About this eBook

This eBook is for anyone who may be having tests for prostate cancer. We hope it answers some of your questions and helps you deal with some of the feelings you may have.

Tests for prostate cancer can be divided into the following 2 groups:

- Diagnostic tests, which are done to find out if you have prostate cancer.

- Staging tests, which are done if you have been diagnosed with prostate cancer. These tests help doctors decide which treatment is most suitable for you.

We cannot advise you about healthcare decisions. You should talk to your doctor, who knows your medical history.

How to use this eBook

This eBook is split into sections to help you find what you need. You do not have to read it from start to finish. You can use the contents list to help you.

It is fine to skip parts of the eBook. You can always come back to them when you feel ready. At the end of the eBook there are details of other organisations that can help.

Quotes

Throughout this eBook, we have included quotes from people who have had tests for prostate cancer. These are from people who have chosen to share their story with us. To share your experience, visit macmillan.org.uk/shareyourstory

For more information

We have other s for people who have been diagnosed with prostate cancer and already know what stage their cancer is:

- Understanding early (localised) prostate cancer

- Understanding locally advanced prostate cancer

- Understanding advanced (metastatic) prostate cancer.

You may also find our information on the PSA test helpful. This can be found on our website at macmillan.org.uk/cancer-information-and-support/diagnostic-tests/psa-test

If you have more questions or would like to talk to someone, call the Macmillan Support Line free on 0808 808 00 00, 7 days a week, 8am to 8pm, or visit macmillan.org.uk

If you would prefer to speak to us in another language, interpreters are available. Please tell us, in English, the language you want to use.

If you are deaf or hard of hearing, call us using NGT (Text Relay) on 18001 0808 808 00 00, or use the NGT Lite app.

We have some information in different languages and formats, including audio, eBooks, easy read, Braille, large print and translations. To order these, visit macmillan.org.uk/otherformats or call 0808 808 00 00.

The prostate

The prostate is a small gland about the size of a walnut. It is divided into 2 lobes and surrounded by an outer layer called the capsule. The prostate gets bigger as you get older.

The prostate is below the bladder, surrounding the first part of a tube called the urethra. The urethra carries pee (urine) from the bladder to the penis. The same tube also carries semen, which is the fluid containing sperm. Just behind the prostate is the back passage (rectum). There are also lymph nodes (sometimes called glands) near the prostate.

The prostate contains muscle tissue and glandular tissue. Glandular tissue releases (secretes) certain substances.

The prostate

What does the prostate do?

The prostate produces a fluid that mixes with sperm from the testicles to make semen. This fluid is stored in 2 tube-shaped glands called the seminal vesicles. They are found just behind the bladder. During sex, the muscle tissue helps force (ejaculate) prostate fluid and sperm into the urethra.

The sex hormone testosterone is made by the testicles. It controls

how the prostate works. Testosterone is responsible for things

like your sex drive, getting an erection, and muscle development.

The prostate also produces a protein called prostate-specific antigen (PSA). This helps to make semen more watery. A blood test can measure PSA. This is called a PSA test. Doctors use it to help diagnose different prostate problems, including cancer.

If you are a transgender woman

People who have a prostate include men, transgender (trans) women and people assigned male at birth. If you are a trans woman and have had genital gender-affirming surgery as part of your transition, you will still have a prostate. It is important to talk to your GP or nurse if you are worried about prostate cancer or have symptoms.

What is cancer?

Cells are tiny building blocks that make up the body’s organs and tissues. Cells receive signals from the body, telling them when to grow and when to divide to make new cells. This is how our bodies grow and heal. These cells can become old, damaged or no longer needed. When this happens, the cell gets a signal from the body to stop working and die.

Sometimes these signals can go wrong, and the cell becomes abnormal. The abnormal cell may keep dividing to make more and more abnormal cells. These can form a lump, called a tumour.

Cells forming a tumour

Not all tumours are cancer. Doctors can tell if a tumour is cancer by taking a small sample of cells from it. This is called a biopsy. The doctors examine the sample under a microscope to look for cancer cells.

A tumour that is not cancer (a benign tumour) may grow, but it cannot spread to anywhere else in the body. It usually only causes problems if it grows and presses on nearby organs.

A tumour that is cancer (a malignant tumour) can grow into nearby tissue.

