treatment is planned for each patient individually. We will give you an appointment in the planning department. This is at the front of Velindre hospital.

You may see your doctor to discuss the benefits and risks of radiotherapy. They will ask you to sign a consent form if you haven't already. It is your decision to go ahead with this treatment, so please discuss any concerns with your doctor before you sign the consent form.

If you have already signed your consent form for treatment you may only see the planning radiographers who will explain everything that is going to happen to you.

Mould room

If you are having treatment to your head or neck we may need you to wear a special mask to keep your head still. You will wear your mask for your planning CT scan and your treatment. You may be asked to go to mould room to have your mask made or it may take place at your CT scan. We will give you more information about the mould room if you need to go there.

CT planning scan

Most people will need to have a CT scan. This scan helps your doctor have a detailed picture of the area that needs treatment. The scan usually takes about 20 minutes.

Picture of the CT scanner

We may ask you to take off some of your clothing depending on which part of the body we are treating. You will be given a gown to wear to keep you covered up. We will ask you to lie on the couch. Please tell us if you are not comfortable because you will need lay in this position, breathing normally, during your scan and for each day of your treatment.

If you find it uncomfortable or painful to lie flat we advise you to take some pain relief before your scan as the couch is very hard. Please bring your painkillers with you for your planning appointment and your treatment appointments just in case you need them.

You will not see or feel anything during the scan. The radiographers will leave the room to turn the scanner on, but they will watch you very closely through a large window.

We may need to draw some marks on your skin as reference points for your treatment. We will ask your permission to permanently mark these points. We will make a tiny dot by using the tip of a sterile needle to place black ink just under your skin. It is a permanent mark but is as tiny as a freckle. This will mean we have accurate marks to position you for your treatment every day, so you are able to wash during treatment.

A picture of a permanent skin mark

Starting your radiotherapy treatment

You may start your treatment the same day or there can be a few days or weeks between your planning scan and the start of your treatment. This can depend how urgent the doctor feels your treatment is. Time is needed to plan your treatment and this will be booked when the next available slot is available on your treatment machine.

Please let us know if there is any time that you would not be able to come for treatment. We will take this in to account when we book your treatment. Please tell us if you have any special needs that may affect your appointments, such as:

needing transport

having any other treatment (chemotherapy for example)

We will send you a letter or call you with your first appointment. We will give you the rest of your appointments when you come for your first treatment.

If you have a problem with the appointment, please phone the radiotherapy booking clerk as soon as possible. If the answer machine comes on, please leave your name and phone number slowly and clearly. We will ring you back as soon as possible.

Your first radiotherapy treatment

If you are an outpatient when you come for your treatment, please come to the radiotherapy entrance which is around the back of Velindre hospital. Give your name and hand your letter to the receptionist in the radiotherapy waiting room. They will tell you where to sit and wait or direct you straight to your treatment machine.

If you are an in-patient, one of the hospital porters will normally collect you and take you to the treatment machine. You may be treated at any time in the day, depending upon when there is a free slot on the treatment machine.

Your radiographers will chat to you before you go in for your first treatment. We will explain what will happen during your treatment and tell you about the possible side effects you may experience. We will give you advice about skin care during your treatment. Please ask any questions you have about your treatment. We may need you to re-sign your consent form before you have your first treatment.

Occasionally unforeseen machine breakdowns can happen during your treatment. This may cause delays or cancellation of your appointment on that day. We will explain this to you in more detail on your first day.

During your radiotherapy treatment

You may have your radiotherapy treatment on either the DXR (deep x-ray) or a linear accelerator (LA for short). The linear accelerators each have a number, so for example, you may have your treatment on LA 4 or LA 5. The LA machines may look and sound different but they give the same treatment.

In the treatment room, we will ask you to lie or sit in the same position you were in for your planning scan. We will position you carefully using the reference marks we made at planning. When you are in the correct position, we will ask you to lie or sit still and breathe normally. We will leave the room to switch the machine on but are watching you all the time.

If you are having your treatment on the DXR machine, the end of the machine will gently touch your skin. The DXR machine does not make a noise.

Having treatment on DXR machine

If you are having treatment on a linear accelerator, the machine can be controlled and moved to the different treatment angles outside the room. When the machine is moving, it may come close to you but it will not touch you. When the machine is switched on you won't feel anything, but you may hear it buzzing.

Having treatment on the Lin Acc

The radiographers will watch you carefully on television monitors. If you feel uncomfortable while the machine is on please wave your hand. We can switch the machine off and restart the treatment when you are comfortable again.
You will need to lie or sit still on the treatment couch for about 10 - 15 minutes. When your treatment is finished, please stay still until the radiographers say you can move.

Side effects of radiotherapy

The side effects you may experience will depend on which part of the body we are treating and how much treatment you have. Everyone's reaction is different. Side effects only affect the part of the body that we are treating. Your doctor will tell you the specific side effects that you may expect.

If you receive just one treatment, side effects can develop within 48 hours. If you are having 5 or more treatments, they normally develop near the end of treatment.

Radiotherapy continues to work inside your body for about 2 weeks after you have finished your treatment so any side effects you experience will continue for this time also. After about 2 weeks you will start to feel better, everybody's recovery time is different.

Tiredness

Radiotherapy can make you feel more tired than usual. You should listen to your body and rest if you need to but continue your normal activities if you feel able. Some people find a little exercise; such as walking can help their tiredness.

Skin reaction

Your skin within the treatment area may turn pink, feel warm and tender; also can be dry and itchy. We encourage you to continue your normal skin care routine during treatment; we will discuss skincare with you on your first treatment.

Side effects of radiotherapy to your neck

If you are having treatment to your neck, your throat will become sore and you may have trouble swallowing some foods. We can give you medication to help soothe your throat and suggest a soft food diet. Please ask your radiographers for advice.

Side effects of radiotherapy to your mouth

Side effects of having treatment to your mouth include:

Your mouth may become dry and sore

You may develop ulcers

Your saliva may become thick and stringy

You may have difficulty chewing

You may notice your taste changes

We will give you a mouthwash to keep your mouth clean during treatment. We will advise you how to care for your mouth and teeth or dentures.

If you smoke, we recommend you stop. If you drink alcohol, you should try to reduce the amount you drink. This will help you manage the side effects.

If you are struggling with eating, please tell your radiographers, so we can refer you to see a dietitian.

Side effects of radiotherapy to your chest

You may develop a cough, or start to cough more than usual and you may become more breathless.

You may notice some difficulty or soreness swallowing. We can give you medication to help. If it occurs during your treatment please tell your radiographer. If it occurs after your treatment please tell your specialist nurse or ring the review team for advice (their number is at the back of this booklet).

If you have just one or two treatments to your chest, you may notice pain or increased pain in your chest. You may develop flu like symptoms such as a temperature or a fever, which causes sweating. This will settle during the first 2 days after treatment. Pain relief can help so please speak to the review radiographers for further advice.

Side effects of radiotherapy to your brain

Radiotherapy to your brain may cause headaches and you may feel sick. Please tell your radiographers if this happens. There is medication that can help reduce these side effects.

Radiotherapy will cause hair loss on your head. This may happen during or after you have finished your treatment. Your hair may grow back 2 - 3 months after you finish your treatment. We have a leaflet that tells you more on coping with hair loss. Please ask your radiographer if you would like a copy. During your treatment you should wash and brush your hair gently. Use a mild shampoo such as a baby shampoo.

Side effects of radiotherapy to your abdomen and pelvis

Treatment to your abdomen or pelvis may cause diarrhoea and increased wind. Please ask your radiographer for advice on how to manage this.

The treatment may irritate your bladder and cause symptoms such as pain or burning when you pass water. You may find you need to pass water more often. We advise you to drink lots of water to help. Please tell your radiographers if you are having any of these symptoms.

You may also feel sick. Drinking lots of fluids may help. We can give you anti-sickness medicine if you need it.

Side effects of radiotherapy to your bones

You may experience an increase in pain ('a pain flare') in the area we have treated. It is important to have good pain relief during this time. Please speak to your radiographers, doctor or specialist nurse to prescribe any more medication you may need. It can take a few weeks for the pain to improve.

Long term side effects

There can be some long term side effects which can become permanent. Your doctor will discuss these with you before you start treatment.

Finishing your treatment

Towards the end of your treatment we will give you an appointment for a follow up at a clinic with your doctor. This may be a few weeks to months after you finish your treatment. We will advise you of this time frame when you finish your treatment. We will give you the names and telephone numbers of your review radiographers. Please ring the review radiographers if you are worried about any side effects after you have finished. Their number is also at the end of this leaflet.

Community support

Your doctor may have discussed having extra support at home. If you would like this support and it hasn't been organised yet, please contact the information, support and review team.

Other support services and information can be accessed through Tenvous or Macmillan. Their details are at the end of this leaflet.

Contact telephone numbers

Velindre Hospital 029 2061 5888

Radiotherapy booking clerks 029 2019 6836

Information, support + review team 029 2061 5888 ext 6421

Transport from Aberdare: The Rowan Tree 01443 479369

Transport from Bridgend: Sandville 01656 743344

Transport from Merthyr: Cancer Aid 01685 379633

Helplines and websites

Tenovus
Helpline: 0808 808 1010
Website: www.tenovus.com

Macmillan cancer support
Helpline: 0808 800 0000
Website: www.macmillan.org.uk

Stop Smoking Wales
Helpline: 0808 250 6053
Website: https://www.helpmequit.wales/

F.PI 1 Issue 16 July 2

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This booklet will help you understand what will happen when you come to Velindre hospital to have radiotherapy treatment. The booklet will explain how your treatment is planned and given. It will discuss side effects you may have and will tell you how to get more information and support.

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This booklet will help you understand what will happen when you come to Velindre hospital to have hormone therapy and radiotherapy treatment.

The booklet will explain how your treatment is planned and given. It will discuss side effects you may have and will tell you how to get more information and support.

A glossary is provided at the front of this booklet to help you understand any words that you may find unfamiliar.

Contact telephone numbers are given at the end of the booklet.

We hope this answers your questions. Please ask us if you have other questions that we have not covered.

Please bring a list of all the medication you are taking every time you come to Velindre.

Patient information is available on Velindre website Please go to: https://velindre.nhs.wales/velindrecc/

Smoking is not allowed within the grounds and inside Velindre Hospital. If you need help giving up please ask us.

This information is evidence based and reviewed annually

Glossary of terms

CT scanner (computerized tomography) - a machine that uses x-rays to take detailed scans of your body

Physicist - a person who does the technical planning of radiotherapy treatment

Therapeutic radiographer - a person who will plan or give radiotherapy treatment

Your doctor has decided you would benefit from a course of radiotherapy to your prostate which may include hormone therapy.

Hormone therapy

Your treatment will usually start with hormone therapy. Prostate cancer uses testosterone to grow. The hormone injections (such as Prostap or Zoladex) will reduce the production of testosterone hormone in your body. This stops the cancer cells growing. This will shrink your prostate and may make it more sensitive to the treatment.

Hormone therapy is given as an injection and is available in one month or three month preparations. Most people will start with monthly injections. You will usually have 3 - 6 months of hormone therapy before starting radiotherapy. The hormone therapy will continue during your radiotherapy. We will advise you when to stop or whether you need to continue.

Usually before your first hormone injection you will start a short course of tablets (usually 3 - 4 weeks). It is important you have had at least a week of tablets before having your first injection. This is because the first injection can cause your body to start to produce more testosterone before reducing it, so the tablets will counteract this reaction.

Side effects of hormone therapy

Each person will react differently to hormone therapy. The side effects can take several months to wear off once the injections have stopped. The most common side effects are:

Hot flushes

Most people will have hot flushes at some point during their hormone treatment. These often happen after eating or when moving from warm to cold.

Weight gain

A lot of people find they put on weight around their stomach. As this is a side effect of the treatment we do not recommend that you try to lose weight other than to eat a normal healthy diet.

Loss of erections

The hormone therapy can cause you to have problems with keeping a firm erection. If this causes concern please discuss this with the team looking after you or contact your urology specialist nurses for advice.

Loss of sex drive

Hormone treatment reduces the level of testosterone in your body so you may start to lose interest in sex. It is important to talk to your partner about how you are feeling.

Tiredness

Feeling tired and weary is common at the start of treatment and you may feel more emotional. Some people find that they feel physically weaker.

Radiotherapy

Radiotherapy is a treatment for cancer using high energy radiation, usually x-rays. The type and amount of radiation that you receive is carefully calculated to damage cancer cells. This stops them from dividing properly so they are destroyed. Your treatment will be planned to avoid as much healthy tissues as possible. However some healthy tissue is affected which causes side effects. We will tell you more about this on page 12.

Radiotherapy team looking after you

The doctor responsible for your care is called a Clinical Oncologist. They will prescribe your radiotherapy treatment. This will be planned by a team of physicists and planning radiographers. The therapeutic radiographers will give you your treatment.

Velindre is a teaching hospital so your team may include a student radiographer, student nurse or a medical student. If you don't want a student present during your clinic or treatment appointment, please tell your doctor or radiographer.

We will ask your name, address and date of birth every time you come to the radiotherapy department. This is to avoid any confusion.

During your treatment you will be seen by the review team. The team includes specialist radiographers with extra training to advise you on how best to deal with any side effects. They can also prescribe medication to help. They will provide information and advice on any practical, financial or emotional concerns you may have. If you feel you would benefit by speaking to the team; their number is on page 16.

How many treatments will I need?

Radiotherapy is normally given Monday to Friday as an outpatient. The number of treatments you will need depends on many facts about you and your particular type of tumour. Your doctor will decide how many treatments are best for you.

Transport to and from Velindre

Hospital transport is available but most people use their own transport. If you would like to use hospital transport, please give us as much notice as possible to arrange this for you. There is a high demand for transport so you will need to be prepared to wait for some time to be picked up and taken home. Spaces are limited so please consider travelling alone. Some local support groups can also arrange transport (see page 16). Also patients on particular benefits can claim travelling expenses, please ask when you come for your treatment.

Planning your radiotherapy

To plan your radiotherapy you will need to have a CT scan. This scan gives your doctor a detailed picture of the area that needs to be treated. Some people will have gold seeds placed in the prostate to help guide the radiotherapy. If this applies to you, your doctor will talk to you separately. You will be sent an appointment to go to the planning department which is at the front of Velindre hospital.

If you have not signed a consent form for treatment during your outpatient appointment, you may see your doctor to discuss the benefits and risks of radiotherapy and sign your consent to have the treatment during this planning appointment. It is your decision to go ahead with this treatment, so please discuss any concerns you have about your treatment.

If you have already signed your consent form you may only see the planning radiographers who will explain everything that is going to happen to you.

You will be sent instructions which you must follow to prepare for your scan and your radiotherapy treatment. We will ask you to empty your bowel (rectum) for your scan, and each radiotherapy treatment for the first three weeks. You will need to have a comfortably full bladder for your scan and all your treatment appointments.

