Caring for people with cancer. Understanding. testicular cancer

Transcription

1 Caring for people with cancer Understanding testicular cancer

2 The Irish Cancer Society thanks Cancerbackup the British Association for Cancer United Patients for permission to adapt the text of their booklet, Understanding Testicular Cancer. Understanding testicular cancer This booklet has been written to help you understand testicular cancer. It has been prepared and checked by cancer doctors, other relevant specialists, nurses and patients. The information in this booklet is an agreed view on this cancer, its diagnosis and management, and the key aspects of living with it. If you are a patient, your doctor or nurse may wish to go through the booklet with you and mark sections that are important for you. You can also make a note below of the contact names and information that you may need quickly. Specialist nurse/contact names Family doctor Hospital Surgery address Tel Tel Treatments Review dates If you like, you can also add: Your name Address

3 Irish Cancer Society, 43/45 Northumberland Road, Dublin 4 Tel: Fax: info@irishcancer.ie Website: The Irish Cancer Society is the national charity for cancer care, dedicated to eliminating cancer as a major health problem and to improving the lives of those living with cancer. This booklet has been produced by the Nursing Services Unit of the Irish Cancer Society to meet the need for improved communication, information and support for cancer patients and their families throughout diagnosis and treatment. We would like to thank all those patients, families and professionals whose support and advice made this publication possible. E DITOR Antoinette Walker C ONSULTANT M EDICAL A DVISERS Dr John McCaffrey, Medical Oncologist Mr David Mulvin, Consultant Urologist Dr Seamus O Cathail, Radiation Oncologist S ERIES E DITOR Joan Kelly, Nursing Services Manager First published by the Irish Cancer Society in Irish Cancer Society 2003, revised 2006 All rights reserved. No part of this publication may be reproduced or transmitted, in any form or by any means, electronic or mechanical, including photocopying, recording or any information storage and retrieval system, without permission in writing from the Irish Cancer Society. ISBN Contents 4 Introduction 5 What does that word mean? Before diagnosis 6 What is cancer? 8 The testicles 8 What causes testicular cancer? 9 What are the symptoms of testicular cancer? 11 How does the doctor make the diagnosis? Treatment and side-effects 15 After the tests, what about treatment? 18 Radiotherapy 22 Chemotherapy 30 High-dose treatment with stem cell support 33 Research what is a clinical trial 35 Will treatment affect your sex life? 36 Fertility 39 Fatigue 41 Cancer and complementary therapies Coping and emotions 45 How to cope with your feelings 50 What if you are a relative or friend? 51 Talking to children 52 What you can do 54 Who else can help? 56 Life after treatment Support resources 61 Health cover 69 Irish Cancer Society services 72 Useful organisations 77 Helpful books 78 Frequently asked questions 79 Your own questions

4 4 Understanding testicular cancer Introduction This booklet has been written to help you learn more about testicular cancer. We hope it answers some questions you may have about symptoms and diagnosis, treatment, and how to cope with any side-effects that may occur. The treatment for testicular cancer can vary a little between doctors and hospitals. As a result, you may have questions and concerns about your own treatment which this booklet does not answer. We cannot advise you about which treatment to choose. It is best to discuss details of your own treatment with your doctor. At the back of the booklet, you will also find lists of useful organisations, books and websites. Reading this booklet Read the sections of this booklet that are of interest to you only. Some of the information may not be relevant to your situation. You may find that there is a lot of information to take in and that it can be hard to concentrate, especially if you are feeling anxious or worried. Remember that you do not need to know everything about testicular cancer straight away. Read a section and when you feel relaxed and want to know more, read another section. If you do not understand something that has been written, discuss it with your doctor or nurse. You can also call the freefone National Cancer Helpline If you have found the booklet helpful, pass it on to your family and friends too. The more they know about your illness, the more they can help you when you need them most. Understanding testicular cancer 5 What does that word mean? Abdomen The part of the body that lies between the chest and the hips. Sometimes known as the belly or tummy. Adjuvant treatment Treatment given soon after surgery when a diagnosis of cancer is made. Alopecia Loss of hair. No hair where you normally have hair. Anti-emetic A tablet, injection or suppository to stop you feeling sick or vomiting. Benign Not cancer. Biopsy The removal of a small amount of tissue from your body to find out if cancer cells are present. Cells The building blocks that make up your body. They are very small and can only be seen under a microscope. Chemotherapy Treatment with drugs that cure or control cancer. Fatigue Tiredness. Nausea Feeling sick or wanting to be sick. Malignant Cancer. Metastasis The spread of cancer from one part of the body to other tissues and organs. Oncology The study of cancer. Orchidectomy Surgical removal of a testicle. Medical oncologist A doctor who specialises in treating cancer patients using chemotherapy and other medications. Radiotherapy The treatment of cancer using high energy X-rays. Radiation oncologist A doctor who specialises in treating cancer patients using radiotherapy. Staging A series of tests that measure the size and extent of cancer.