Sometimes cancer cells spread from where the cancer started (the primary site) to other parts of the body. They can travel around the body in the blood or through lymph fluid which is part of the lymphatic system. When these cancer cells reach another part of the body, they may grow and form another tumour. This is called a secondary cancer or a metastasis.

The lymphatic system

The lymphatic system helps protect us from infection and disease. It is made up of fine tubes called lymphatic vessels. These vessels connect to groups of small lymph nodes throughout the body. The lymphatic system drains lymph fluid from the tissues of the body before returning it to the blood.

Lymph nodes are sometimes called lymph glands. They filter bacteria (germs) and disease from the lymph fluid. When you have an infection, some lymph nodes may swell as they fight the infection.

If prostate cancer cells spread to the lymph nodes, they usually go to the nodes close to the prostate. You may have a scan to check if the cancer has spread to these nodes.

Prostate lymph nodes

Prostate cancer

Prostate cancer is the most common cancer in men in the UK. About 48,600 men are diagnosed with it each year. It is more common over the age of 65. Although it can happen at a younger age, it is uncommon under the age of 50. There is a higher risk of getting prostate cancer at a younger age if you are black or have a strong family history of prostate cancer.

If you are a trans woman or are non-binary or assigned male at birth, you also need to be aware of prostate cancer. Prostate cancer may affect trans women, but there is not enough evidence to know how common this is.

Prostate Cancer UK has detailed information about trans women and prostate cancer.

The LGBT Foundation can also give you confidential advice and support. You can also talk to one of our cancer support specialists.

I was unaware of any of the symptoms of prostate cancer. In fact, the only symptom I knew of (and even then, without a proper understanding of it) was the need to go for a wee more often than usual. Elvin

Symptoms of prostate cancer

Prostate cancer often grows slowly. Symptoms may not develop for many years. Early prostate cancer may not cause any symptoms.

Symptoms only happen when the cancer is large enough to press on the tube you pee (pass urine) through. This is called the urethra. The prostate can also become enlarged due to a condition called benign prostatic hyperplasia (BPH), which is non-cancerous.

The symptoms of benign (non-cancerous) prostate conditions and prostate cancer are similar. They can include:

- needing to pee more often than usual, especially at night

- difficulty peeing – for example, a weak flow or having to strain to start peeing

- feeling like you have not completely emptied your bladder

- an urgent need to pee

- blood in your urine or semen

- rarely, pain when peeing or ejaculating.

If you have any of these symptoms, it is important to have them checked by your doctor.

If prostate cancer spreads, it usually goes to the bones. This may cause pain in the bones, such as in the back. We have separate information about the symptoms of advanced prostate cancer in our booklet Understanding advanced prostate cancer.

Tests and scans for prostate cancer

If you have symptoms, you usually begin by seeing your GP or practice nurse. They will examine you and ask about your general health. They may also ask you about any family history of cancer.

The first tests used to diagnose prostate cancer are a rectal examination and a PSA test.

It was my mum who said that maybe I should go and get checked. She’s a nurse. I don’t think she was thinking of the prostate, but thought it was wise to get checked. Sean

Rectal examination

During a rectal examination, the doctor gently inserts a gloved finger (using lubricating gel) into the rectum (back passage) to feel the prostate. As the rectum is close to the prostate, your doctor can feel for any abnormalities in the prostate. It may feel uncomfortable, but it is quick and should not be painful.

If there is cancer in the prostate, it can feel different. Normally the prostate feels smooth, but if there is cancer, it can feel hard, rough or bumpy. With benign prostatic hyperplasia (BPH), the prostate is usually enlarged, firm, and smooth. But the prostate can feel normal, even when there are cancer cells inside.

PSA test

The PSA test is a blood test. When it is used with other tests, it can help doctors to diagnose prostate cancer.

Prostate-specific antigen (PSA) is a protein made in the prostate. Some of this PSA leaks into the blood and can be measured in the PSA test.

Prostate cancer often causes a raised level of PSA. But the test is not always reliable, and a raised level of PSA does not mean you do have prostate cancer. This is because as you get older, the level of PSA in the blood rises slowly. Your doctor will tell you what they think the normal level of PSA should be for you.

The level of PSA in the blood can also be raised for a short time by:

- urine infections (infections in your pee) or an infection of the prostate (prostatitis)

- recent ejaculation (within the last 48 hours)

- having a tube to drain pee (urinary catheter)

- recent prostate biopsies

- prostate or bladder surgery

- receiving anal sex or prostate stimulation during sex – it is best to avoid this for 1 week before a PSA test.