This is because your bladder and bowel sit closely to your prostate; by having a full bladder and an empty bowel this ensures your internal organs are in the same position each day. This will also help to reduce the side effects of your treatment by moving the bladder and bowel away from the treatment area.

Please ensure you follow these instructions. If you have any problems, please contact the planning radiographers, see page 16 for their number.

During your scan

For your scan we will ask you to take off your trousers and underwear. We will ask you to lie on a hard couch, there will be supports for your head and knees, and you will need to rest your arms on your chest. Please tell us if you are not comfortable because you will need to maintain this position, breathing normally, while we do the scan and for each day of your treatment.

You will not see or feel anything during the scan. The radiographers will leave the room to turn the scanner on, but they will be watching you very closely through a large window. The scan is very quick; it will only take a few minutes.

Your position in the CT scanner

We will draw some marks on your skin which we will use as reference points for your treatment. It is helpful for us if we can permanently mark these reference points, but we will ask your permission before doing so.

A picture of permanent ink dot

We will make a tiny dot by using the tip of a sterile needle to place black ink just under your skin. It is a permanent mark but is as tiny as a freckle. This will mean we have accurate marks to position you for your treatment every day, so you are able to wash during treatment.

Starting your treatment

There can be a few weeks in-between your planning scan and the start of your treatment. This is due to the time needed to plan your treatment and when the next available slot is on your treatment machine.

Please let us know if there is a time that you would be unable to come for treatment. We will take this in to account when we book your treatment. Please tell us if you have any special needs that may affect your appointments, such as:

Needing transport

Having any other treatment (chemotherapy for example)

We will send you a letter or call you with your first appointment. We will give you the rest of your appointments when you come for your first treatment.

If you have a problem with the appointment, please phone the radiotherapy booking clerk as soon as possible. The phone number is on page 16. If the answer machine comes on, please leave your name and phone number slowly and clearly. We will ring you back as soon as possible.

Your first radiotherapy treatment

Please follow the same rectum emptying and bladder filling preparation you did for your planning appointment.

Please come to the radiotherapy entrance which is around the back of Velindre hospital. Give your name and hand your letter to the receptionist in the radiotherapy waiting room. They will tell you where to sit and wait or direct you straight to your treatment machine.

Your radiographers will talk to you before you go in for your first treatment. We will explain what will happen during your treatment and tell you about the possible side effects you may experience. Please ask any questions you have regarding your treatment.

Occasionally unforeseen machine breakdowns can happen during your treatment. This may cause delays or cancellation of your appointment on that day. We will explain this to you in more detail on your first day.

There are different types of treatment machines but most people have their treatment on a Linear Accelerator (shortened to LA). They each have a number, for example, you may have your treatment on LA 4 or LA 5. The LA machines may look and sound different but they give the same treatment.

During your radiotherapy treatment

In the treatment room we will ask you to lie on the couch in the same position you were in for your planning scan. We will position you carefully using the permanent reference marks made at planning. When you are in the correct position, we will ask you to lie still and breathe normally.

Having treatment on a linear accelerator

The machine can be controlled and moved by the radiographers outside the room. When the machine is moving, it may come close to you but it will not touch you. When the machine is switched on you won't feel anything, but you may hear it buzzing.

We will watch you carefully on television monitors. If you feel uncomfortable while the machine is on please wave your hand. We can switch the machine off and restart the treatment when you are comfortable again.

Usually on your first day of treatment and at regular points afterwards, we will take pictures or scan the area that is being treated; you may be lying on the couch for a few extra minutes whilst this is done. The images are only used to help us check you are in the correct position for your treatment.

You need to lie still on the treatment couch for about 10 - 15 minutes, but the treatment itself (when you hear the buzzing noise) usually only takes a few minutes. When your treatment is finished, the couch is at a high level so please stay still until the radiographers have lowered the couch. You can then leave the treatment room.

Short term side effects of radiotherapy treatment

You do not normally experience side effects straight away; any side effects that you experience usually start after about 2 weeks of treatment. Side effects only affect the area of the body that we are treating.

Radiotherapy continues to work inside your body for up to 10 days after you have finished your treatment so any side effects you experience will continue for this time also. After 10 days you will start to recover.

Tiredness (fatigue)

Radiotherapy can make you feel more tired than usual. You should listen to your body and rest if you need to but continue your normal activities if you feel able. We recommend that keeping active, drinking plenty of water and eating a healthy diet can help reduce tiredness. Light exercise such as walking can be helpful in coping with fatigue.

Skin reactions

Most people will not have a noticeable skin reaction. Your skin within the treatment area may turn pink, feel warm and tender. We encourage you to continue your normal skin care routine during your treatment; we will discuss skincare with you on your first treatment.

Diarrhoea

Although we try to reduce the amount of bowel that is within the treatment area some will be treated. This may cause some diarrhoea and increased wind, which can cause bloating and stomach cramps. Please ask your radiographer for advice on how to manage this.

Inflamed bowel (proctitis)

You may notice you get the feeling you need to open your bowels more often, causing frequent small stools and mucus to be passed. This is caused by inflammation from the treatment; the use of suppositories can soothe this reaction.

Cystitis (burning when you pass water)

Radiotherapy may irritate the lining of your bladder. This can make you feel you need to pass water more often and a burning sensation. We will ask you to drink more water than usual to help keep your urine dilute. If the burning persists, we may ask you for a sample of urine so we can check for infection. You may notice the flow of your urine gets weaker. If you are concerned, please let the review radiographers know.

Piles (haemorrhoids)

If you have suffered from piles, radiotherapy may irritate them. Your review radiographer can prescribe suppositories or steroid cream to help you feel more comfortable.

Loss of hair

You may lose some of your pubic hair. It will grow back some time after you finish treatment. It may grow back a little thinner and finer than it was before.

Late side effects

Longer term side effects are rare and don't happen to everyone. They can develop months or even years after the treatment has finished. Your doctor will discuss this with you. Please tell us if you have any concerns.

You may notice changes to your normal bowel habit, for example your stools may become looser and more frequent than they were before treatment.

Radiotherapy to your pelvis may make it difficult for you to have an erection. People who are able to have an erection may notice a smaller amount of fluid in their ejaculate. If you have any concerns, please speak to your specialist nurse.

We expect your radiotherapy treatment to make you infertile. However, some people keep their fertility. We strongly advise using appropriate contraception for at least 3 months after your treatment, if this is relevant to your situation.

Finishing your treatment

Before the end of your treatment we will give you a follow up clinic appointment with your doctor. This will usually be about six months after finishing your treatment. The follow up form you are given will explain your appointment, and has the names and telephone numbers of your review radiographers so you can contact them after your treatment has finished if you are worried about your treatment side effects.

You will need to have regular PSA blood tests. Your doctor will use this to check if the treatment has been successful. PSA is a guide for activity of the prostate, although this result can change slightly for many different reasons not related to prostate cancer. A stable result is a good sign that the treatment has worked, but it can take about a year after treatment has finished for the results to stabilise.

You will be asked to have the PSA blood test done at your GP surgery 1-2 weeks before each follow up appointment. This is so we can discuss the result with you during your appointment.

Contact telephone numbers

Velindre Hospital 029 2061 5888

Information, support & review team 029 2061 5888 ext 6421

Planning radiographers 029 2061 5888 ext 6150

Radiotherapy booking clerks 029 2019 6836

Urology specialist nurses 029 2061 5888 ext 4680

Transport from Aberdare: The Rowan Tree 01443 479369

Transport from Bridgend: Sandville 01656 743344

Transport from Merthyr Cancer Aid 01685 379633

Helplines and websites

Tenovus freephone helpline 0808 808 1010

Macmillan Cancer Support 0808 808 0000
www.macmillan.org.uk

Procare (Prostate Cancer Support
Cardiff) 029 2075 6044

Prostate Cancer UK 0800 074 8383
www.prostatecanceruk.org

F.PI 25 Issue 15 June 2019

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Radiotherapy and hormone therapy for prostate cancer

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This booklet will help you understand what will happen when you come to Velindre hospital to have hormone therapy and radiotherapy treatment. The booklet will explain how your treatment is planned and given. It will discuss side effects you may have and will tell you how to get more information and support.

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You usually start by seeing your GP to have your symptoms checked. Your GP usually arranges some tests. The first tests used to diagnose prostate cancer are:

If your PSA level is raised or your rectal examination is unusual your GP refers you to a specialist doctor (urologist). Your GP may test your PSA level again if it is raised but your prostate feels normal.

At the hospital

A specialist doctor or nurse asks about your symptoms and any other medical conditions. They check if you have any risk factors for prostate cancer. The doctor may do another rectal examination and arrange another PSA test. They will talk to you about further tests you may have. These may include:

Further tests after diagnosis

Whether you have any further tests will depend on the risk of the cancer growing quickly. Doctors work out your risk by looking at the PSA level, the stage, and the grade of the cancer.

To help diagnose or stage prostate cancer, you may have staging tests:

Knowing the stage, grade and risk group of the cancer helps you and your doctor to decide on the best treatment for you.

The stage

The stage of prostate cancer describes its size and how far it has spread, based on your test results. Doctors often use the TNM staging system or a number staging system.

The grade

Your doctor decides the grade by how the prostate cancer cells (from your biopsy) look under the microscope. This tells them how quickly the cancer might grow or spread. Doctors use a combination of 2 systems to grade prostate cancer:

Gleason score - examines the pattern of cells in the prostate tissues and grades them from 1 to 5. The most common and highest grades are added to give your Gleason score

Grade Group - grades the cancer between 1 and 5 based on your Gleason score.

Risk group

Prostate cancer is also divided into risk groups. Your treatment options will depend on the risk group the cancer is in.

Your doctor looks at the stage of the cancer, your PSA level and your Gleason score to work out the risk group. They use a system called the Cambridge Prognostic Group (CPG). It divides prostate cancer risk into 5 different groups.

You will have regular follow-up appointments after treatment for prostate cancer.

You may get anxious between appointments. This is natural. It may help to get support from family, friends or a support organisation such as Prostate Cancer UK.

Macmillan is also here to support you. If you would like to talk, you can:

Call the Macmillan Support Line on 0808 808 00 00.

Chat online to our specialists online.

Visit our prostate cancer forum to talk with people who have been affected by prostate cancer, share your experience, and ask an expert your questions.

Sex, relationships and fertility

Prostate cancer treatments can affect your sex life. They can reduce your sex drive (libido) and cause difficulties getting an erection. This is called erectile dysfunction or ED. This may be very worrying for you. There are different treatments and support available to improve sexual difficulties.

Talk to your doctor or nurse about sexual difficulties or concerns. They will be used to talking about these issues. You may want to involve a partner in these discussions.

Fertility

Prostate cancer treatments can affect your fertility. If this is a concern for you, talk to your doctor or nurse. You may be able to store sperm before treatment starts.

Well-being and recovery

Even if you already have a healthy lifestyle, you may choose to make some positive lifestyle changes after treatment.

Small changes to the way you live such as eating well and keeping active can improve your health and well-being and help your body recover.

The language we use

We want everyone affected by cancer to feel our information is written for them.

We try to make sure our information is as clear as possible. We use plain English, avoid jargon, explain any medical words, use illustrations to explain text, and make sure important points are highlighted clearly.

We use gender-inclusive language and talk to our readers as 'you' so that everyone feels included. Where clinically necessary we use the terms 'men' and 'women' or 'male' and 'female'. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected. Our aims are for our information to be as clear and relevant as possible for everyone.

You can read more about how we produce our information here.

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Early (localised) prostate cancer - Macmillan Cancer Support

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You usually start by seeing your GP to have your symptoms checked. Your GP usually arranges some tests. The first tests used to diagnose prostate cancer are: If your PSA level is raised or your rectal examination is unusual your GP refers you to a specialist doctor (urologist).

# data[].attributes.attachment_link.readable_text
This booklet will help you understand what will happen when you come to Velindre hospital to have hormone therapy and radiotherapy treatment.

The booklet will explain how your treatment is planned and given. It will discuss side effects you may have and will tell you how to get more information and support.

A glossary is provided at the front of this booklet to help you understand any words that you may find unfamiliar.

Contact telephone numbers are given at the end of the booklet.

We hope this answers your questions. Please ask us if you have other questions that we have not covered.

Please bring a list of all the medication you are taking every time you come to Velindre.

Patient information is available on Velindre website Please go to: https://velindre.nhs.wales/velindrecc/

Smoking is not allowed within the grounds and inside Velindre Hospital. If you need help giving up please ask us.

This information is evidence based and reviewed annually

Glossary of terms

CT scanner (computerized tomography) - a machine that uses x-rays to take detailed scans of your body

Physicist - a person who does the technical planning of radiotherapy treatment

Therapeutic radiographer - a person who will plan or give radiotherapy treatment

Your doctor has decided you would benefit from a course of radiotherapy to your prostate which may include hormone therapy.

Hormone therapy

Your treatment will usually start with hormone therapy. Prostate cancer uses testosterone to grow. The hormone injections (such as Prostap or Zoladex) will reduce the production of testosterone hormone in your body. This stops the cancer cells growing. This will shrink your prostate and may make it more sensitive to the treatment.

Hormone therapy is given as an injection and is available in one month or three month preparations. Most people will start with monthly injections. You will usually have 3 - 6 months of hormone therapy before starting radiotherapy. The hormone therapy will continue during your radiotherapy. We will advise you when to stop or whether you need to continue.

Usually before your first hormone injection you will start a short course of tablets (usually 3 - 4 weeks). It is important you have had at least a week of tablets before having your first injection. This is because the first injection can cause your body to start to produce more testosterone before reducing it, so the tablets will counteract this reaction.

Side effects of hormone therapy

Each person will react differently to hormone therapy. The side effects can take several months to wear off once the injections have stopped. The most common side effects are:

Hot flushes

Most people will have hot flushes at some point during their hormone treatment. These often happen after eating or when moving from warm to cold.

Weight gain

A lot of people find they put on weight around their stomach. As this is a side effect of the treatment we do not recommend that you try to lose weight other than to eat a normal healthy diet.

Loss of erections

The hormone therapy can cause you to have problems with keeping a firm erection. If this causes concern please discuss this with the team looking after you or contact your urology specialist nurses for advice.

Loss of sex drive

Hormone treatment reduces the level of testosterone in your body so you may start to lose interest in sex. It is important to talk to your partner about how you are feeling.

Tiredness

Feeling tired and weary is common at the start of treatment and you may feel more emotional. Some people find that they feel physically weaker.

Radiotherapy

Radiotherapy is a treatment for cancer using high energy radiation, usually x-rays. The type and amount of radiation that you receive is carefully calculated to damage cancer cells. This stops them from dividing properly so they are destroyed. Your treatment will be planned to avoid as much healthy tissues as possible. However some healthy tissue is affected which causes side effects. We will tell you more about this on page 12.

Radiotherapy team looking after you

The doctor responsible for your care is called a Clinical Oncologist. They will prescribe your radiotherapy treatment. This will be planned by a team of physicists and planning radiographers. The therapeutic radiographers will give you your treatment.

