Series No 64 - Radiotherapy for penile cancer : University College London Hospitals NHS Foundation Trust

This information is for patients who are having radiotherapy for penile cancer, either before or after surgery. It explains what the treatment involves and describes side effects you may experience during and after treatment. It also includes information on how best to cope with the side effects.

If you have any further questions about the treatment, please speak to the team looking after you.

We want to involve you in all the decisions about your care and treatment. If you decide to go ahead with treatment, by law, we must ask for your consent and will ask you to sign a consent form. This confirms that you agree to having the procedure and understand what it involves.

Staff will explain all the risks, benefits and possible alternatives before they ask you to sign a consent form. If you are unsure about any aspect of your proposed treatment, please do not hesitate to speak to speak to the team looking after you.

During your time with us we aim to provide the highest standards of care and support you in your decisions regarding your treatment. We will respect your dignity, individuality and personal preferences.

Your care will be managed and given by therapeutic radiographers, doctors and nurses. You will meet both male and female healthcare professionals during your treatment. If you have any concerns about this, please talk to the radiographers about it. We try to be sensitive to your needs, so please do not hesitate to discuss things with the team caring for you.

Surgery is usually the main treatment for penile cancer. You might have radiotherapy for the following reasons:

Instead of surgery if you can’t or don’t want to have an operation.
Instead of surgery to lymph nodes in the pelvis or groin.
After surgery if there is a risk that cancer cells are left in the groin or pelvis.
To treat the lymph nodes in the pelvis if there is a high risk of the cancer coming back.
To relieve symptoms if penile cancer has spread (advanced penile cancer). This is called palliative radiotherapy. Radiotherapy can shrink the cancer for a period and relieve symptoms. You would usually have a short course of daily treatments to the affected area over a few days. This does not get rid of the cancer permanently.

We will need to examine you and assess your physical health to make sure radiotherapy is right for you at this time. We will ask you about your bowel movements (going for poo) and bladder function (going for pee). If you have not had surgery to the penile area, you may need to be circumcised before you have radiotherapy. This is removing your foreskin and is done under anesthetic. Removing the foreskin can help to prevent swelling and inflammation of the penis caused by radiotherapy.

Radiotherapy is a specialised treatment for cancer using high-energy radiation beams. These can be x-rays (also called photons), electrons or protons.

X-rays and electrons are delivered from a machine called a linear accelerator. Protons are delivered from a machine called a cyclotron.

Radiotherapy works by damaging cancer cells in the part of the body being treated. The radiation stops the cancer cells from dividing and growing. Radiotherapy can also damage nearby healthy cells. But the healthy cells are more likely to recover from the effects of the radiation than the cancer cells. Your doctors will take great care to reduce the radiation dose to your healthy cells.

Radiotherapy does not hurt, and it will not make you radioactive. You will be completely safe to be around family, friends and pregnant women. You will feel nothing from the treatment and the machine will not touch you. The most important thing is for you to lie very still for treatment.

You will likely receive your treatment as an outpatient. Your doctor will advise you how long you will need your treatment for. You will get your treatment schedule on your first treatment visit to the radiotherapy or proton beam department.

Sometimes, chemotherapy and radiotherapy are given together. This is known as chemoradiation or chemoradiotherapy. Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. When given with radiotherapy, it helps to make the cancer cells more sensitive to the radiotherapy treatment. Your doctor will advise you if this is suitable for you.

Before starting radiotherapy planning and treatment, you will need to follow special instructions given to you on preparing your bladder. You should have a comfortably full bladder and ideally, not be constipated. It might be best to take laxatives to make sure this gets better before your radiotherapy starts. Following these instructions will help to:

Improve the accuracy of your treatment.
Reduce the risk of any long-term bowel side effects.

If you have any difficulty following the instructions, please discuss this with a member of the team. We are here for you.

Before beginning radiotherapy, your treatment must be carefully planned. To plan your radiotherapy treatment, we will carry out a radiotherapy planning CT scan of your pelvis to locate the exact site to treat.

The planning CT scan will be carried out by planning radiographers. You can eat and drink normally before your planning CT scan. When you come for this appointment, the planning radiographers will ask you to empty your bladder.
We would like you to try and empty your bowels before starting treatment, but we do not use regular enemas.
Drink five cups of water, after you have emptied your bowels. This is available in the waiting area. Do not do this until instructed by a radiographer.
Wait for 30 -45 minutes, to allow for your bladder to fill (comfortably), before you have your radiotherapy planning scan. If you do not feel your bladder is full after 30-40 minutes, please tell the radiographers.