Tell your GP or nurse about any medicines you are taking before you have a PSA test. Some medicines can change the result of your PSA test.

Your GP will talk to you about seeing a specialist if:

- your PSA level is raised

- your prostate feels abnormal.

You will usually be seen within 2 weeks of your GP making a referral. We have more information about PSA at macmillan.org.uk/cancer-information-and-support/diagnostic-tests/psa-test

At the hospital

At the hospital, you will see a specialist doctor (urologist) or a urology specialist nurse. The doctor may want to do another PSA test or rectal examination.

They will ask about your symptoms and any other medical conditions you have. They will ask questions to find out if you have any risk factors for prostate cancer. After this, they will talk to you about having further tests.

Multi-parametric MRI scan

MRI (magnetic resonance imaging) scans use magnetism to build up a detailed picture of certain areas of the body.

A multi-parametric MRI scan is a specialised type of MRI scan. It gives a more detailed picture of the prostate and surrounding area than a standard MRI scan. Your doctor might recommend you have this scan if they think you may have early prostate cancer.

The results give doctors more information about whether there are suspicious areas that may be cancer. They give the images of your prostate a score from 1 to 5. Doctors call this your Likert score.

If your score is 3 or more, they will usually offer you a biopsy. The multi-parametric MRI scan helps doctors to do the biopsy on the suspicious area of the prostate.

If your score is under 3 you will not usually need a biopsy. Your doctor may talk to you about continuing to monitor your PSA levels. Some slow-growing cancers may not show up on a multi-parametric MRI scan.

Having the scan

The scanner is a powerful magnet. You are asked to complete and sign a checklist to make sure it is safe for you. The checklist asks about any metal implants you may have, such as a pacemaker, surgical clips or bone pins, etc. Tell your doctor or radiographer if you have ever worked with metal or in the metal industry. Very tiny fragments of metal can sometimes lodge in the body. If you have any metal in your body, you will not usually be able to have an MRI scan.

Before the scan you may have an injection of dye (called a contrast medium) into a vein in your arm. It helps the images from the scan to show up more clearly.

During the test, you lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It is painless but can be slightly uncomfortable, and some people feel a bit claustrophobic. It is also noisy, but you will be given earplugs or headphones. You can hear, and speak to, the person operating the scanner.

Prostate biopsy

If your test results show that you may have cancer, your doctor may advise you to have a biopsy. This involves a doctor removing samples of prostate tissue with a fine needle. A pathologist (a doctor who is an expert in studying cells) looks at the samples under the microscope to check for cancer.

Before the biopsy, your doctor will talk with you about the benefits and disadvantages and explain possible risks, such as infection. You will usually be given information to take away and read.

The biopsy might take samples from a specific part of the prostate (targeted biopsy) or from different areas of the prostate (template biopsy).

Your doctor or nurse will explain the type of biopsy you will have and go over the possible side effects and risks.

To reduce the risk of an infection, your doctor or nurse may give you antibiotics before the biopsy and when you go home.

Trans-rectal ultrasound scan (TRUS) biopsy

You will usually be offered a type of biopsy called a trans-rectal ultrasound scan (TRUS) biopsy. Before the biopsy, the doctor gives you a local anaesthetic into the area of your back passage (rectal) to numb it. This reduces any pain or discomfort.

You lie on your side with your knees pulled up to your chest. They gently pass a small ultrasound probe into the rectum using lubricating gel. The ultrasound shows an image of the prostate. This helps the doctor guide a needle along the probe and into the prostate to take the biopsies. The doctor usually takes 10 to 18 small samples of tissue.

For 24 hours after the test it is important to drink plenty of fluids. You may have blood in your semen for up to a few weeks after the biopsy. You may also have a small amount of blood in your urine (pee) or stools (poo). If these symptoms do not go away, speak to your doctor.

If you receive anal sex, you should avoid this for a few weeks until the biopsy area has healed. Talk to your doctor or specialist nurse if you need more advice.

TRUS biopsy

Trans-perineal (TP) biopsy

Instead of a TRUS biopsy, your doctor may talk to you about having a trans-perineal (TP) biopsy. They take samples of the prostate through the area between the scrotum and the back passage (called the perineum).

A TP biopsy can be done under a general anaesthetic. It can also be done using a local anaesthetic to numb the area first. You may need an antibiotic before the biopsy to help prevent infection.