Velindre is a teaching hospital so your team may include a student radiographer, student nurse or a medical student. If you don't want a student present during your clinic or treatment appointment, please tell your doctor or radiographer.

We will ask your name, address and date of birth every time you come to the radiotherapy department. This is to avoid any confusion.

During your treatment you will be seen by the review team. The team includes specialist radiographers with extra training to advise you on how best to deal with any side effects. They can also prescribe medication to help. They will provide information and advice on any practical, financial or emotional concerns you may have. If you feel you would benefit by speaking to the team; their number is on page 16.

How many treatments will I need?

Radiotherapy is normally given Monday to Friday as an outpatient. The number of treatments you will need depends on many facts about you and your particular type of tumour. Your doctor will decide how many treatments are best for you.

Transport to and from Velindre

Hospital transport is available but most people use their own transport. If you would like to use hospital transport, please give us as much notice as possible to arrange this for you. There is a high demand for transport so you will need to be prepared to wait for some time to be picked up and taken home. Spaces are limited so please consider travelling alone. Some local support groups can also arrange transport (see page 16). Also patients on particular benefits can claim travelling expenses, please ask when you come for your treatment.

Planning your radiotherapy

To plan your radiotherapy you will need to have a CT scan. This scan gives your doctor a detailed picture of the area that needs to be treated. Some people will have gold seeds placed in the prostate to help guide the radiotherapy. If this applies to you, your doctor will talk to you separately. You will be sent an appointment to go to the planning department which is at the front of Velindre hospital.

If you have not signed a consent form for treatment during your outpatient appointment, you may see your doctor to discuss the benefits and risks of radiotherapy and sign your consent to have the treatment during this planning appointment. It is your decision to go ahead with this treatment, so please discuss any concerns you have about your treatment.

If you have already signed your consent form you may only see the planning radiographers who will explain everything that is going to happen to you.

You will be sent instructions which you must follow to prepare for your scan and your radiotherapy treatment. We will ask you to empty your bowel (rectum) for your scan, and each radiotherapy treatment for the first three weeks. You will need to have a comfortably full bladder for your scan and all your treatment appointments.

This is because your bladder and bowel sit closely to your prostate; by having a full bladder and an empty bowel this ensures your internal organs are in the same position each day. This will also help to reduce the side effects of your treatment by moving the bladder and bowel away from the treatment area.

Please ensure you follow these instructions. If you have any problems, please contact the planning radiographers, see page 16 for their number.

During your scan

For your scan we will ask you to take off your trousers and underwear. We will ask you to lie on a hard couch, there will be supports for your head and knees, and you will need to rest your arms on your chest. Please tell us if you are not comfortable because you will need to maintain this position, breathing normally, while we do the scan and for each day of your treatment.

You will not see or feel anything during the scan. The radiographers will leave the room to turn the scanner on, but they will be watching you very closely through a large window. The scan is very quick; it will only take a few minutes.

Your position in the CT scanner

We will draw some marks on your skin which we will use as reference points for your treatment. It is helpful for us if we can permanently mark these reference points, but we will ask your permission before doing so.

A picture of permanent ink dot

We will make a tiny dot by using the tip of a sterile needle to place black ink just under your skin. It is a permanent mark but is as tiny as a freckle. This will mean we have accurate marks to position you for your treatment every day, so you are able to wash during treatment.

Starting your treatment

There can be a few weeks in-between your planning scan and the start of your treatment. This is due to the time needed to plan your treatment and when the next available slot is on your treatment machine.

Please let us know if there is a time that you would be unable to come for treatment. We will take this in to account when we book your treatment. Please tell us if you have any special needs that may affect your appointments, such as:

Needing transport

Having any other treatment (chemotherapy for example)

We will send you a letter or call you with your first appointment. We will give you the rest of your appointments when you come for your first treatment.

If you have a problem with the appointment, please phone the radiotherapy booking clerk as soon as possible. The phone number is on page 16. If the answer machine comes on, please leave your name and phone number slowly and clearly. We will ring you back as soon as possible.

Your first radiotherapy treatment

Please follow the same rectum emptying and bladder filling preparation you did for your planning appointment.

Please come to the radiotherapy entrance which is around the back of Velindre hospital. Give your name and hand your letter to the receptionist in the radiotherapy waiting room. They will tell you where to sit and wait or direct you straight to your treatment machine.

Your radiographers will talk to you before you go in for your first treatment. We will explain what will happen during your treatment and tell you about the possible side effects you may experience. Please ask any questions you have regarding your treatment.

Occasionally unforeseen machine breakdowns can happen during your treatment. This may cause delays or cancellation of your appointment on that day. We will explain this to you in more detail on your first day.

There are different types of treatment machines but most people have their treatment on a Linear Accelerator (shortened to LA). They each have a number, for example, you may have your treatment on LA 4 or LA 5. The LA machines may look and sound different but they give the same treatment.

During your radiotherapy treatment

In the treatment room we will ask you to lie on the couch in the same position you were in for your planning scan. We will position you carefully using the permanent reference marks made at planning. When you are in the correct position, we will ask you to lie still and breathe normally.

Having treatment on a linear accelerator

The machine can be controlled and moved by the radiographers outside the room. When the machine is moving, it may come close to you but it will not touch you. When the machine is switched on you won't feel anything, but you may hear it buzzing.

We will watch you carefully on television monitors. If you feel uncomfortable while the machine is on please wave your hand. We can switch the machine off and restart the treatment when you are comfortable again.

Usually on your first day of treatment and at regular points afterwards, we will take pictures or scan the area that is being treated; you may be lying on the couch for a few extra minutes whilst this is done. The images are only used to help us check you are in the correct position for your treatment.

You need to lie still on the treatment couch for about 10 - 15 minutes, but the treatment itself (when you hear the buzzing noise) usually only takes a few minutes. When your treatment is finished, the couch is at a high level so please stay still until the radiographers have lowered the couch. You can then leave the treatment room.

Short term side effects of radiotherapy treatment

You do not normally experience side effects straight away; any side effects that you experience usually start after about 2 weeks of treatment. Side effects only affect the area of the body that we are treating.

Radiotherapy continues to work inside your body for up to 10 days after you have finished your treatment so any side effects you experience will continue for this time also. After 10 days you will start to recover.

Tiredness (fatigue)

Radiotherapy can make you feel more tired than usual. You should listen to your body and rest if you need to but continue your normal activities if you feel able. We recommend that keeping active, drinking plenty of water and eating a healthy diet can help reduce tiredness. Light exercise such as walking can be helpful in coping with fatigue.

Skin reactions

Most people will not have a noticeable skin reaction. Your skin within the treatment area may turn pink, feel warm and tender. We encourage you to continue your normal skin care routine during your treatment; we will discuss skincare with you on your first treatment.

Diarrhoea

Although we try to reduce the amount of bowel that is within the treatment area some will be treated. This may cause some diarrhoea and increased wind, which can cause bloating and stomach cramps. Please ask your radiographer for advice on how to manage this.

Inflamed bowel (proctitis)

You may notice you get the feeling you need to open your bowels more often, causing frequent small stools and mucus to be passed. This is caused by inflammation from the treatment; the use of suppositories can soothe this reaction.

Cystitis (burning when you pass water)

Radiotherapy may irritate the lining of your bladder. This can make you feel you need to pass water more often and a burning sensation. We will ask you to drink more water than usual to help keep your urine dilute. If the burning persists, we may ask you for a sample of urine so we can check for infection. You may notice the flow of your urine gets weaker. If you are concerned, please let the review radiographers know.

Piles (haemorrhoids)

If you have suffered from piles, radiotherapy may irritate them. Your review radiographer can prescribe suppositories or steroid cream to help you feel more comfortable.

Loss of hair

You may lose some of your pubic hair. It will grow back some time after you finish treatment. It may grow back a little thinner and finer than it was before.

Late side effects

Longer term side effects are rare and don't happen to everyone. They can develop months or even years after the treatment has finished. Your doctor will discuss this with you. Please tell us if you have any concerns.

You may notice changes to your normal bowel habit, for example your stools may become looser and more frequent than they were before treatment.

Radiotherapy to your pelvis may make it difficult for you to have an erection. People who are able to have an erection may notice a smaller amount of fluid in their ejaculate. If you have any concerns, please speak to your specialist nurse.

We expect your radiotherapy treatment to make you infertile. However, some people keep their fertility. We strongly advise using appropriate contraception for at least 3 months after your treatment, if this is relevant to your situation.

Finishing your treatment

Before the end of your treatment we will give you a follow up clinic appointment with your doctor. This will usually be about six months after finishing your treatment. The follow up form you are given will explain your appointment, and has the names and telephone numbers of your review radiographers so you can contact them after your treatment has finished if you are worried about your treatment side effects.

You will need to have regular PSA blood tests. Your doctor will use this to check if the treatment has been successful. PSA is a guide for activity of the prostate, although this result can change slightly for many different reasons not related to prostate cancer. A stable result is a good sign that the treatment has worked, but it can take about a year after treatment has finished for the results to stabilise.

You will be asked to have the PSA blood test done at your GP surgery 1-2 weeks before each follow up appointment. This is so we can discuss the result with you during your appointment.

Contact telephone numbers

Velindre Hospital 029 2061 5888

Information, support & review team 029 2061 5888 ext 6421

Planning radiographers 029 2061 5888 ext 6150

Radiotherapy booking clerks 029 2019 6836

Urology specialist nurses 029 2061 5888 ext 4680

Transport from Aberdare: The Rowan Tree 01443 479369

Transport from Bridgend: Sandville 01656 743344

Transport from Merthyr Cancer Aid 01685 379633

Helplines and websites

Tenovus freephone helpline 0808 808 1010

Macmillan Cancer Support 0808 808 0000
www.macmillan.org.uk

Procare (Prostate Cancer Support
Cardiff) 029 2075 6044

Prostate Cancer UK 0800 074 8383
www.prostatecanceruk.org

F.PI 25 Issue 15 June 2019

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Radiotherapy and hormone therapy for prostate cancer

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This booklet will help you understand what will happen when you come to Velindre hospital to have hormone therapy and radiotherapy treatment. The booklet will explain how your treatment is planned and given. It will discuss side effects you may have and will tell you how to get more information and support.

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Rising Cost of Living Support
Financial Support:
https://padlet.com/redirect?url=https%3A%2F%2Fvelindre.nhs.wales%2Fcost-of-living%2Ffinancial-support%2F

Mental Health Support:
https://padlet.com/redirect?url=https%3A%2F%2Fvelindre.nhs.wales%2Fcost-of-living%2Fmental-health-support%2F

Wellbeing Support:
https://velindre.nhs.wales/cost-of-living/wellbeing-support/

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We know that receiving a cancer diagnosis can have an impact on your financial circumstances, whether you're in or out of work. On top of that, many people are feeling the pressure of managing their money as the cost of living continues to rise.
Since the coronavirus (COVID-19) pandemic began, we've seen more patients with lost or lowered incomes and in need of advice and support. We've helped many of them to feel less vulnerable and this has continued in recent times.

Welfare Rights

Here at Velindre Cancer Centre, we have an experienced Macmillan Welfare Rights team who understand the pressures you might face. Our confidential service will listen to you without any judgement and offer guidance that's sensitive to your situation.

Our Velindre Macmillan Welfare Rights team can:

Assist with benefit and grant applications

Advise on benefit entitlements

Assist on appeals

Help you to fill in forms

Refer you to other services

If you would like an appointment with our Welfare Rights team, please contact: 02920 316277 or send an email to vcc.supportivecare@wales.nhs.uk

You should always be aware of the state benefits and financial support you may be entitled to. Below are benefits that may be relevant to yourself or a loved one.

If you look after someone with cancer, you may be able to claim benefits, such as Carer's allowance. Our Macmillan Welfare Rights team can advise you or your loved ones.

Managing your bills and costs

The price of heating your home, eating, and travelling can all add up. It's important to be aware of the support available to you to avoid it causing interruptions to your treatment, such as missed appointments.

If you are having difficulties paying your bills, we recommend you contact your supplier as soon as possible and find out about the available options.

Here's more useful information.

Helpful resources

We have a number of resources that are available to you. To download these resources, please use the links below.

How we meet your additional needs

The clinicians who deliver your care will assess your needs at various points of your treatment. Where appropriate, they will make referrals for you to receive extra support from specialist departments.

If you think you may benefit from a referral or would like to know more about the options available to you, please speak to a clinician at your next appointment.

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We know that receiving a cancer diagnosis can have an impact on your financial circumstances, whether you're in or out of work. On top of that, many people are feeling the pressure of managing their money as the cost of living continues to rise.

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Velindre Cancer Centre has put in place measures to ensure the safety of all our patients and staff while also ensuring services are available as normal in response to the Coronavirus outbreak. NHS Wales and Public Health Wales (PHW) are well prepared for outbreaks of new infectious diseases and we want to reassure you as patients and carers that your safety, along with that of our staff are our top priorities. That is why we encouraging our patients to attend all appointments as usual if possible unless you are feeling unwell or have been informed otherwise.

For further information about the Coronavirus please see https://phw.nhs.wales

COVID-19 Symptoms​
The most common symptoms of COVID-19 are recent onset of:

new continuous cough and/or

high temperature

change in taste or loss of sense of smell

For most people, COVID-19 will be a mild infection.

People no longer need to contact NHS 111 if they think they may have contracted COVID-19.
You should only contact NHS 111 if you feel you cannot cope with your symptoms at home, your condition gets worse, or your symptoms do not get better after seven days. DO NOT go to a GP surgery, pharmacy or hospital.
You can find the very latest up to date information on COVID-19 on the Public Health Wales website.

To access this information in BSL please https://bcuhb.nhs.wales/links/external-links/phw-covid-19-bsl-info/

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Velindre Cancer Centre has put in place measures to ensure the safety of all our patients and staff while also ensuring services are available as normal in response to the Coronavirus outbreak.

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Flu vaccinations All patients receiving chemotherapy and immunotherapy are at risk from flu. Flu immunisation is recommended if you will be receiving treatment during the autumn and winter. Ideally you should be vaccinated 7 - 10 days before your treatment starts. The immunisation may not be as effective if you have already started treatment because your immune response may be lowered. This reduces your body's ability to form the antibodies needed to protect you from flu.
If you are vaccinated during a course of chemotherapy or immunotherapy, this should be done when your white cell count is at a normal level. You should avoid being vaccinated when your white cell count is low because you may develop a raised temperature. This could be confused with a fever, caused by infection, and could result in unnecessary hospital treatment. Your doctor or nurse will be able to advise you on the right time to have your vaccine.
The adult flu vaccine
This vaccine does not contain any live flu virus so cannot give you the flu.
Child flu vaccine
The children's flu vaccine is given as drops into the nose. This does contain a weakened live virus and so there is a very small chance of catching flu from a child if your white cell count is low. Or if you have not been vaccinated in the 2 weeks before contact with that child. In this situation you should avoid close contact with children who have had the nasal flu vaccine for 2 weeks. If close contact with a child is unavoidable e.g. you are the parent, guardian or carer then you need to discuss with your GP if it is safer for the child to have the adult injected vaccine instead.
Other vaccines
You should not have any live vaccines while you are having chemotherapy and for 6 months afterwards. Examples of live vaccines include:
Who will give the vaccination?
All vaccinations will be given by your own GP practice.
Further questions
If you have any further questions about vaccines please speak to your doctor, nurse or pharmacy team.