You may need a cannula inserted into your arm to introduce some contrast agent/dye. Contrast agent shows up on the CT scan and makes the images taken during the scan clearer. If you need this, the radiographers will explain what is happening before and during the process. Sometimes you may need to have a piece of soft wax placed over the treatment area. This will be decided at your CT appointment. Your doctor or radiographer will explain this to you and why this is necessary.

You will not feel anything during the scan. You will need to lie still on the scanning couch and breathe normally. The scan will take about 20 minutes. After the scan is completed, the radiographers will mark three or four specific points on your pelvis. They do this by placing dots of permanent ink on your skin and gently scratching the surface of the skin with a fine needle. These dots will be used to place you in the correct position each time you have your treatment.

Before you leave the imaging department, we will give you an appointment list with the date and time for your next visit, which will be your first radiotherapy treatment.

Please allow around two hours for your planning CT appointment.

You can eat and drink normally on the day of your radiotherapy appointment. Please arrive at least one hour before your allotted radiotherapy appointment time. At each appointment you will need to.

Empty your bladder.
After emptying your bowels, the radiographers will tell you when to start drinking the prescribed amount of water that you drank at your planning CT scan. This is available in the waiting area.
Wait the prescribed amount of time advised at your planning CT scan, to allow for your bladder to fill (comfortably), before you have your radiotherapy treatment.

For each radiotherapy treatment appointment, you should allow up to two hours. You should aim to arrive at least an hour before your given treatment appointment time, to allow for the above process. It is important that you understand and follow the instructions for treatment preparation given to you.

During each treatment session, you will be lying on your back on the scanning couch. The radiographers will move you to the correct treatment position by aligning the marks on your skin using laser lights. They will also make sure that you are as comfortable as possible. They will then move the treatment machine and treatment couch into position using your personal treatment plan.

The radiographers will leave the room after the final verbal checks. They will be in a room next door and will watch you at all times on a closed-circuit television.

Each treatment session lasts about 20 minutes. You will not feel anything and you can breathe normally. All we ask is that you keep still.

Some side effects will gradually appear during your course of radiotherapy, and some will appear months or years later. The risk and severity of side effects will depend on the dose of radiotherapy given and the exact area treated. Your doctor will tell you about the side effects specific to you before you sign a consent form. You will have a chance to ask questions and talk about any worries you may have.

We have outlined some common side effects you may experience.

Skin changes

The skin in the area being treated will gradually become pink/red or darker, depending on your skin colour. It may also get dry, sore or itchy, or it can peel. The skin on your penis can also become very sore and red, and it can peel. The radiotherapy review team will see you regularly and provide specialist skincare advice.

You may notice the skin between your legs and around your back passage becoming red, sore and moist towards the end of treatment. Some people may develop an irritation or itch around their back passage. This can be painful, but we will give you painkillers to help with that.

During treatment, we recommend that you wash your pelvic area using warm water and the soap products you would normally use. We don’t advise that you sit and soak in a hot bath. Gently pat your skin dry with a soft towel and gently press the towel around your pelvic area. If the skin between your legs becomes sore, wear loose cotton boxer shorts rather than briefs.

To minimise the risk of skin irritation, use a moisturiser of your choice. Stop using the moisturiser if it irritates your skin, or if the skin becomes too sore. Speak to the radiographers if you need advice on this.

Avoid exposing the skin in the treatment area to strong sunlight and avoid extreme temperature changes during treatment.

Bladder

You may find that you have to pee more often both during the day and at night. There may be slowing of the stream, and you may have a burning sensation when you pee. This is called radiation cystitis and is caused by the radiotherapy inflaming a small area of your bladder. If you notice a burning sensation, please let your healthcare team know. They will ask you for a urine sample to check if it is radiation cystitis and not an infection. Drinking plenty of water and avoiding caffeine and alcohol can help.

Bowel

It is likely that you will develop diarrhoea after three to four weeks of treatment. You may also have colicky or wind pains. These are common reactions to the radiotherapy. You should continue to eat a normal diet and try to drink between one and two litres of fluids a day. Your healthcare team can also prescribe you medicines to help with diarrhoea. If your diarrhoea gets worse, let your team know as soon as possible. They can advise you on your diet and prescribe another medicine.

Very occasionally, you may notice a discharge of blood and mucus (slime) in your poo, or your back passage may feel sore. This is also a reaction to the radiotherapy. If you’re worried, contact your healthcare team for advice.

Swelling and pain

During radiotherapy your skin may become swollen which can cause pain and discomfort. Tell your healthcare team if you are in pain so that they can give you painkillers. The swelling and pain will start to settle about seven to 10 days after radiotherapy is complete.

Hair loss

You will notice a loss of hair in the treated area only. This is usually temporary. Hair should start to grow back eight to 12 weeks after radiotherapy has finished.