To have a TP biopsy, you lie on your back and the nurses place your legs in special supports (stirrups) to help the doctor reach the prostate. The doctor passes a small ultrasound probe into the rectum using lubricating gel. This shows an image of the prostate on a screen. The images from your MRI scan may also be used.

The doctor passes a needle through the skin of the perineum. It can take many small tissue samples from different areas of the prostate using a grid (template biopsy). The doctor may take samples from a specific area of the prostate (targeted) or from the whole prostate.

After the biopsy, they place a dressing over your perineum. If you had a general anaesthetic, you may stay in hospital overnight.

What to expect after your biopsy

When you go home, it is important to follow the advice your doctor or nurse gave you.

You may have a small amount of blood in your pee for up to 2 weeks. After a TRUS you may also have blood in your poo. There may also be blood in your semen.

Drink plenty of fluids like water to help reduce the risk of a urine infection. See your GP if have pain peeing or your pee is cloudy or smelly.

Contact a doctor straight away if you:

- have a lot of bleeding

- feel shivery with a temperature over 37.5°C (99.5°F)

- have problems peeing even though you are drinking lots.

Waiting for test results

Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results of your tests to be ready. You may find it helpful to talk with your partner, your family or a close friend. Your specialist nurse or a support organisation can also provide support. You may find it helpful to talk to one of our cancer support specialists on 0808 808 00 00 (7 days a week, 8am to 8pm).

Your test results

When your results are ready, you will have an appointment with your specialist. It may be helpful to take someone with you to this appointment. This can help you to remember what was said. You might also like to write down any questions you have.

If you are diagnosed with prostate cancer, you may find it hard to take in. It is common to have a range of different emotions. We have more information in our booklet How are you feeling? The emotional effects of cancer.

Sometimes the doctor may advise having further tests to help plan treatment. Not everyone will need more tests.

Your doctor will explain the different treatment options and their side effects. They may give you a choice of treatments. This is because different treatments are thought to work equally well. Your preferences are also important. You may decide on a treatment based on what it involves and its side effects.

Staging tests

Whether you have any further tests will depend on the risk of the cancer growing quickly. Doctors work out your risk by looking at different factors:

- the PSA level

- the grade of the cancer – this is how quickly it might grow, and the information comes from the result of your biopsy.

The following tests may be also used to help diagnose or stage prostate cancer. You may not need to have all of them. Knowing the stage and grade of the cancer helps you and your doctors decide on the best treatment plan.

Your doctor can explain the benefits and disadvantages of each test before you agree to have any of them. They will also tell you how and when you will get the results.

MRI (magnetic resonance imaging) scan

This can show if the cancer has spread outside the prostate to areas nearby.

The procedure is the same as for a multi-parametric MRI scan.

CT scan

A CT scan makes a three-dimensional (3D) picture of the inside of the body using x-rays taken by the CT scanner. You may have a CT scan if you are unable to have an MRI due to the magnet.

It uses a small amount of radiation. This is very unlikely to harm you. It will not harm anyone you come into contact with.

You will get an appointment letter telling you if you need to do anything before the scan. You may be asked not to eat or drink for a few hours before the scan. If this is a problem for you, call the number on your appointment letter.

You have the scan at the hospital. The person who works the scanner is called a radiographer. They help you prepare for the scan. You may have a drink or injection of a dye. This is called a contrast. It helps show certain areas of the body more clearly. The contrast may make you feel hot all over for a few minutes. It is important to let your doctor know if you are allergic to iodine or have asthma. This is because you could have a more serious reaction.

The scan takes 10 to 30 minutes, but you may be in the department for longer. You will lie very still on a narrow bed. The bed moves slowly back and forward through the donut-shaped scanner.

Bone scan

The bones are the most common place for prostate cancer to spread to beyond the lymph nodes. A bone scan can show abnormal areas of bone.

This scan uses a low dose of radiation to show abnormal areas of bone. Abnormal bone absorbs more radioactivity than normal bone, so it shows up on the scan pictures.

Abnormal areas of bone seen on the scan are sometimes called hot spots. Hot spots are not always cancer. They may be changes to the bone caused by normal healing or by other health conditions, such as arthritis.

You have the scan in the x-ray department at the hospital. If you are pregnant or breastfeeding, you should phone the department before the scan for advice.