Simple measures for you and your family to prevent the spread of flu include covering the mouth or nose when coughing and sneezing, washing your hands and the safe disposal of used tissues. Catch it - Bin It- Kill It!
Infection
You are at an increased risk of picking up infections because your white blood cells which help fight infections can be reduced by this treatment.
If you develop an infection whilst your white blood cells are low, you are at risk of sepsis, this can be life threatening.
Contact Velindre Cancer Centre immediately if you develop any signs of infection, for example flu like symptoms or a temperature above 37.5°centigrade or if your temperature is below 35.5°. The telephone number is at the end of the leaflet.
Contact telephone numbers Velindre Cancer Centre 029 2061 5888
Ask for the treatment helpline if you are unwell at home and need immediate advice at any time of the day or night.
Pharmacy department 029 2061 5888 ext 6223
Monday - Friday 9am - 5pm for queries about your medicines
Macmillan freephone Helpline 0808 808 0000 7 days a week 8am - 8pm for general queries on cancer Tenovus freephone 0808 808 1010 cancer helpline 7 days a week 8am - 8pm for general queries on cancer
This information is also available in Welsh

This leaflet was written by health professionals. The information contained in this leaflet is evidence based. It has been approved by doctors, nurses and patients. It is reviewed and updated every 2 years.

Prepared October 2013 Reviewed December 2019

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Flu vaccinations All patients receiving chemotherapy and immunotherapy are at risk from flu. Flu immunisation is recommended if you will be receiving treatment during the autumn and winter. Ideally you should be vaccinated 7 - 10 days before your treatment starts.

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Outpatient Contact Numbers

Outpatient appointments: 029 2031 6234

Chemotherapy: 029 2031 6248

Radiotherapy Booking Office: 029 2019 6836

Patient Transport: 0300 123 2303

Your outpatient appointment

You should have received a letter telling you;

the time and date of your appointment,

which reception you should go to when you arrive,

anything you need to do beforehand,

what you need to bring with you.

If you're not sure about your appointment, what you need to do before/bring with you, or where you need to go, please call us on the number in your appointment letter to check any details. We are here to help.

Outpatient clinics are held Monday to Friday.

Appointments start at 8:30am and finish at 5pm. Our clinics are held in two places within Velindre Hospital:

the main outpatient department

outpatient clinics by chemotherapy

Patients receiving chemotherapy are usually seen in the morning.

Velindre consultants at other hospitals
Velindre consultants (doctors) attend clinics at other hospitals including:

Some commonly asked questions

Getting to Velindre

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Outpatient Contact Numbers Outpatient appointments: 029 2031 6234 Chemotherapy: 029 2031 6248 Radiotherapy Booking Office: 029 2019 6836 Patient Transport: 0300 123 2303 You should have received a letter telling you; the time and date of your appointment, which reception you should go to when you arrive, anything you need to do beforehand, what you need to bring with you.

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Before being admitted to us, you will probably have some questions, such as what to bring, where to report to when you arrive etc. The following information should help answer these questions and briefly explain what to expect during your stay.

For more information about our inpatients wards, please see our Inpatient Wards page.

We recognise that coming into hospital is an anxious time for you and you family. If you have any particular concerns or questions please let us know. Our ward staff and any of your care team will be happy to help or advise.

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Before being admitted to us, you will probably have some questions, such as what to bring, where to report to when you arrive etc. The following information should help answer these questions and briefly explain what to expect during your stay.

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Cancer and buying travel insurance - Macmillan Cancer Support

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Get advice about buying travel insurance if you have cancer. You will need to check your travel insurance policy covers pre-existing medical conditions.

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Transport times

We do not know the exact time patient transport will arrive at your home. There is a high demand for patient transport so you will need to be prepared to wait some time to be picked up and taken home.

Patient transport may pick you up from home up to 2 hours before your appointment

For AM appointments: please be ready from 8am

For PM appointments: please be ready from 12pm

Please do not worry if you arrive at Velindre earlier or later than the time on your appointment card- we know that patients travelling by patient transport may arrive earlier or later and we will aim to treat you as soon as we can.

For any 'on the day' enquiries about your transport please telephone Welsh Ambulance on 0300 1000 012, or Velindre Ambulance Liaison Office on 029 2031 6974. Staff at Velindre cannot track ambulances.

Patient responsibilities

Please help us use patient transport wisely. To help us, please:

Try to use own transport whenever possible

Be ready when transport arrives.

If you have transport booked and you cancel your hospital appointment, cancel your transport too.

Let us know before 3:30pm the day before your appointment if you no longer need transport or if you have made other transport arrangements.

Help us reduce escorts* - We understand that some patients need medical escorts to bring them into hospital.

*An escort is someone who is travelling to the hospital with you. This could be a medical escort such as a nurse or carer. Or it could be a family member or friend.

If you are able to travel safely without a friend or relative, more patients can be collected by one vehicle. Remember that each patient and escort attending Velindre Hospital is paid for by Velindre.
For patients requiring an overnight stay

Transport will be available to bring patients into Velindre for overnight admission. If an escort is travelling with you please note that we will not be able to provide transport home for the escort.

Unfortunately hospital transport is not available on a Saturday, Sunday or Bank Holiday

What is a wasted patient transport journey?
A wasted patient transport journey is when:

An ambulance or volunteer car is cancelled after 3:30pm the day before your appointment.

An ambulance or volunteer car is cancelled on the day of your hospital appointment or visit.

An ambulance or volunteer car arrives at an address and there is no reply.

A patient turns an ambulance or volunteer car away because they are not ready to travel.

A patient goes home with a friend or relative and uses their own transport, when ambulance transport has been booked.

At times, missing your transport cannot be helped. However, wasted journeys cost Velindre money and inconvenience others.
Please help us use transport wisely Useful telephone numbers To cancel patient transport, please telephone: 029 2031 6974
Monday - Friday 8am - 4pm
For all 'on the day' transport enquiries please telephone:
Welsh Ambulance 0300 1000 012

or

Velindre Ambulance 029 2031 6974

Liaison Office

Please, if you don't need us tell us

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We do not know the exact time patient transport will arrive at your home. There is a high demand for patient transport so you will need to be prepared to wait some time to be picked up and taken home.

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Velindre Cancer Centre - 02920 615888

Treatment Helpline - 02920 615888 and ask for the Treatment Helpline

Chemotherapy bookings - ext: 4495

Pharmacy - ext: 6223

X-ray - ext: 6252

Radiotherapy Reception - ext 6434

Radiotherapy Bookings - ext: 6836

Radiotherapy Review - ext:6421

Outpatient Appointments - 02920 316234

Main Outpatients -ext: 6225

Macmillan Unit at PCH -  01685 728415

Patient transport - 0300 123 2303

Welfare Advice:  029 20316277

Prostate Cancer UK:
Telephone: 0800 074 8383
Website: www.prostatecanceruk.org

Macmillan cancer support:
Telephone: 0808 808 0000
Website: www.macmillan.org.uk
Tenovus cancer support:
Telephone: 0808 808 1010
Website: www.tenovuscancercare.org.uk

Maggie’s support centre:
Telephone:  029 22408024
Website:  cardiff@maggiescentres.org

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Nursing Team

Naomi Swann – Contact Number: 02920 615888 ext. 4681

(Prostate/Testicular/Bladder/Kidney)

Rahima Saeed Abdulrahman – Contact Number: 02920 615888 ext. 4639 (Bladder/Kidney/Prostate)

Katie Rudman – Contact Number: 02920 615888 ext. 4680 (Prostate- Brachytherapy)

Sue Hopkins– Contact Number: 02920 615888 ext. 4384

(Prostate)

Sue Davies - Contact Number: 02920 615888 ext. 4680

(Prostate - MMR)

Macmillan Cancer Support Navigator

Christine Thomas- Contact Number: 02920 615888 ext. 4900

Consultants

Dr. Tanguay/Prof. Staffurth/Dr Emily Renninson
Secretary; Debra Hogg

Telephone number 02920 615888 ext 6830

Dr. Barber/Dr. Frazer
Secretary; Michelle Williams

Telephone number 02920 615888 ext 6241

Dr. Kumar/Dr. Sweeney/Dr. Sashidharan
Secretary; Sarah Oaten

Telephone number 02920 615888 ext 6979

Dr. Palaniappan/Dr. Evans/Dr. Chand
Secretary; Sarah Burgess

Telephone number 02920 615888 ext 6112

Dr. Harris/Dr Fitzgerald
Secretary; Maz Wallis

Telephone number 02920 316219 ext 6205

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Background

CT scans utilize X-rays to produce images of the inside of the body while MRI (magnetic resonance imaging) uses powerful magnetic fields and radio frequency pulses to produce detailed pictures of organs and other internal body structures.

CT scans use radiation (X-rays), and MRIs do not.

MRIs provide more detailed information about the inner organs (soft tissues) such as the brain, skeletal system, reproductive system and other organ systems than is provided by a CT scan.

CT scans are quick, painless, and noninvasive.

MRI scans are not invasive, but they are noisy, take more time, and may cause claustrophobia (anxiety due to being in the enclosed space of the machine).

MRI scans are costlier than CT scans.

MRI scanners use strong magnets.

A CT (computerized tomography) scan is a combination of a series of X-ray images taken at different angles; the CT uses a computer to create images from these X-rays.

An MRI (magnetic resonance imaging) is a scan that uses magnetic fields and radio waves to produce a detailed image of the body's soft tissues and bones.
How does a CT scan (cat scan) work?
A CT scan works by taking multiple X-rays at various angles and then utilizes those X-rays to form a three-dimensional image of whatever organ system is being examined. A computer examines all of the various X-rays taken at different angles and synthesizes the images to form a three-dimensional computer model of internal organs.

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CT scans utilize X-rays to produce images of the inside of the body while MRI (magnetic resonance imaging) uses powerful magnetic fields and radio frequency pulses to produce detailed pictures of organs and other internal body structures. CT scans use radiation (X-rays), and MRIs do not.

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Welcome to Velindre Cancer Centre and the Urology team.

We take care of patients that have been diagnosed with Prostate Cancer.

We have produced this Padlet as a resource of useful information that we hope you will find helpful.

To access all information fully  please use the scroll bars on the side of each column and the scroll bar at the bottom of the page.

Croeso i Ganolfan Ganser Felindre ac i’r tîm Wroleg.

Rydym yn gofalu am gleifion sydd wedi cael eu diagnosio gyda Chanser y Prostad.

Rydym wedi cynhyrchu'r Padlet hwn fel adnodd o wybodaeth ddefnyddiol, yr ydym yn gobeithio y byddwch yn ei ystyried yn ddefnyddiol.

I gael mynediad i’r holl wybodaeth yn llawn, defnyddiwch y bariau sgrolio ar ochr pob colofn, a'r bar sgrolio ar waelod y dudalen.

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If you have cancer or you're close to someone who has, we can help. We bring treatment, emotional support and practical advice to where it matters the most; the heart of the community. Last year...

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Tenovus Cancer Care - giving help, hope, and a voice to everyone affected by cancer.

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Tenovus Cancer Care is a Wales-based charity giving help, hope, and a voice to everyone affected by cancer.

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Ray of Light Wales Cancer Support was set up in 2009, for and by people who are affected by cancer.

Ray of Light recognises and understands the uncertainty, fear and change that comes with a cancer diagnosis. Every year in Wales over 19,000 are diagnosed with cancer but the impact of this diagnosis is felt by far more.

We provide a confidential, safe and non-judgemental space to support people affected by cancer, and
through the turmoil of their loved one's diagnosis, whilst trying to cope with daily family life. For many this support can be a lifeline.

What we do:

We deliver a confidential service and a listening ear in a friendly, relaxed environment.

In the current COVID 19 crisis we have suspended all group gatherings and face to face support. However, thanks to National Lottery support we are now launching Just ASK! - Access Support and Kindness Project so that we can still deliver support sessions remotely, utilising digital platforms.

Sign up for virtual sessions in:

Art Therapy
Chair Yoga
Close Knit Group
Mindfulness
Whittling it Down Group
Can you Hear Us? Cancer Support for Deaf People
Light at the End of the Tunnel - Wellbeing Peer Support
Macmillan HOPE Programme
Little Steps - Programme

Please feel free to join us in this temporary virtual world and hopefully, before too long, we can get together in the real world.

We are planning more sessions and welcome any suggestions or ideas of activities you would like to see, just drop us a line or post on Facebook.

We're celebrating 10 years!!

We rely on volunteers to support our work. All our volunteers have first-hand experience of cancer themselves and have supported a loved one through difficult times.

A big thank you to our wonderful volunteers and group members.....We wouldn't be here without you!
We welcome new volunteers - Find out more...

Monthly meetings

An informal peer support group for carers, friends and family members, come and join us for a cuppa in a friendly and supportive environment.

We've had to adapt our services due to the Covid-19 pandemic but we're still here for you, more information in our Groups page or on our Facebook page.

The Warblers,
Our singing group

Open to anyone affected by cancer, no singing ability needed, just a sense of fun! For more information, upcoming concerts and how you can get involved.

Read More...

Latest News

And the winners are...

A huge thank you to everyone who entered our Easter Online Raffle. We are pleased to announce our winners are (drum roll...) First prize of Afternoon Tea for Two at Pettigrew Tea Rooms - SYBIL FOWLER Second prize of our Easter Egg and Chocolate Hamper - ELERI DAVIES Third prize of £20 B&Q Voucher - [...]

Read more...

Resources and links

We're all in this together! We have collected together a wide range of resources and links to support groups for all types of cancer.

Read more...

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Ray of Light Cancer Support provides free support to patients, carers, friends and families affected by cancer - Ray of Light Wales

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Ray of Light Wales Cancer Support was set up in 2009, for and by people who are affected by cancer. Ray of Light recognises and understands the uncertainty, fear and change that comes with a cancer diagnosis. Every year in Wales over 19,000 are diagnosed with cancer but the impact of this diagnosis is felt [...]

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Supportive Care Team including Welfare Rights

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Supportive Care Team including Welfare Rights

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Supportive Care Team including Welfare Rights

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Who are we?
Supportive Care - Lead Nurse, Michele Pengelly
Michele can help support you and your family whilst you are here
through:

Listening to things you want to discuss and help talk through.

Help with information and services supporting parent(s) / grandparent(s) with cancer to explain cancer and its treatment to children. Michele wrote the "Caring for my family with cancer" children's book. This helps parent(s) with a new cancer diagnosis talk to their children about cancer and treatments. Contact Michele directly for a copy.