Sex

Your skin may become sore and irritated. You may wish to avoid having sex until any treatment side effects have settled

Feeling sick

Sickness is unusual during this treatment but some patients may occasionally feel sick. If this happens, please tell your team. They can prescribe you anti-sickness medication.

Tiredness

Tiredness is a very common side effect of radiotherapy treatment. You may feel more tired than usual and have less energy, both during and after treatment. The tiredness may even continue for several weeks after your radiotherapy has finished.

We recommend that you listen to your body. Do as much as you feel you can and rest when you need to. Gentle exercise such as walking can help with tiredness so try short daily walks if you can.

Please speak to your team if you are finding things difficult as they will be able to offer some practical advice.

The radiographers will talk to you about any side effects you may experience at your first treatment appointment. They will see you every day during your treatment and ask how you are doing.

You will also have weekly appointments during treatment with your doctor or the review team.

Late side effects of radiotherapy can develop months or years after you have finished treatment. They are hard to predict accurately and, unfortunately, they are usually permanent when they occur. Your doctor will talk to you about these late side effects before you sign your treatment consent form.

Possible late side effects may include.

Skin changes

The skin of your penis may become darker or lighter following radiotherapy treatment. The is due to radiotherapy affecting the blood flow to the treated area. This can cause problems in keeping the tissue healthy. The tissue may become starved of oxygen and nutrients and may cause thickening of the skin. If you notice any changes in the colour of your skin where you had treatment, tell your doctor straight away.

Swelling

Some men get swelling in one or both legs after radiotherapy to the lymph nodes in the groin and pelvis. This swelling is called lymphoedema. If you are worried about your swelling, please speak to your doctor or clinical nurse specialist (CNS).

Urine flow

After radiotherapy there is a small risk that the tube that takes urine from the bladder (urethra) may become narrowed. This can make passing urine (peeing) difficult and there may be ‘spraying’. If you find peeing difficult and you feel unable to empty your bladder fully, please contact your healthcare team without delay. You might need to have your urethra stretched (dilated). Or you may have surgery to widen the urethra. This will all be explained to you if the procedure is required.

Sexual function

Penile radiotherapy can damage nerves in the pelvic and penile area and blood vessels that supply blood to the penis. This can cause problems in getting or keeping an erection. This is called erectile dysfunction. Thickening of the skin on the penis can also make getting an erection more difficult.

You may be worried about how this can affect your sex life and you may find it difficult to talk about. But please speak to your doctor or CNS if this happens. They can refer you to an appropriate specialist to discuss the treatment options.

Bowel changes

Around two in 10 people notice permanent changes in their bowel habits. Their poo may be more loose or they may need to go to the toilet more frequently than they did before treatment. Some people need long-term medication to regulate their bowel. It is also quite common to experience a straining feeling (proctitis).

Very rarely scar tissue may develop which can affect the bowel and worsen your diarrhoea. Very occasionally however, after surgery and radiotherapy, the tissue surrounding the bowel can stick together causing a blockage or a fistula, and this can sometimes require further surgery to correct.

Fertility

Penile radiotherapy is likely to affect your fertility and you may not be able to have children after treatment. We will talk to you about sperm storage before starting radiotherapy.

Fistula

An abnormal opening (fistula) might form between the urethra and skin, which could result in urine leaking out through the opening.

Second cancer

Very rarely, people who have received treatment for one cancer may develop another type of cancer in the treated area some years later. Your healthcare team will talk to you about this if it is relevant to you.

We know that having treatment is physically demanding and can affect your mental health. There’s support available from your specialist nurse, the Macmillan information and support radiographer, the treatment radiographers and the radiotherapy review team. But your team can also refer you to a psychology team for further emotional support. They can help with any worries or difficulties you may be having.

You will have a follow-up appointment with your doctor about four weeks after your radiotherapy has finished. You will also have a ‘baseline’ MRI scan six to eight weeks after your radiotherapy has ended. The results of this scan will be used to compare with any future scans you have. They will not show how effective the treatment has been.

The side effects you may have experienced will continue after your treatment has finished. The skin reactions may also get worse for about ten to fourteen days after radiotherapy. Contact the radiotherapy department or your CNS if you are worried about your side effects.

Uro-oncology clinical nurse specialists (CNS’s):

Telephone: 0203 447 7151 (Please leave a message if your call is not answered)

Uro-oncology team (general enquiries):

Email: Uclh.uro-oncology.cns@nhs.net

Macmillan Information and Support Radiographer:

Direct line: 020 3447 371

Radiotherapy Review Team

Telephone: 020 3447 3705

Email: uclh.radiotherapyreviewteam1@nhs.net

Out of hours oncology advice number (available 24 hours)

Mobile: 07947 959020

Macmillan Cancer Support