The person who works the scanner is called a radiographer. About 3 hours before the scan, they inject a radioactive substance into a vein, usually in the arm. This substance is called a tracer. Rarely, some people are allergic to it. Tell the radiographer straight away if you feel breathless, sweaty, weak or unwell.

The scan takes about 30 to 60 minutes. You lie on a narrow bed. The bed moves slowly back and forward through the scanner. You can usually go home after the scan. The amount of radioactive tracer used is small. But you will be advised not to have close contact with pregnant women, babies and young children for up to 24 hours after the scan.

Staging and grading

Staging

The results of tests also help doctors decide on the stage of a cancer. The stage of a cancer describes its size and how far it has spread.

If you are diagnosed with prostate cancer, knowing the stage will help you and your doctor decide on the best treatment for you.

There are a few different systems used for staging prostate cancer. A simplified number staging system is described here:

- Stage 1 – the tumour is contained in the prostate.

- Stage 2 – the tumour is bigger but still contained to the prostate.

- Stage 3 – the tumour has started to break through the outer capsule of the prostate and may be in the nearby tubes that produce semen (seminal vesicles).

- Stage 4 – the tumour has spread outside the prostate. It may have spread to areas such as the bladder or back passage (rectum). Or it may have spread further, for example to the bones.

Using the numbered staging system described above:

- stage 1 and stage 2 cancer are called early (localised) prostate cancer

- stage 3 and stage 4 cancer that has not spread to other parts of the body are called locally advanced prostate cancer

- stage 4 cancer which has spread to other parts of the body, usually the bones, is called advanced (metastatic) prostate cancer.

Grading

A doctor decides the grade of the cancer by how the cancer cells look under the microscope. The grade gives an idea of how quickly the cancer might grow or spread.

Gleason score

Gleason is a commonly used grading system for prostate cancer. The Gleason score examines the pattern of cancer cells in the prostate tissue, and how they look and act, compared with normal cells.

There are 5 different patterns, graded from 1 to 5. Grade 1 and 2 look like normal prostate tissue. But grade 5 is very different to normal tissue.

There may be more than 1 grade. The doctor examines all the biopsy samples taken and decides on:

- the most common grade

- the highest grade.

They add these together to give your Gleason score. A Gleason score of 7 could be:

- 3 + 4 – the most common grade is 3 and the highest grade is 4

or

- 4 + 3 – the most common and highest grade are both 4, but there is also some grade 3 present.

What your Gleason score means

If your Gleason score is between 6 and 10, the cancer is:

- Gleason score 6 – slow growing

- Gleason score 7 – intermediate grade (between slow and fast-growing)

- Gleason score 8 to 10 – high grade (more likely to grow quickly).

Talking to your healthcare team

Most conversations with your healthcare team will probably go well. But you may sometimes feel you are not getting the information you need.

Here are some tips for talking to health and social care staff:

Ask your doctors and nurses to use simple language and to explain medical terms. If they use words you do not understand, ask them to explain them to you. Sometimes they may forget that you are not as familiar with medical terms as they are.

Use your own words. Although your doctors or nurses may use medical terms, you do not have to. It is okay to use your own words to describe the problem. Using medical terms that you only partly understand might cause problems, as the healthcare professionals may think you know more than you do.

If you are embarrassed, say so. We all find certain medical symptoms and problems embarrassing. They are often not the kind of thing we want to talk about with someone else. You may find the idea of a digital rectal examination embarrassing. If you can, tell your doctor if you feel uncomfortable about any procedures or examinations so they know how you are feeling.

Try to think of the questions you want to ask before you meet with your doctor or nurse. It may be helpful to write them down to help you remember.

During appointments, write down the important points so you can take them away with you. Some people are happy for you to record the discussion so that you can listen to it later. You can also ask your medical team for a copy of any letters summarising the details of your discussion with them.

Remember, you will have other chances to ask questions. You may also be given contact details for a specialist nurse you can speak to if you have a question, or if you do not understand something.

Asking questions

Diagnosis and treatment can be a worrying and confusing time.

Talking to your health and social care team can help. Many people feel better and more in control when they know what is happening to them and why.

People often feel that hospital staff are too busy to answer their questions. But it is important that you understand what is happening and how the cancer and its treatment are likely to affect you. The staff should be willing to make time for your questions.

Here are some questions you may want to ask your healthcare team:

- What tests do I need?

- When will I get the test results?

- Who should I call if I need help between appointments?

- What will happen if I decide not to have treatment?