Give written information or links to web sites that can explain more about your illness, its treatment and any future plans about your care.

Help with information you may have questions about.

With your approval, help with speaking to your doctor or other health professional.

Michele works with the bereavement counsellor in City Hospice, Cardiff running a Children's bereavement group twice yearly.

The Welfare Rights Team

As a Welfare Rights advisors, we can help in applications for:

Health related benefits (Employment and Support Allowance, Personal Independence Payment, Attendance Allowance)

Carers Allowance -

Means tested benefits and Tax Credits, carrying out benefit checks

Disabled parking badges -

Benefit tribunals

Grants

The Patient and Carer Information Manager

Supporting bespoke information and support for patients, families and carers.

Helping with information about travel insurance, local support and finding the information you need.

Support with carers assessments, befriending services, local groups and what support may be in your area.
Information centre open 24/7. Provides extensive library of information in a range of formats and languages. Situated next to Parkside Dining Room.

Hospital Chaplaincy

Providing a confidential service in spiritual and pastoral care. Religious support for patients, relatives, staff and students.

Always ready to listen and trained to help you make sense of all that may be happening to you.

Can contact other faiths or religions on your behalf.

A multi faith room situated on the main corridor for spiritual needs that supports most faiths.

Rhagor o wybodaeth / More information

Tîm gofal cefnogol / Supportive care team
E-bost/Email: vcc.supportivecare@wales.nhs.uk
Ffôn/Tel: 02920 196132

Cyngor ar fudd-daliadau / Benefits team
E-bost/Email: vcc.supportivecare@wales.nhs.uk
Ffôn/Tel: 02920 316277

Patient Information

Cysylltwch â / Please contact Leigh-Anne Porter,
Ffôn/Tel: 02920 196132 ar/or 02920 615888
Bleep/Bleep 237.

Chaplain

Gofynnwch i aelod staff / Ask a staff member
E-bost/Email: vcc.supportivecare@wales.nhs.uk

"The Velindre benefits advisors
really helped at a time when I
needed it most. Can't thank
you enough"

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Supportive Care - Lead Nurse, Michele Pengelly Michele can help support you and your family whilst you are here through: Listening to things you want to discuss and help talk through. Help with information and services supporting parent(s) / grandparent(s) with cancer to explain cancer and its treatment to children.

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Radiotherapy Review

If you have any concerns or you are suffering from side effects from your radiotherapy treatment please contact the Radiotherapy Review team on 02920 615888 ext 6421

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The Clinical Psychology team can be contacted on 029 2019 6141

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Are there any foods to eat or avoid if I have prostate cancer?

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You may have heard of certain foods or dietary supplements that could be helpful or harmful for men with prostate cancer. Unfortunately, there isn't strong evidence for any of them. Instead, it's best to have a healthy, balanced diet.

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Velindre is Wales' premier cancer centre, providing care, support and treatment to cancer patients and their families

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Computed Tomography (CT scans), sometimes also known as Computed Axial Tomography (CAT), is a painless and sophisticated imaging procedure.

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Chemotherapy Patient Education - Velindre Cancer Centre

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Your doctor has asked us to do a radioisotope ‘scan’. This is a test which uses a small amount of radioactivity to produce pictures of bones, organs and other parts of the body.

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Positron emission tomography (PET) scans produce detailed 3-dimensional images of the inside of the body.
The images can clearly show the part of the body being investigated, including any abnormal areas, and can highlight how well certain functions of the body are working.

PET scans are often combined with CT scans to produce even more detailed images. This is known as a PET-CT scan.

They may also occasionally be combined with an MRI scan (known as a PET-MRI scan).

Why PET scans are used

A PET scan can show how well certain parts of your body are working, rather than simply showing what they look like.

PET scans are particularly helpful for investigating confirmed cases of cancer to determine how far the cancer has spread and how well it's responding to treatment.

PET scans are sometimes used to help plan operations, such as a coronary artery bypass graft or brain surgery for epilepsy.

They can also help diagnose some conditions that affect the normal workings of the brain, such as dementia.

How PET scans work

PET scanners work by detecting the radiation given off by a substance injected into your arm called a radiotracer as it collects in different parts of your body.

In most PET scans a radiotracer called fluorodeoxyglucose (FDG) is used, which is similar to naturally occurring glucose (a type of sugar) so your body treats it in a similar way.

By analysing the areas where the radiotracer does and does not build up, it's possible to work out how certain body functions are working.

For example, using FDG in the body's tissues can help identify cancerous cells because they use glucose at a much faster rate than normal cells.

Preparing for a PET scan

PET scans are usually carried out on an outpatient basis. This means you won't need to stay in hospital overnight.

It's important you arrive on time because the radiotracer used for your scan only works well for a short time. Your scan may have to be cancelled if you're late.

Your appointment letter will mention anything you need to do to prepare for your scan.

Usually, you'll be advised not to eat anything for 6 hours beforehand, but you can drink water.

You should also avoid strenuous exercise for 24 hours before your appointment.

It's a good idea to wear loose, comfortable clothes. It may be possible to wear these during the scan, although sometimes you may be asked to change into a hospital gown.

Avoid wearing jewellery and clothes that have metal parts, such as zips, because these will need to be removed.

If you're claustrophobic, ask the hospital staff before the day of the scan about the possibility of having a mild sedative to help you relax.

What happens during the scan

Radiotracer injection

The radiotracer is injected into a vein in your arm or hand about an hour before your scan, as it takes time for it to reach the right cells in your body.

It's important to relax, keep as still as possible, and avoid talking while you wait because moving and speaking can affect where the radiotracer goes in your body.

You can go to the toilet if you need to before having the scan.

The scan

During the scan, you lie on a flat bed that's moved into a large, cylindrical scanner.

Stay still and don't talk while the scanner takes pictures of your body.

The scan usually takes 30 to 60 minutes. Having the scan is completely painless, but you may feel uncomfortable lying still for this long.

The medical team can see and talk to you throughout the scan.

After the scan

You shouldn't experience any side effects after having a PET scan and can usually go home the same day.

The results of your scan won't usually be available on the same day. They'll be sent to your specialist to be discussed at your next appointment.

Possible risks of a PET scan

Any exposure to radiation carries a very small risk of potential tissue damage that could cause cancer at a later date.

But the amount of radiation you're exposed to in a standard PET scan is safe.

The radiotracer becomes quickly less radioactive over time and will usually be passed out of your body naturally within a few hours. Drinking plenty of fluid after the scan can help flush it from your body.

As a precaution, you may be advised to avoid close contact with pregnant women, babies and young children for a few hours after having a PET scan. This is because you'll be slightly radioactive during this time.

The CT component of a PET-CT scan also involves exposure to a small amount of additional radiation, but the risk of this causing any problems in the future is still very small.

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Find out about positron emission tomography (PET) scans and how these three-dimensional images of the inside of the body can be used.

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Docetaxel is a chemotherapy drug used to treat many types of cancer.

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Macmillan Holistic Needs Assessment (HNA)

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Macmillan Holistic Needs Assessment (HNA)

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Macmillan Holistic Needs Assessment

You will be offered a holistic needs assessment. This brief video will show you the benefits of completing one. If feel you would benefit from one please contact Cancer Support Navigator on ext:4900

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The electronic Holistic Needs Assessment (eHNA) is a web-based means of providing a Holistic Needs Assessment (HNA) in a way that's simple and secure. All you'll need is a digital device, such as a smartphone, tablet or computer with a web browser.

In the video below healthcare professionals talk more about the benefits of the eHNA.

When using Macmillan's eHNA, the patient's answers are securely sent to the clinician, where they can be developed into a Personalised Care and Support Plan. Allowing the patient to complete the assessment at home on their own device, and then carry out the care planning discussion virtually helps to support some of the new remote ways of working.
The care plan can be printed, saved or shared with the patient and their health care team once it's been completed. Your patient can also access an online portal to check their care plan at any time.

Macmillan's eHNA can also send copies of the completed care plans to many of the trust patient record systems, allowing Personalised Care and Support Plans to form a permanent part of the patient's medical record. Where local trusts work closely together and where patients have complex pathways, we can support the sharing of care plans with other providers so that as the care of the patient moves, visibility of the care plan can move with them.

When your organisation signs up to Macmillan's eHNA, you'll also have access to anonymous data from your own patients for reporting and analysis. This can help you to understand more about the needs of different groups of people. It can also be used to inform the planning and development of local cancer services.

Our Learning Hub has an online community for those using Macmillan's eHNA, which includes: How to videos, webinar recordings of partner organisations explaining their implementation and use of eHNA, frequently asked questions and questions and a useful resources list.

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Holistic Needs Assessment (HNA) | Healthcare professionals

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A Holistic Needs Assessment gives people living with cancer an opportunity chance to think about and discuss their needs and concerns and develop a care plan.

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Diet and physical activity for men with prostate cancer

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Find out how a healthy diet and regular physical activity may help to manage the effects of prostate cancer and its treatment. From Prostate Cancer UK’s award-winning Health Information team.

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Cabazitaxel is also called Jevtana ®. It is used to treat prostate cancer that has spread to other parts of the body. This is called advanced prostate cancer or metastatic prostate cancer.

It is best to read this information with our general information about chemotherapy. Your doctor will talk to you about this treatment and its possible side effects before you agree ( consent) to have treatment.

You will be given cabazitaxel in the chemotherapy day unit or during a stay in hospital. A chemotherapy nurse will give it to you.

During treatment you usually see a cancer doctor, a chemotherapy nurse or a specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information.

Before or on the day of treatment, a nurse or person trained to take blood (phlebotomist) will take a blood sample from you. This is to check that your blood cells are at a safe level to have chemotherapy.

You will see a doctor or nurse before you have chemotherapy. They will talk to you about your blood results and ask you how you have been feeling. If your blood results are okay, the pharmacist will prepare your chemotherapy. Your nurse will tell you when your treatment is likely to be ready.

Your nurse usually gives you anti-sickness (anti-emetic) drugs before the chemotherapy. You may have the chemotherapy drugs through:

a cannula - a short, thin tube the nurse puts into a vein in your arm or hand

a central line - a fine tube that goes under the skin of your chest and into a vein close by

a PICC line - a fine tube that is put into a vein in your arm and goes up into a vein in your chest

an implantable port (portacath) - a disc that is put under the skin on your chest or arm and goes into a vein in your chest.

Your course of chemotherapy

You usually have a course of several cycles of treatment over a few months. Each cycle of cabazitaxel usually takes 21 days (3 weeks). You have the drug on the first day of each cycle.

You are also given prednisolone tablets (a type of steroid) which you take each day. Your nurse or doctor will discuss your treatment plan with you.

We explain the most common side effects of this treatment here. We also include some less common side effects.

You may get some of the side effects we mention, but you are unlikely to get all of them. If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.

Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.

More information

We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.

Some people may have side effects while they are being given the chemotherapy or shortly after they have it:

Allergic reaction

Some people have an allergic reaction while having this treatment. Before treatment, you will be given medicines to help prevent or reduce any reaction.

Signs of a reaction can include:

feeling hot or flushed

shivering

itching

a skin rash

feeling dizzy

a headache

feeling breathless or wheezy

swelling of your face or mouth

pain in your back, tummy or chest.

Your nurse will check you for signs of a reaction during your treatment. If you feel unwell or have any of these signs, tell them straight away. If you do have a reaction, it can be treated quickly.

Sometimes a reaction happens a few hours after treatment. If you develop any signs or feel unwell after you get home, contact the hospital straight away.

Risk of infection

This treatment can reduce the number of white blood cells in your blood. These cells fight infection. If the number of white blood cells is low, you are more likely to get an infection. A low white blood cell count is sometimes called neutropenia.

An infection can be very serious when the number of white blood cells is low. It is important to get any infection treated as soon as possible. Contact the hospital straight away on the 24-hour contact number you have been given if:

your temperature goes over 37.5°C (99.5°F)

you suddenly feel unwell, even with a normal temperature

you have symptoms of an infection

your temperature goes below 36°C (96.8°F).

Symptoms of an infection include:

feeling shivery and shaking

a sore throat

a cough

breathlessness

diarrhoea

needing to pass urine (pee) a lot, or discomfort when you pass urine.

It is important to follow any specific advice your cancer treatment team gives you.

The number of white blood cells will usually return to normal before your next treatment. You will have a blood test before having more treatment. If your white blood cell count is low, your doctor may delay your treatment for a short time, until your cell count increases.

You may be given a drug called G-CSF. This encourages the body to make more white blood cells. You have it as a small injection under the skin.

Bruising and bleeding

This treatment can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot.

If the number of platelets is low, you may bruise or bleed easily. You may have:

nosebleeds

bleeding gums

heavy periods

blood in your urine (pee) or stools (poo)

tiny red or purple spots on the skin that may look like a rash.

Tell your doctor if you have any unexplained bruising or bleeding. You may need a drip to give you extra platelets. This is called a platelet transfusion.

Anaemia (low number of red blood cells)

This treatment can reduce the number of red blood cells in your blood. Red blood cells carry oxygen around the body. If the number of red blood cells is low, this is called anaemia. You may have symptoms such as:

pale skin

lack of energy

feeling breathless

feeling dizzy and light-headed.

Tell your doctor or nurse if you have these symptoms.

If you are very anaemic, you may need a drip to give you extra red blood cells. This is called a blood transfusion.

Diarrhoea

This treatment may cause severe diarrhoea. Diarrhoea means passing more stools (poo) than is usual for you, or having watery or loose stools. If you have a stoma, it will be more active than usual.

Your hospital team may give you anti-diarrhoea drugs to take at home.

If you have diarrhoea or a mild increase in stoma activity:

Contact the hospital straight away if:

you have diarrhoea at night

you have diarrhoea more than 4 times in a day

you have a moderate or severe increase in stoma activity

the anti-diarrhoea drugs do not work within 24 hours.

You may need to go to hospital to have fluids through a drip.

Tummy pain

You may get pain or discomfort in your tummy (abdomen). You may feel bloated, or have indigestion or wind. Your doctor can give you drugs to help with these symptoms. Tell them if the pain gets worse, or does not get better.

Rarely, cabazitaxel may cause more serious bowel problems such as a hole (perforation) in the bowel. If you have sudden or severe pain in your tummy, tell your doctor straight away.

It is also very important to let them know if:

Constipation

This treatment can cause constipation. Constipation means that you are not able to pass stools (poo) as often as you normally do. It can become difficult or painful. Here are some tips that may help:

If you have constipation, contact the hospital for advice. Your doctor can give you drugs called laxatives to help.

Feeling sick

Your doctor will give you anti-sickness drugs to help prevent or control sickness during your treatment. Take the drugs exactly as your nurse or pharmacist tells you. It is easier to prevent sickness than to treat it after it has started.

If you feel sick, take small sips of fluids often and eat small amounts regularly. It is important to drink enough fluids. If you continue to feel sick, or are sick (vomit) more than once in 24 hours, contact the hospital as soon as possible. They will give you advice. Your doctor or nurse may change the anti-sickness drug to one that works better for you.

Feeling tired

Feeling tired is a common side effect of this treatment. It is often worse towards the end of treatment and for some weeks after it has finished. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy.

If you feel sleepy, do not drive or use machinery.

Sore mouth and throat

This treatment may cause a sore mouth and throat. You may also get mouth ulcers. This can make you more likely to get a mouth or throat infection. Use a soft toothbrush to clean your teeth or dentures in the morning, at night and after meals.

If your mouth or throat is sore:

Sucking ice chips may sometimes help relieve mouth or throat pain.

Changes to your taste

You may get a bitter or metal taste in your mouth. Sucking sugar-free sweets may help with this. Some foods may taste different or have no taste. Try different foods to find out what tastes best to you. Taste changes usually get better after treatment finishes. Your nurse can give you more advice.

Hair loss

Your hair will get thinner. Or you may lose all the hair from your head. You may also lose your eyelashes and eyebrows, as well as other body hair. Hair loss usually starts after your first or second treatment.

Scalp cooling is a way of lowering the temperature of your scalp to help reduce hair loss. Your nurse can tell you if this is an option for you.

Your nurse can talk to you about ways to cope with hair loss. There are ways to cover up hair loss if you want to. Your scalp may be sensitive. It is important to cover your head to protect your skin when you are out in the sun.

Hair loss is almost always temporary and your hair will usually grow back after treatment ends.

Muscle or joint pain

You may get pain in your muscles or joints for a few days after treatment. If this happens, tell your doctor so they can give you painkillers. Tell them if the pain does not get better. If you have painkillers you would like to use at home, check with your doctor, nurse or pharmacist whether they are suitable for you.

If you have muscle or joint pain, try:

Effects on the lungs

This treatment can cause changes to the lungs. Tell your doctor if you develop:

You should also tell them if any existing breathing problems get worse. You may have tests to check your lungs.

Urine infection

Let your doctor know if:

If you think you may have an infection, try to drink lots of fluids.

Numb or tingling hands or feet (peripheral neuropathy)

This treatment may affect the nerves, which can cause numb, tingling or painful hands or feet. You may find it hard to fasten buttons or do other fiddly tasks.

Tell your doctor if you have these symptoms. They sometimes need to lower the dose of the drug. The symptoms usually improve slowly after treatment finishes. But for some people they may never go away. Talk to your doctor if you are worried about this.

Build-up of fluid

Your arms and legs may swell because of fluid building up. Tell your doctor or nurse if this happens. They may give you medicines that can help. The swelling will usually get better when treatment finishes.

Nail changes

This treatment can affect your fingernails and toenails. They may grow more slowly or break more easily. You might notice ridges or white or dark lines across your nails. Sometimes nails can become loose or fall out. When treatment finishes, any changes usually disappear as the nails grow out. There are things you can do to look after your nails:

Keep your nails clipped short.

Wear gloves to protect your nails when you are doing things in the house or garden.

Moisturise your nails and cuticles regularly.

Keep your hands and nails clean to help avoid infection, but avoid bathing in very hot water.

If your toenails are affected, wear well-fitted shoes to cushion them.

If you notice changes to your nails, tell your doctor or nurse. They can give you advice or arrange for you to see a podiatrist for foot care advice if needed.

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.

You can help reduce the risk of developing a blood clot by:

staying active during treatment

drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

Other medicines

Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

Vaccinations

Vaccinations can reduce your risk of getting certain infections. Your doctor or nurse may talk to you about having vaccinations.

Doctors usually recommend that people with cancer have a flu vaccination and a coronavirus (covid) vaccination. These are both inactivated vaccinations that can help reduce the risk of infection. People with weak immune systems can have these, as they are not live vaccinations.

If your immune system is weak, you need to avoid live vaccinations. This is because they can make you unwell. Live vaccines contain a very weak version of the illness they are vaccinating you against. Your cancer doctor or GP can tell you more about live and inactivated vaccinations.

Fertility

Some cancer drugs can affect whether you can make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

Sex

If you have sex in the first few days after this treatment, you should use barrier protection such as a condom. This will protect your partner if any of the drug is in your semen.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.

If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.

This information has been written, revised and edited by Macmillan Cancer Support's Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.

Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF's 10 criteria for trustworthy health information.

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Cabazitaxel is also called Jevtana ®. It is used to treat prostate cancer that has spread to other parts of the body. This is called advanced prostate cancer or metastatic prostate cancer. It is best to read this information with our general information about chemotherapy.

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Pelvic floor muscles sit below the bladder and bowel, supporting them and helping to control when you urinate (pee) or empty your bowels. Read more about how pelvic floor muscle exercises can help with urinary problems.

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Many patients who are faced with a cancer diagnosis report a reduction in quality of life and limitations in carrying out basic activities of daily living (ADLs). These limitations in function may be due to the cancer itself, but many are actually a result of treatment-related side effects. Cancer-related disability arises from these limitations.  Occupational Therapy carries out a wide range of interventions following a comprehensive assessment.  These are available via face to face appointments, video call or telephone call. Some of these may include:

• Assessments to support day to day function

• Provision of aids / adaptations

• Seating and wheelchair assessment

• Cushion assessment for management of pain or discomfort in sitting

• Fatigue Management / Anxiety Management

• Support with memory and cognitive difficulties

• Vocational Rehabilitation (returning to work / accessing employment)

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Information leaflet for patients having a PICC line (peripherally inserted central catheter) put in at
Velindre Cancer Centre

This leaflet provides information for patients having a PICC line. It will explain what a PICC line is, and what to expect on the day that the PICC line is placed. It will tell you how your PICC line is cared for and what you need to look out for. Contact telephone numbers are at the end of the leaflet.

What is a PICC line?

A PICC line is a long hollow tube that is inserted into a vein in your upper arm and travels along the vein in your shoulder and chest until it reaches the large vein above your heart. It is used to give treatments such as chemotherapy, antibiotics and intravenous fluids. It can also be used to take blood samples. A specially trained nurse will place the PICC in the X-ray department in Velindre or the Macmillan unit in Prince Charles hospital if you live in that area.

A PICC line is also called a central line.

Why do I need a PICC line?

You need a PICC line for one of the following reasons:

The type of treatment that your doctor has prescribed you can only be given through a central line

The PICC line can be used instead of placing needles into your arms which can be painful

You may need treatment which needs to be given to you at home through a special pump

The small veins in your arms or back of your hands may have become sore after previous treatments

How long does my PICC line stay in?

Your PICC line can stay in until your treatment has finished as long as it is free from complications.

Will I need any tests before the PICC line goes in?

We need to know if you take blood thinning drugs such as warfarin, clopidogrel or heparin injections such as Fragmin. If you take warfarin you will need to arrange an INR blood test the day before your PICC line is placed. If you take warfarin please ring 029 2061 5888 and ask for the PICC clinic in X-ray (all days except Tuesdays - on Tuesday please ask for the treatment helpline) at least two days before your PICC line appointment. If you take blood thinning injections we will need to advise you when to take it. We will ring you one or two days before the PICC - if we have not managed to contact you, please ring the above number.

We need to test you for MRSA (a bacteria that many people carry harmlessly on their skin) before your PICC line is placed. We will take a swab of your groin and nose. Most people will be negative. If you are positive we can give you creams and lotions to reduce the risk of your PICC becoming infected with MRSA. If an MRSA screen has not been taken, please ring 02920615888 and ask for the PICC clinic.

If you are unable to attend for your PICC appointment please telephone 0290 615888 and ask for the PICC clinic.

Can I eat and drink as normal?

You can eat breakfast or have a light lunch. You can drink normally.

What do I need to wear?

You can wear your normal, everyday clothes. You may be asked to change into a gown. We will ask you to remove any jewellery from your neck. Women will be asked to remove their bra if it is under-wired before the procedure - therefore try to wear a bra without under wires if possible.

What happens on the day of my appointment?

You can bring one relative to come into the room with you. We will give you information about the procedure and discuss possible complications. We will then ask you to sign a consent form.

The nurse will wear a mask, gown, hat and gloves when placing your PICC line to make sure that everything is kept as clean as possible. We will also use drapes to make sure that the surrounding area is kept clean.

We will give you an anaesthetic injection into a small area of your arm before the PICC line goes in, the procedure is not painful. Once the PICC is in, you will have an X-ray to make sure it is in the right place.

The appointment should take less than 2 hrs.

How does the PICC stay in place?

The PICC is not stitched in place. It is kept in place by a device called a securacath (see picture below). It anchors the PICC under the skin. The securacath will be placed when the PICC goes in and removed when the PICC comes out. A clear dressing will be placed over the PICC and the securacath device. A loose sleeve (tubigrip) will be placed over your arm to protect it.

Sometimes, you can feel some irritation from the securacath anchors which are beneath the skin for a few days after the PICC has gone in. This is normal and we expect a settling in period. If the area is painful, please ring Velindre for advice.

Can I drive home after the PICC has been put in?

You can drive home after having your PICC line placed as long as you feel fit and able to drive.
What problems could happen with the PICC line when I'm at home?
Your PICC nurse will discuss the possible complications in more detail before you sign your consent form. Possible complications include:

Infection

Blood clot in the vein (thrombosis)

Blocked line (occlusion)

Bleeding

What should I look out for whilst my PICC line is in?

If you notice any of the following please contact Velindre Cancer Centre without delay. The telephone number is at the end of the booklet.

Feeling 'shivery' or unwell after the PICC has been flushed

Any redness or pain at the site where the PICC goes into the skin

Swelling or redness of your arm, neck or shoulder

The PICC line looks longer or shorter than when it went in

Fluid or puss leaking around the skin where your PICC line enters your arm

Your skin feeling sore or uncomfortable under the dressing

The securacath (orange securing device) is painful under the skin

Who looks after my PICC line?

Your PICC line needs to be cleaned and flushed every week and this is shared between Velindre Cancer Centre and the community nurses. We also ask you to have some responsibilities. These are:

To check your PICC every day using the alert card and report any problems as soon as possible to Velindre Cancer Centre

To use your arm normally - this is important to reduce the risk of some complications.

To know when your PICC line has been flushed and dressed

To keep your PICC line dry at all times

If you are having daily radiotherapy treatment your dressing may be changed and your PICC line flushed in Velindre. Please tell your PICC nurse if you are to receive daily radiotherapy treatment.

Are there any activities that I shouldn't do with a PICC line in my arm?

You can carry on with your normal activities when you have a PICC line in place but there are some things you need to avoid. You should not swim, weight-lift, play golf, carry very heavy items or use heavy rucksacks.

What about showering or bathing?

You will need to keep your PICC line dry when you shower or bath. This is very important as it can cause the dressing to loosen or cause an infection. A waterproof sleeve will be given to you on the day of your appointment for the PICC

Contact telephone numbers

We hope that this leaflet has answered your questions.
If you have any further questions or problems with your PICC please contact:

Velindre Cancer Centre 029 2061 5888
If you are unwell at home or need to talk to anyone about your PICC ask for the treatment helpline or nurse in charge after 4.30 or weekends.

A short video can be found explaining the insertion procedure on the Macmillan website.

This leaflet was written by health professionals. The leaflet has been approved by doctors, nurses and patients. It is reviewed and updated annually.

Author: Meinir (Min) Hughes. Intravenous Access Specialist Nurse

Updated Jan 2018

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This leaflet provides information for patients having a PICC line. It will explain what a PICC line is, and what to expect on the day that the PICC line is placed. It will tell you how your PICC line is cared for and what you need to look out for.

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Treatments for prostate cancer can cause sexual difficulties. You may have side effects that make having sex difficult or make you feel less interested in sex.

The language we use

We want everyone affected by cancer to feel our information is written for them.

We try to make sure our information is as clear as possible. We use plain English, avoid jargon, explain any medical words, use illustrations to explain text, and make sure important points are highlighted clearly.

We use gender-inclusive language and talk to our readers as 'you' so that everyone feels included. Where clinically necessary we use the terms 'men' and 'women' or 'male' and 'female'. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected. Our aims are for our information to be as clear and relevant as possible for everyone.

You can read more about how we produce our information here.

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Treatments for prostate cancer can cause sexual difficulties. You may have side effects that make having sex difficult or make you feel less interested in sex. We want everyone affected by cancer to feel our information is written for them. We try to make sure our information is as clear as possible.

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We are so excited to share this brand new free app with you, which has been created by the Psychology team here at Velindre Cancer Centre and funded with the support of Michele Pengelly via the Welsh Carers Fund.

The App is deliberately non-cancer specific so that anyone can use mindfulness as a tool to manage stress and anxiety.

In particular, the App is really useful to help support patients through their cancer experience.  Listeners will be guided through mindfulness exercises to help improve mental health and wellbeing and can be used before, during or after hospital treatment. There is also a relaxation element to the App which has been provided courtesy of the Occupational Therapy team here at Velindre.

Velindre encourages everyone to use the Mindfulness App.

Download the app now:

Google Play: https://play.google.com/store/apps/details?id=com.velindrecc.mindfulness&hl=en_GB

App Store: https://itunes.apple.com/gb/app/velindre-mindfulness-app/id1450624693?mt=8

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Helping Hands Rhymney | Cancer Self Help Group

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Welcome To Helping Hands

Rhymney Cancer Self-Help Group

Helping Hands is a registered charity that was founded in 1994. It is based in the 5 communities of Rhymney, Pontlottyn, Abertysswg, Deri and Fochriw. We provide various services to help people in these communities. When someone is seriously ill they are unable to cope with endless forms and assessments; all they want is immediate help and that is our aim; to make the carer's life easier and the patient's life more comfortable. If you feel that you have a need, please contact us on our contact form. Or, if you feel that you can help us in any way, we would be delighted to hear from you.

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HOME - Helping Hands Rhymney | Cancer Self Help Group

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Helping Hands is a registered charity that was founded in 1994. It is based in the 5 communities of Rhymney, Pontlottyn, Abertysswg, Deri and Fochriw. We provide various services to help people in these communities.

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Cardiff & South East Wales Support Groups

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Cardiff & South East Wales Support Groups

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Many people find it helpful to share their experiences with others who understand what they’re going through. There are many support groups in South East Wales for people affected by cancer. The Patient Information Centre stocks leaflets on local and national support groups.

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Speaking to someone about my fatigue made me more aware of it and so I was able to work against it in a more effective way. Being told it was possible to change things also helped. It was good to have fatigue recognised as a problem that can be changed.

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Speaking to someone about my fatigue made me more aware of it and so I was able to work against it in a more effective way. Being told it was possible to change things also helped. It was good to have fatigue recognised as a problem that can be changed.