About our information

We provide expert, up-to-date information about cancer. And all our information is free for everyone.

Order what you need

You may want to order more booklets or leaflets, or download more eBooks like this one. Visit be.macmillan.org.uk or call us on 0808 808 00 00.

We have booklets on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends.

Online information

All of our information is also available online at macmillan.org.uk/information-and-support There you’ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals.

Other formats

We also provide information in different languages and formats, including:

- audiobooks

- Braille

- British Sign Language

- Easy Read booklets

- large print

- translations.

Find out more at macmillan.org.uk/otherformats If you’d like us to produce information in a different format for you, email us at cancerinformationteam@macmillan.org.uk or call us on 0808 808 00 00.

Help us improve our information

We know that the people who use our information are the real experts. That’s why we always involve them in our work. If you’ve been affected by cancer, you can help us improve our information.

We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets.

If you’d like to hear more about becoming a reviewer, email reviewing@macmillan.org.uk You can get involved from home whenever you like, and we don’t ask for any special skills – just an interest in our cancer information.

Other ways we can help you

At Macmillan, we know how a cancer diagnosis can affect everything, and we are here to support you.

Talk to us

If you or someone you know is affected by cancer, talking about how you feel and sharing your concerns can really help.

Macmillan Support Line

Our free, confidential phone line is open 7 days a week, 8am–8pm. Our cancer support specialists can:

- help with any medical questions you have about your cancer or treatment

- help you access benefits and give you financial advice

- be there to listen if you need someone to talk to

- tell you about services that can help you in your area.

Call us on 0808 808 00 00 or email us via our website, macmillan.org.uk/talktous

Information centres

Our information and support centres are based in hospitals, libraries and mobile centres. There, you can speak with someone face to face.

Visit one to get the information you need, or if you’d like a private chat, most centres have a room where you can speak with someone alone and in confidence.

Find your nearest centre at macmillan.org.uk/informationcentres or call us on 0808 808 00 00.

Talk to others

No one knows more about the impact cancer can have on your life than those who have been through it themselves. That’s why we help to bring people together in their communities and online.

Support groups

Whether you are someone living with cancer or a carer, we can help you find support in your local area, so you can speak face to face with people who understand. Find out about support groups in your area by calling us or by visiting macmillan.org.uk/selfhelpandsupport

Online community

Thousands of people use our online community to make friends, blog about their experiences and join groups to meet other people going through the same things. You can access it any time of day or night. Share your experiences, ask questions, or just read through people’s posts at community.macmillan.org.uk

The Macmillan healthcare team

Our nurses, doctors and other health and social care professionals give expert care and support to individuals and their families. Call us or ask your GP, consultant, district nurse or hospital ward sister if there are any Macmillan professionals near you.

Help with money worries

Having cancer can bring extra costs such as hospital parking, travel fares and higher heating bills. If you’ve been affected in this way, we can help.

Financial guidance

Our financial guidance team can give you advice on mortgages, pensions, insurance, borrowing and savings.

Help accessing benefits

Our benefits advisers can offer advice and information on benefits, tax credits, grants and loans. They can help you work out what financial help you could be entitled to. They can also help you complete your forms and apply for benefits.

Macmillan Grants

Macmillan offers one-off payments to people with cancer. A grant can be for anything from heating bills or extra clothing to a much-needed break.

Call us on 0808 808 00 00 to speak to a financial guide or benefits adviser, or to find out more about Macmillan Grants. We can also tell you about benefits advisers in your area.

Visit macmillan.org.uk/financialsupport to find out more about how we can help you with your finances.

Help with work and cancer

Whether you’re an employee, a carer, an employer or are self-employed, we can provide support and information to help you manage cancer at work. Visit macmillan.org.uk/work

Other useful organisations

There are lots of other organisations that can give you information or support. Details correct at time of printing.

Prostate cancer support organisations

Bladder and Bowel Community

Email help@bladderandbowel.org

www.bladderandbowel.org

Provides information and advice on a range of symptoms and conditions related to the bladder and bowel, including incontinence, constipation and diverticular disease.

Orchid

Helpline 0808 802 0010

Email helpline@orchid-cancer.org.uk

www.orchid-cancer.org.uk

Funds research into men’s cancers and their diagnosis, prevention and treatment. Offers free information leaflets and fact sheets, and runs an enquiry service supported by Orchid Male Cancer Information Nurses.