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Information for patients receiving a blood
transfusion at Velindre Cancer Centre

This leaflet provides information for patients receiving a blood transfusion at Velindre Cancer Centre. It will explain why you're having a blood transfusion and where and how it will be given. It will also tell you about the care and services you will receive during your stay. Contact telephone numbers and details of how to obtain further information on blood transfusions are given at the end of the leaflet.
Why do I need to have a blood transfusion?
You need to have a blood transfusion because you are anaemic. This means that you do not have enough red blood cells in your body. This can make you feel very tired (lethargic) and that you have no energy. It may also make you feel breathless.

Having a blood transfusion will help to increase your red blood cells. This will alleviate the symptoms of anaemia. You should feel the benefits of the blood transfusion within 24 hours. However these benefits may be short lived so you may need further blood transfusions.

Where will I receive my blood transfusion?
You will receive your blood transfusion on the Ambulatory Unit. This is situated on the ground floor of Velindre Cancer Centre. You will be offered a comfortable reclining chair to sit in whilst you receive your blood transfusion.

What facilities are on Ambulatory Unit?
There are a selection of magazines and books available. DVDs are also available on request. There are toilets on the unit. Hot and cold drinks are provided.

How long will I need to stay?
The length of time you will need to stay depends on how many units of blood your doctor has prescribed. The first unit of blood is given slowly, it usually takes about 2 hours. Other units usually take about 1½ hours unless your doctor requests a slower rate.

When your doctor is arranging your appointment you will be told how many units of blood you will receive. This will help you to calculate how long you will stay.

Can somebody stay with me?
Currently due to the need to ensure 2m space between patients during COVID-19 we do not usually allow anyone to stay with you during your transfusion. If you have any concerns about this please speak to your team before your treatment starts. We may be able to make some exceptions but we will need to be aware of this before the day of treatment.

What should I wear?
You should wear comfortable clothing. Most patients wear their normal everyday clothes.

How will my blood transfusion be given?
Your blood transfusion will be given by a drip through a tiny tube directly into a vein in your arm. The
drip is connected to a pump fitted onto a drip stand. The pump regulates the rate that your blood transfusion is given. If you have a special line in place, for example a PICC or Hickman line, then your blood transfusion can usually be given through this.

The nurses will monitor you during your blood transfusion. They will regularly check your temperature, pulse and blood pressure and make sure that you are comfortable and that the drip is flowing at the correct rate.

Can I move around Ambulatory Unit whilst having my blood transfusion?
Yes, you can move around. Your drip stand has wheels so you can push this yourself, or ask a nurse to help you.

What about any tablets and medicines that I usually take?
It is important that you bring these in with you to show the nurses. You can continue taking these as usual unless you are advised not to.

What are the risks associated with having a blood transfusion?
All medical procedures and therapies involve some degree of risk. These need to be balanced against the risk to your health of not having a blood transfusion.

The biggest risk from a blood transfusion is being given the wrong blood. We will ask for your full name and date of birth and this identification will be used to check each bag of blood that is given.

The risks of getting an infection from a blood transfusion are very low. All blood products are carefully checked and tested for viruses or impurities to minimise any risk to you.

The risk of contracting HIV or HTLV (Human T-Cell Lymphotropic Virus) infection from a blood transfusion is about 1 in 5 million. The risk of contracting hepatitis is 1 in 500,000 for hepatitis B and 1 in 30 million for hepatitis C.

The risk of getting variant Creutzfeldt-Jakob disease (vCJD) from a single blood transfusion is very low, although this risk increases with additional blood transfusions. Each year approximately 2 million units of blood are transfused in England and there have been just a handful of cases where patients are known to have become infected with vCJD.

Are there any side effects?
Most people do not experience side effects whilst having a blood transfusion. However, it is important that you tell the nurses immediately if you feel unwell in any way. For example if you feel hot or feverish, notice any itching or rashes, feel sick or experience any lower back or loin pain.

What will happen when my blood transfusion is finished?
Your nurse will disconnect the drip and apply a dressing to your arm when your blood transfusion has finished. The nurses will give you any specific information or instructions before you go home.

If you have concerns you can contact us using the telephone numbers listed below.
Contact telephone numbers
Further information and advice is available from:

Rhosyn Day Unit 029 2061 5888 ext 6352
Monday - Friday 8am - 5pm

For booking enquiries 029 2061 5888 ext 6248

Macmillan Cancer Support 0808 808 0000 - www.macmillan.org.uk

National Blood Service- www.welsh-blood.org.uk

This leaflet was written by health professionals. Sources of information include the Handbook of Blood Transfusion Medicine, the Blood Component Transfusion Policy of Velindre NHS Trust and the Welsh Blood Service leaflet 'Will I need a blood transfusion?' The information contained in this leaflet is evidence based. The leaflet has been approved by doctors, nurses and patients. It is reviewed and updated every 2 years.

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Information for patients receiving a blood transfusion at Velindre Cancer Centre This leaflet provides information for patients receiving a blood transfusion at Velindre Cancer Centre. It will explain why you're having a blood transfusion and where and how it will be given. It will also tell you about the care and services you will receive during your stay.

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Sign up for a weekly phone call or visit from one of our trained Macmillan Buddies. Our volunteers are here to talk so you don’t have to face cancer alone.

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Hair loss during Cancer Treatment

This leaflet provides information for people who may lose their hair as a result of their cancer treatment. The leaflet explains how to care for your hair during your treatment and how chemotherapy, radiotherapy and hormone therapies may affect your hair. It gives information about headwear options such as scarves, turbans and hats. It also mentions wigs and tells you how to choose, purchase and care for your wig. Websites for further information and local wig suppliers are listed in the back of the leaflet.
Will my treatment cause hair loss?
Some chemotherapy treatments and radiotherapy to the scalp area will cause hair loss. This may vary from hair thinning to complete hair loss. Your doctor, nurse or radiographer will advise you if your treatment is likely to cause hair loss.
Looking after your hair
Even if your hair does not fall out, treatment can make it dry and brittle. There are some simple steps you can take to help look after your hair:

Use a mild shampoo (not baby shampoo)

Use lukewarm not hot water to wash your hair

Try not to wash your hair too often

Pat your hair dry gently with a soft towel

Be gentle when combing or brushing your hair

Avoid hot hairdryers, heated rollers and hair tongs

Avoid using chemicals such as perms or colours

Avoid tying your hair back tightly, use soft hair bobbles

Preparing for hair loss
If you have been told you may lose your hair, you may find it helpful to have your hair cut short before your treatment starts. This will reduce the weight of hair pulling on your scalp so it may minimise hair loss.

Chemotherapy, radiotherapy and hormone therapies affect your hair in different ways:
Hair loss with chemotherapy
You may experience hair thinning or complete hair loss. Occasionally the treatments may also affect eyebrows, eyelashes, nasal hair, beard, moustache and body hair. We will discuss with you what hair loss is usual with your treatment. However, the amount of hair loss varies for each person.

Scalp cooling can be used for some chemotherapy treatments to prevent or minimise hair loss. If scalp cooling can be used with your treatment we will discuss this with you. We also have a leaflet that tells you more about scalp cooling.

Hair loss usually starts 2 - 4 weeks after your first treatment. Occasionally it may be sooner, and for some people it will be later. Your hair will grow back after you have finished treatment. You may even notice some new growth during your treatment. Hair may grow back a slightly different colour and texture.

You should minimise exposure to the sun, and wear a hat and sunscreen if you go out in the sun. Use a mild moisturiser if your head becomes dry or tender.
Hair loss with radiotherapy
You will only lose hair in the area being treated. For example if you have treatment to your breast or chest you may lose some underarm or chest hair; if your head is being treated you will only lose hair on your head. The amount of hair loss depends on the strength of treatment.

Hair loss usually starts after 2 -3 weeks of treatment. Sometimes hair loss can be permanent, this will depend of the strength of the treatment. Your doctor, nurse or radiographer will discuss this with you.

If your hair does grow back it can take 2 - 3 months, and the re-growth may be patchy. Your hair may not be as thick as it was before your treatment.

You should not expose the treated area to the sun during your treatment and for a year afterwards. Please wear a hat and use SPF 30 sunscreen on the treated area.
Hair loss with other cancer treatment
Some other cancer treatments such as hormones may cause hair thinning, or make your hair dry and brittle. Your hair should start to thicken within a few weeks of finishing treatment.
How will my hair fall out?
You will notice an increase in hair loss when you brush or wash your hair. You will also notice hair on your pillow. If you have been told to expect complete hair loss, once this process has started the hair loss usually occurs quickly over a few days to weeks.
Will losing my hair be painful?
Some patients having chemotherapy experience tingling of the scalp or discomfort when the hair starts to fall out. Mild pain killers can help (whatever you normally take for a headache).

However with radiotherapy, tingling, discomfort and reddening of the scalp could be a side effect of treatment.
Hair loss and body image
Losing your hair can change how you think and feel about yourself (body image), and may affect your self-confidence. You can speak to your doctor, nurse or radiographers if this has affected you. Macmillan and Breast Cancer Care produce leaflets that you may find helpful. These are available from the Patient Information Centre or see page 8 for their website details and helpline numbers.
Head coverings
If you want to cover your head, there are lots of options available. Scarves, turbans and hats come in a variety of styles and colours and are widely available from department stores. The Velindre gift shop stocks a selection of turbans.
HeadStrong
Velindre Cancer Centre run HeadStrong sessions which offer practical information and support around hair loss. You will be given a private appointment with a trained advisor. They will show you how to make the most of scarves, hats and hairpieces. This service is available to anyone who is likely to lose their hair through treatment for cancer.

This service is currently unavailable due to covid restrictions. If you visit www.cancerhaircare.co.uk there are helpful advice and tips about headscarves.

HeadStrong is available at Chemotherapy Out-Patients every Wednesday between 10am - 3pm. Please phone 029 2019 6132 for more information or to book an appointment.
Eyebrows and eyelashes
Losing your eyebrows and eyelashes can change your appearance. You can use an eyebrow pencil to redraw your eyebrows. Beauty counters in department stores can show you how to do this. Some cosmetic salons tattoo new eyebrows. You can also buy false eyebrows and false eyelashes.

The Maggie's Centre run the Look Good ... Feel Better sessions which give expert advice on make up and skin care. They are free and you will receive a gift bag of products. This can boost your morale as well as allowing you to spend an enjoyable afternoon with other women who have either had or are having treatment. Please contact 029 2240 8024 for more information or to book a place.
Wigs
You may want to wear a wig or hairpiece. Wigs are available in many different styles and colours.

We usually talk about wigs during your out-patient appointment when first discussing your treatment. You will be given a leaflet with wig suppliers on page 9 of the leaflet. You can choose any wig supplier from the list.

Velindre Cancer Centre can, if needed, subsidise the cost of your wig up to £100.00. This covers the cost of most wigs. If the wig you choose costs more than £100 you will need to pay the difference. If you would like a wig referral request form please contact Leigh Porter on 029 2019 6132, this telephone has an answerphone so if unavailable, please leave a message.
How do I choose a wig?
Your wig supplier will show you a catalogue of styles and colours to help you choose. You can try them on to find the one that you feel most comfortable and happy with.

Your wig supplier will give you specific advice on caring for your wig. It can be cut and styled to your personal requirements. Some wig suppliers may charge for this. Or your usual hairdresser should be able to do this for you.
When your hair grows back
Your hair will grow back at the same rate as normal hair growth, which is about half an inch per month. It will be very fine at first but will become thicker. Your scalp may become scaly as your hair grows back. When it is very short you can use aqueous cream to wash your hair. It produces lather and will moisturise your scalp at the same time. As your hair becomes longer you should use a very mild shampoo for frequent use. These do not contain chemicals that dry the scalp and hair.

You should avoid perms, colouring and chemical straightening for at least 3 months after treatment. After this time your hairdresser will be able to assess the condition of your hair and advise you further.

Websites and helplines
Breast Cancer Care - www.breastcancercare.org.uk
0808 800 6000

Look Good ... Feel Better - www.lookgoodfeelbetter.co.uk

Macmillan - www.macmillan.org.uk
0808 808 0000

Tenovus - 0808 808 1010

Macmillan freephone Helpline - 0808 808 0000

Trevor Sorbie's my new hair - www.mynewhair.org

Wigbank - www.wigbank.com
07840 937 574 Dawn

You can recycle your wig when you no longer need it by donating it to Wig Bank or Velindre Cancer Centre. We sell donated wigs with proceeds benefitting the Velindre Cancer Centre charity.

Please note: The wig referral can only be used with the following suppliers.Please telephone the suppliers of your choice to make an appointment

Alternative Look @ Salon Wills
11-13 Castle Arcade Balcony, Cardiff, CF10 2BY
Phone: 029 2022 4475 salonwills@daxbourne.com
Cutting / alteration is available on all wigs.

Inspirations (covers South Wales and South West Wales)
6A Penybont Road, Pencoed, Bridgend CF35 5RA
Phone: 01656 859528 www.inspirationsbridgend.co.uk
Home visits available. Cutting/alteration is available on all wigs
Finalist Specialist Retailer, Bridgend Retail Awards 2014
Also hats and head scarves available.
Peruke
Phillip Mungeam, Holly House, Llancayo Court, Usk NP15 1HY Phone: 01291 672749 or 07768848926.

Email: mungeam902@btinternet.com

Peruke.co.uk

Awarded the prestigious 'Welsh Hall of Fame' for our outstanding work in the hair loss industry for cancer patients

Parking at the office

Disabled facilities

Choice of 500+wigs in over 200 colours

Free cuts on hair regrowth after treatments

Home visits available if eligible

The Wig & Beauty Company
Mobile wig fitting service covering all areas
Abi & Kerry

The Wig & Beauty Company

Allure Aesthetics

Commercial House

Commercial Street

Pontllanfraith

Blackwood

NP12 2JY

07956967260
Email: thewigandbeautycompany@gmail.com

This leaflet was written by health professionals. It has been approved by doctors, nurses and patients. It is reviewed and updated every 2 years.

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This leaflet provides information for people who may lose their hair as a result of their cancer treatment. The leaflet explains how to care for your hair during your treatment and how chemotherapy, radiotherapy and hormone therapies may affect your hair. It gives information about headwear options such as scarves, turbans and hats.

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If you are on Chemotherapy and have any of the following;

Temperature above 37.5 degrees on 2 occasions 30 minutes apart, OR

1 reading of 38 degrees or above

A temperature of below 35.5 degrees

Shaking/shivering episodes

Unusual bruising/bleeding/rashes

Flu like symptoms

Persistent feeling of sickness or vomiting

Diarrhoea-more than 4 episodes in 24hours

Mouth ulcers or a sore mouth

Concerns about your Picc or Hickman line

Please contact the hospital on 02920 615888 and ask for the Treatment Helpline. You may be asked to leave a message so please leave your name, contact telephone number, and hospital number, you will be contacted back as soon as possible.

Please contact the hospital on 02920 615888 and ask for the Treatment Helpline. You may be asked to leave a message so please leave your name, contact telephone number, and hospital number, you will be contacted back as soon as possible.