Prostate Cancer UK

Helpline 0800 074 8383

www.prostatecanceruk.org

Provides information and support to men with prostate cancer and their families. Has offices in London, the Midlands, Scotland, Wales and Northern Ireland.

Prostate Scotland

Tel 0131 603 8660

Email info@prostatescotland.org.uk

www.prostatescotland.org.uk

A Scottish charity set up to provide information, advice and support on prostate health and diseases of the prostate. You can watch videos online and download free leaflets and booklets.

Tackle Prostate Cancer

Tel 0800 035 5302

Email helpline@tackleprostate.org

www.tackleprostate.org

An organisation of UK patient-led prostate cancer support groups.

Support with sexual issues

Sexual Advice Association

www.sexualadviceassociation.co.uk

Aims to improve the sexual health and well-being of men and women, and to raise awareness of how sexual conditions affect the general population.

Prostate Cancer UK sexual support service

Specialist nurses 0800 074 8383

www.prostatecanceruk.org/get-support/sexual-support

A service for you or your partner to talk to a specialist nurse with an interest in helping with sexual problems after treatment for prostate cancer.

General cancer support organisations

Cancer Black Care

Tel 020 8961 4151

www.cancerblackcare.org.uk

Offers UK-wide information and support for people from Black and ethnic minority communities who have cancer. Also supports their friends, carers and families.

Cancer Focus Northern Ireland

Helpline 0800 783 3339 (Mon to Fri, 9am to 1pm)

Email nurseline@cancerfocusni.org

www.cancerfocusni.org

Offers a variety of services to people affected by cancer in Northern Ireland.

Cancer Research UK

Helpline 0808 800 4040 (Mon to Fri, 9am to 5pm)

www.cancerresearchuk.org

A UK-wide organisation that has patient information on all types of cancer. Also has a clinical trials database.

Cancer Support Scotland

Tel 0800 652 4531 (Mon to Fri, 9am to 5pm)

Email info@cancersupportscotland.org

www.cancersupportscotland.org

Runs cancer support groups throughout Scotland. Also offers free complementary therapies and counselling to anyone affected by cancer.

Macmillan Cancer Voices

www.macmillan.org.uk/cancervoices

A UK-wide network that enables people who have or have had cancer, and those close to them such as family and carers, to speak out about their experience of cancer.

Maggie’s

Tel 0300 123 1801

Email enquiries@maggies.org

www.maggies.org

Has a network of centres in many locations throughout the UK. Provides free information about cancer and financial benefits. Also offers emotional and social support to people with cancer, their family, and friends.

Penny Brohn UK

Helpline 0303 3000 118 (Mon to Fri, 10am to 2pm)

Email helpline@pennybrohn.org.uk

www.pennybrohn.org.uk

Offers physical, emotional and spiritual support across the UK, using complementary therapies and self-help techniques.

Riprap

www.riprap.org.uk

Developed especially for teenagers in the UK who have a parent with cancer. Has an online forum where teenagers going through similar experiences can talk to each other for support.

Tenovus

Helpline 0808 808 1010

(Mon to Fri, 9am to 5pm, and Sat to Sun, 10am to 1pm)

www.tenovuscancercare.org.uk

Aims to help everyone in the UK get equal access to cancer treatment and support. Funds research and provides support such as mobile cancer support units, a free helpline, benefits advice and an online ‘Ask the nurse’ service.

General health information

Health and Social Care in Northern Ireland

online.hscni.net

Provides information about health and social care services in Northern Ireland.

NHS.UK

www.nhs.uk

The UK’s biggest health information website. Has service information for England.

NHS Direct Wales

www.nhsdirect.wales.nhs.uk

NHS health information site for Wales.

NHS Inform

Helpline 0800 22 44 88 (7 days a week 8am to 10pm)

www.nhsinform.scot

NHS health information site for Scotland.

Patient UK

patient.info

Provides people in the UK with information about health and disease. Includes evidence-based information leaflets on a wide variety of medical and health topics. Also reviews and links to many health- and illness-related websites.

Counselling

British Association for Counselling and Psychotherapy (BACP)

Tel 0145 588 3300 (Mon to Fri, 10am to 4pm)

Email bacp@bacp.co.uk

www.bacp.co.uk

Promotes awareness of counselling and signposts people to appropriate services across the UK. You can also search for a qualified counsellor on their ‘How to find a therapist’ page.

UK Council for Psychotherapy (UKCP)

Tel 020 7014 9955

Email info@ukcp.org.uk

www.psychotherapy.org.uk

Holds the national register of psychotherapists and psychotherapeutic counsellors, listing practitioners who meet exacting standards and training requirements.

Emotional and mental health support

Mind

Helpline 0300 123 3393 (Mon to Fri, 9am to 6pm)

Email info@mind.org.uk

www.mind.org.uk

Provides information, advice and support to anyone with a mental health problem through its helpline and website.

Samaritans

Helpline 116 123

Email jo@samaritans.org

www.samaritans.org

Provides confidential and non-judgemental emotional support, 24 hours a day, 365 days a year, for people experiencing feelings of distress or despair.

Support for older people

Age UK

Helpline 0800 678 1602 (Daily, 8am to 7pm)

www.ageuk.org.uk

Provides information and advice for older people across the UK via the website and advice line. Also publishes impartial and informative fact sheets and advice guides.

LGBT-specific support

LGBT Foundation

Tel 0345 330 3030 (Mon to Fri, 9am to 9pm)

Email helpline@lgbt.foundation

www.lgbt.foundation

Provides a range of services to the LGBT community, including a helpline, email advice and counselling. The website has information on various topics including sexual health, relationships, mental health, community groups and events.

Live Through This

www.livethroughthis.co.uk

A safe space for anybody who identifies as part of the queer spectrum and has had an experience with any kind of cancer at any stage. Also produces resources about LGBT cancer experiences. LTT runs a peer support group with Maggie’s Barts.

Support for carers

Carers Trust

Tel 0300 772 9600 (Mon to Fri, 9am to 5pm)

Email info@carers.org

www.carers.org

Provides support, information, advice and services for people caring at home for a family member or friend. You can find details for UK offices and search for local support on the website.

Carers UK

Helpline (England, Scotland, Wales) 0808 808 7777 (Mon to Fri, 9am to 6pm)

Helpline (Northern Ireland) 028 9043 9843

www.carersuk.org

Offers information and support to carers across the UK. Has an online forum and can put people in contact with local support groups for carers.

Disclaimer, thanks and sources

Disclaimer

We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photos are of models.

Thanks

This eBook has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by Dr Jim Barber, Consultant Clinical Oncologist, and Dr Ursula McGovern, Consultant Medical Oncologist.

With thanks to: Jane Booker, Macmillan Urology Clinical Nurse Specialist; Mr Christian Brown, Consultant Urological Surgeon; Sharon Clovis, Prostate Clinical Nurse Specialist; Mr Daniel Good, Consultant Urological Surgeon; Dr Mohammed Kagzi, Consultant Clinical Oncologist; Dr Duncan McLaren, Consultant Clinical Oncologist; David Stafford, Macmillan Lead Nurse in Urology Cancer Services; and Professor Jonathan Waxman, Professor of Oncology.

Thanks also to the people affected by cancer who reviewed this edition, and those who shared their stories.

We welcome feedback on our information. If you have any, please contact cancerinformationteam@macmillan.org.uk

Sources

Below is a sample of the sources used in our test for prostate cancer information. If you would like more information about the sources we use, please contact us at cancerinformationteam@macmillan.org.uk

C. Parker, E. Castro, K. Fizazi, et al. Prostate cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology, 2020, Volume 31, Issue 9, p1119-1134. Available from https://www.esmo.org/guidelines/genitourinary-cancers/prostate-cancer

National Institute for Health and Care Excellence (2019) Prostate cancer: diagnosis and management (NICE guideline NG131) Available at https://www.nice.org.uk/guidance/ng131

N. Mottet, P. Cornford et al. European Association of Urology (EAU) Guidelines on Prostate Cancer. Edn. Presented at the EAU Annual Congress Amsterdam 2020. ISBN 978-94-92671-07-3. Available at EAU-EANM-ESTRO-ESUR-SIOG-Guidelines-on-Prostate-Cancer-2020v4.pdf (uroweb.org)

Can you do something to help?

We hope this eBook has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way.

We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team.

5 ways you can help someone with cancer

Share your cancer experience

Support people living with cancer by telling your story, online, in the media or face to face.

Campaign for change

We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care.

Help someone in your community

A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand?

Raise money

Whatever you like doing you can raise money to help. Take part in one of our events or create your own.

Give money

Big or small, every penny helps.

Call us to find out more 0300 1000 200

macmillan.org.uk/getinvolved