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Apalutamide (Erleada®) is a hormonal therapy drug used to treat prostate cancer. It can be used for the following:

Prostate cancer that has not spread, but has stopped responding to other hormonal treatments (hormone resistant). This is called non-metastatic castrate-resistant prostate cancer. Apalutamide is used when there is a high risk of the cancer spreading to other parts of the body.

Prostate cancer that has spread to other parts of the body (advanced prostate cancer) and is still responding to hormonal treatment (hormone sensitive). It is used if the person is not having chemotherapy. It is given with other hormonal drugs.

It is best to read this information with our general information about hormonal therapies and prostate cancer.

Your doctor or nurse will talk to you about this treatment and its possible side effects before you agree ( consent) to have treatment.

Hormones are chemicals that our bodies make. Hormones act as messengers and help control how cells and organs work. Hormonal therapies are drugs that change the way hormones are made or how they work in the body.

Prostate cancer needs the hormone testosterone to grow. Almost all testosterone is made by the testicles. A very small amount is made by the adrenal glands, which sit above the kidneys.

Apalutamide blocks the effect of testosterone on prostate cancer cells. This will usually slow down the growth of cancer cells. This can help control advanced prostate cancer or delay the spread of localised prostate cancer or locally advanced prostate cancer to other parts of the body.

Taking apalutamide tablets

Apalutamide comes as tablets you can take at home. You may have apalutamide on its own, or with other drugs. Your nurse or doctor will talk to you about your treatment plan and tell you how many tablets you need to take.

During treatment you will regularly see a cancer doctor, a cancer nurse or specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information. They will ask you how you are feeling. They may check your weight and blood pressure.

Always take the tablets exactly as explained. This is important to make sure they work as well as possible for you. You usually take apalutamide tablets once a day. You can take apalutamide with or without food.

Make sure you:

If you forget to take the tablets, you should take the missed dose as soon as possible within the same day. If a full day has passed, let your doctor or nurse know. Do not take a double dose.

Other things to remember about your tablets:

Keep them in the original package and at room temperature, away from heat and direct sunlight.

Keep them safe and out of sight and reach of children.

If you are sick just after taking the tablets, contact your healthcare team. Do not take another dose.

If your treatment is stopped, return any unused tablets to the pharmacist.

Your nurse or pharmacist may also give you other medicines to take home. Take all your medicines exactly as they have been explained to you. Do not stop taking any of your medicines unless your doctor tells you to.

We explain the most common side effects of this treatment here. We also include some less common side effects.

You may get some of the side effects we mention, but you are unlikely to get all of them. If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here. Always tell your doctor, nurse or pharmacist about any side effects you have.

Your doctor can give you drugs to help control some side effects. It is important to take them exactly as your nurse or pharmacist explains. This means they will be more likely to work for you. Your nurse will give you advice about managing your side effects. After your treatment is over, most side effects start to improve.

Serious and life-threatening side effects

Some cancer treatments can cause severe side effects. Rarely, these may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.

Contact the hospital

Your nurse will give you telephone numbers for the hospital. If you feel unwell or need advice, you can call them at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.

Hot flushes and sweats

Hot flushes are a common side effect of this treatment. During a flush, your neck and face may feel warm and look red. Flushes may last from a few seconds up to 10 minutes. You may have sweats and then feel cold and clammy. Some people feel anxious or irritable during a hot flush.

There are things you can do to try to reduce flushes:

Wear clothes made from natural fabrics, such as cotton.

Wear layers of clothes that you can remove if you feel hot.

Use cotton bed sheets and have layers of bedding that you can remove if you feel hot.

Keep room temperatures cool or use a fan.

Have cold drinks rather than hot ones. Try to avoid drinks with caffeine in them.

You may have fewer hot flushes and sweats as your body adjusts to hormonal treatment. Or your doctor can prescribe drugs to help. Flushes and sweats usually stop a few months after treatment finishes, but some people continue to have them.

You can read more about coping with hot flushes.

Muscle or joint pain

You may get pain in your muscles or joints. If this happens, tell your doctor so they can give you painkillers. Being physically active may help with the pain and keep your joints flexible. Keeping to a healthy weight may help too. Tell your doctor or nurse if the pain does not get better.

Skin changes

This treatment may affect your skin. It may cause a rash, which might be itchy. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day.

Very rarely, this treatment may cause a more serious skin condition. You may have:

a skin rash which then blisters

peeling skin

sores in your mouth, genitals and eyes

flu-like symptoms such as a high temperature and joint pain.

If you have any of these symptoms, call your doctor or the 24-hour number the hospital has given you.

Always tell your doctor or nurse about any changes to your skin. They can give you advice and may prescribe creams or medicines to help. Skin changes usually improve when treatment finishes.

High blood pressure (hypertension)

Apalutamide may cause a rise in your blood pressure. Your doctor or nurse may check your blood pressure before you start taking apalutamide and during your treatment. They may suggest you check and record your blood pressure yourself while at home. You can show the readings to your healthcare team at your appointments.

Diarrhoea

This treatment may cause diarrhoea. Diarrhoea means passing more stools (poo) than is usual for you, or having watery or loose stools. If you have a stoma, it will be more active than usual.

If you have diarrhoea:

Falls and fractures

Apalutamide can increase your risk of falling and breaking a bone (fracture). You may have scans to check your bone health before and during treatment.

Regular exercise, such as walking, can improve your bone health. Eating a healthy diet can help too. Your doctor may prescribe drugs called bisphosphonates to help protect your bones. They may also advise you to take calcium and vitamin D supplements.

Effects on the heart

This treatment can affect the way your heart works. Your doctor may do tests to see how well your heart is working. You may have these tests before, during, and sometimes after treatment.

Contact a doctor straight away if you:

Other conditions can cause these symptoms. But it is important to get them checked by a doctor.

Seizures

Rarely, apalutamide can cause seizures (fits). If you have a seizure, stop taking apalutamide and see a doctor straight away.

Tell your doctor before you start treatment if you:

Contact the hospital straight away if you suddenly feel unwell or:

Effects on the thyroid gland

Apalutamide may cause your thyroid gland to become underactive (hypothyroidism). This means it will not produce the thyroid hormones your body needs. Symptoms of an underactive thyroid include:

feeling tired

being sensitive to cold

putting on weight

being constipated

having a low mood

thinking and moving slowly.

Your doctors can check how well your thyroid gland is working with a blood test. They can give you thyroid hormone tablets if needed.

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.

You can help reduce the risk of developing a blood clot by:

staying active during treatment

drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

Fertility

Some cancer drugs can affect whether you can make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

Contraception

Your doctor will advise you not to make someone pregnant while having this treatment. The drug may harm the developing baby. It is important to use effective contraception during your treatment, and for 3 months after stopping.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.

If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.

Other medicines

Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

This information has been written, revised and edited by Macmillan Cancer Support's Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.

Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF's 10 criteria for trustworthy health information.

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Apalutamide (Erleada®) is a hormonal therapy drug used to treat prostate cancer. It can be used for the following: Prostate cancer that has not spread, but has stopped responding to other hormonal treatments (hormone resistant). This is called non-metastatic castrate-resistant prostate cancer.

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Darolutamide is also known as NUBEQA ®. It is used to treat prostate cancer that has stopped responding to other types of hormonal therapy but has not yet spread to other parts of the body.

Darolutamide (NUBEQA ®) is a hormonal therapy drug used to treat prostate cancer. It is used when treatment has stopped responding to other types of hormonal therapy but has not yet spread to other parts of the body. This is called non-metastatic castrate-resistant prostate cancer.

You usually take darolutamide with your existing hormonal therapy.

It is best to read this information with our general information about hormonal therapies and prostate cancer.

Your doctor will talk to you about this treatment and its possible side effects before you agree ( consent) to have treatment.

Hormones are chemicals that our bodies make. Hormones act as messengers and help control how cells and organs work. Hormonal therapies are drugs that change the way hormones are made or how they work in the body.

Darolutamide aims to slow the spread of prostate cancer to other parts of the body. Prostate cancer cells need the hormone testosterone to grow and spread. Darolutamide blocks the action of testosterone on prostate cancer cells. This stops the cells from growing and dividing.

Taking darolutamide tablets

Darolutamide comes as tablets you can take at home. Your nurse or doctor will talk to you about your treatment plan. They may give you a copy of a treatment plan to take home with you.

During treatment you will regularly see a cancer doctor, a cancer nurse or specialist nurse, and a specialist pharmacist. This is who we mean when we mention doctor, nurse or pharmacist in this information. They will ask you how you are feeling. Your nurse may check your weight and blood pressure.

During treatment, a nurse or person trained to take blood called a phlebotomist will regularly take blood samples from you. This is to check your general health and that your blood cells are at a safe level to have treatment. You will also have regular PSA tests.

The usual dose of darolutamide is 600mg (2 tablets of 300mg) taken 2 times a day. The dose may be reduced for a while if you have a side effect. Always take the tablets exactly as explained. This is important to make sure they work as well as possible for you.

Make sure you:

take the tablets with food

swallow them whole with a glass of water

do not chew, break or crush the tablets

take them at the same time every day

If you forget to take the tablets, you should take the missed dose as soon as you remember before the next dose is due. Do not take a double dose to make up for the forgotten one.

Other things to remember about your tablets:

Keep them in the original package and at room temperature, away from heat and direct sunlight.

Keep them safe and out of sight and reach of children.

If you are sick just after taking the tablets, contact your healthcare team. Do not take another dose.

Get a new prescription before you run out of tablets, and make sure you have plenty for holidays.

If your treatment is stopped, return any unused tablets to the pharmacist.

Do not stop taking any of your medicines unless your doctor tells you to.

We explain the most common side effects of this treatment here. We also include some less common side effects.

You may get some of the side effects we mention, but you are unlikely to get all of them. If you are also having treatment with other cancer drugs, you may have some side effects that we have not listed here.

You will see a doctor, nurse or pharmacist regularly while you are having this treatment. Always tell them about any side effects you have. They can give you drugs to help control most side effects. They can also offer advice to help you cope.

Most side effects can be managed. But sometimes side effects are harder to control. It is important not to stop taking hormonal therapy without telling your doctor. If side effects cannot be managed, your doctor may suggest you take a different type of hormonal therapy.

Serious and life-threatening side effects

Some cancer treatments can cause severe side effects. Rarely, these may be life-threatening. Your cancer doctor or nurse can explain the risk of these side effects to you.

Contact the hospital

Your nurse will give you telephone numbers for the hospital. If you feel unwell or need advice, you can call them at any time of the day or night. Save these numbers in your phone or keep them somewhere safe.

More information

We cannot list every side effect for this treatment. There are some rare side effects that are not listed. You can visit the electronic Medicines Compendium (eMC) for more detailed information.

Tiredness

Feeling tired is a common side effect. Try to pace yourself and plan your day so you have time to rest. Gentle exercise, like short walks, can give you more energy. If you feel sleepy, do not drive or operate machinery.

Muscle or joint pain

You may get pain in your muscles or joints. If this happens, tell your doctor so they can give you painkillers. Being physically active may help with the pain and keep your joints flexible. Keeping to a healthy weight may help too. Tell your doctor or nurse if the pain does not get better.

Skin changes

This treatment may affect your skin. It may cause a rash, which might be itchy. Your doctor or nurse can tell you what to expect. If your skin feels dry, try using an unperfumed moisturising cream every day.

Always tell your doctor or nurse about any changes to your skin. They can give you advice and may prescribe creams or medicines to help. Skin changes usually improve when treatment finishes.

Low number of white blood cells

This treatment can reduce the number of white cells in your blood. This is usually mild. These cells fight infection. Tell your doctor or nurse if you have any signs of an infection. These include:

a cough

a sore throat

diarrhoea

needing to pass urine (pee) often.

Contact your doctor or the hospital straight away if:

your temperature goes over 37.5°C (99.5°F)

you suddenly feel unwell, even with a normal temperature.

Risk of fracture

Darolutamide can increase your risk of a broken bone (fracture). You may have bone density scans to check your bone health before and during treatment.

Doing regular exercise, such as walking, can improve your bone health. Eating a healthy diet can help too. Your doctor may prescribe drugs called bisphosphonates to help protect your bones. They may also advise you to take calcium and vitamin D supplements.

Effects on the heart

This treatment can affect the way your heart works. Your doctor may do tests to see how well your heart is working. You may have these tests before, during, and sometimes after treatment.

Contact a doctor straight away if you:

have pain or tightness in your chest

feel breathless or dizzy

feel your heart is beating too fast or too slowly.

Other conditions can cause these symptoms. But it is important to get them checked by a doctor.

Effects on the liver

This treatment may affect how your liver works. This is usually mild. You will have blood tests to check how well your liver is working.

Blood clot risk

Cancer and some cancer treatments can increase the risk of a blood clot. Symptoms of a blood clot include:

throbbing pain, redness or swelling in a leg or arm

suddenly feeling breathless or coughing

sharp chest pain, which may be worse when you cough or take a deep breath.

If you have any of these symptoms, contact the hospital straight away on the 24-hour contact number you have been given. If you cannot get through to your doctor, call the NHS urgent advice number on 111.

A blood clot is serious, but it can be treated with drugs that thin the blood (anticoagulants). Your doctor or nurse can give you more information.

You can help reduce the risk of developing a blood clot by:

staying active during treatment

drinking plenty of fluids, especially water.

You may be given anticoagulants to help prevent a clot.

Lactose

These tablets contain lactose. Tell your doctor if you have an allergy to lactose.

Other medicines

Some medicines can affect how this treatment works or be harmful when you are having it. Always tell your cancer doctor about any drugs you are taking or planning to take, such as:

medicines you have been prescribed

medicines you buy in a shop or chemist

vitamins, herbal drugs and complementary therapies.

Tell other doctors, pharmacists or dentists who prescribe or give you medicines that you are having this cancer treatment.

You can visit the electronic Medicines Compendium (eMC) for more detailed information about your treatment.

Fertility

Some cancer drugs can affect whether you can get pregnant or make someone pregnant. If you are worried about this, it is important to talk with your doctor before you start treatment.

Contraception

Your doctor will advise you not to make someone pregnant while having this treatment. The drugs may harm a developing baby.

During your treatment and for a week after you stop taking darolutamide, it is important to use:

contraception to prevent pregnancy

a condom if your partner is already pregnant.

Your doctor, nurse or pharmacist can tell you more about this.

Medical and dental treatment

If you need medical treatment for any reason other than cancer, always tell the doctors and nurses you are having cancer treatment. Give them the contact details for your cancer doctor so they can ask for advice.

If you think you need dental treatment, talk to your cancer doctor or nurse. Always tell your dentist you are having cancer treatment.

This information has been written, revised and edited by Macmillan Cancer Support's Cancer Information Development team. It has been reviewed by expert health professionals and people living with cancer.

Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF's 10 criteria for trustworthy health information.

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Darolutamide is also known as NUBEQA ®. It is used to treat prostate cancer that has stopped responding to other types of hormonal therapy but has not yet spread to other parts of the body. Darolutamide (NUBEQA ®) is a hormonal therapy drug used to treat prostate cancer.