5 6 Understanding testicular cancer Understanding testicular cancer 7 What is cancer? Cancer is a word used to describe a group of diseases. Each one has its own name. For example: skin cancer, lung cancer, and breast cancer. Each has its own type of treatment and chance of being cured. The organs and tissues of the body are made up of tiny building blocks called cells. All cancers are a disease of the body s cells. In healthy tissue these cells replace or repair themselves when they get worn out or injured. Where there is cancer, the cells do not behave as normal and keep on growing even when there is no need. Normal cells Cells forming a tumour These abnormal cells can form a tumour. Tumours can be either benign or malignant. Benign tumours do not spread to other parts of the body so are not called cancer. Malignant tumours are made up of cancer cells that can spread from where they started and can go on to damage other tissues and organs. This may happen when a cell or group of cells breaks away and enters the bloodstream or lymphatic system to form a new tumour somewhere else in the body. This is called a metastasis or secondary tumour. The lymphatic system The lymphatic system is one of the body s natural defences against infection. It includes a network of tiny tubes like blood vessels, which pass through almost all the tissues in the body. These vessels To sum up Lymph nodes Lymphatic vessels Testicles The lymphatic system carry a clear watery fluid called lymph. Along this network are hundreds of small bean-shaped glands called lymph nodes. Their job is to filter the lymphatic fluid for foreign particles as it passes through. They also allow white cells called lymphocytes to protect the body against infection. Lymph nodes can be found in groups throughout the body such as in the neck, armpits and groin. Sometimes you may become aware of these glands if they become swollen or enlarged. More of these lymph nodes are found grouped together in the chest and abdomen. Other parts of the lymphatic system include the liver, spleen, thymus, tonsils and bone marrow. The treatment of testicular cancer, even when it has spread to other parts of the body, is usually very successful. It has the highest cure rate of all cancers even when it has spread to other parts of the body. Cancer is a disease of the cells of the body. Where there is cancer, cells do not behave as normal and keep on growing even when they don t need to. These abnormal cells can form a tumour. If a tumour is malignant, cells can break away and enter the bloodstream or lymphatic vessels to form a new tumour somewhere else. This is called a metastasis or secondary cancer.

6 8 Understanding testicular cancer The testicles Collecting tubules Testicle Spermatic cord Scrotum The testicles, or testes, are two small oval-shaped organs that are located below the penis in a pouch of skin called the scrotum. The testes are part of the male reproductive system. From the age of puberty they produce sperm, which can fertilise the female egg after intercourse. The testes also produce the hormone testosterone. This hormone is responsible for male characteristics such as: A deep voice Beard growth Muscle development The ability to have an erection Sex drive (libido). What causes testicular cancer? In most cases, the exact cause of testicular cancer is unknown. Although it is still quite rare, the number of men who develop testicular cancer has been steadily increasing for the past few years. The reason for this is not known, but research is going on all the time into possible causes. Testicular cancer is more common in men with an undescended testicle or who have a testicle that did not descend until some time after birth. You are also slightly more at risk if you have had testicular cancer in the past. There is a very small increased risk of Understanding testicular cancer 9 developing testicular cancer if your father or brother had the disease. Research has shown that a particular gene is the cause of cancer in some men. Testicular cancer is more common in white men than African or Asian men. It occurs more commonly in wealthier social groups too. The reasons for this are not known. It is not clear if injury to the testicle or environmental exposure to various chemicals can cause testicular cancer. Men with fertility problems are more at risk of testicular cancer but the risk is small. A vasectomy does not increase the risk of a man developing testicular cancer. Some men who had a rare complication of mumps called mumps orchitis may develop testicular cancer. But testicular cancer is not infectious and cannot be passed on to other people. What are the symptoms of testicular cancer? The most common symptom of testicular cancer is a painless swelling or lump in one of the testicles. Sometimes the scrotum may feel heavy and appear swollen. Even if you have no pain, you should have any swelling in the testes checked out by a doctor. He or she will decide what to do. In some cases, the tumour can be very small and symptoms are caused by spread of the cancer to other parts of the body. These symptoms may include backache, breast tenderness, stomach ache, shortness of breath, or a painless lump in the side of the neck. However, in most cases all of these symptoms occur for reasons other than cancer. Cancer Helpline Ê

7 10 Understanding testicular cancer Understanding testicular cancer 11 To sum up The vast majority of testicular cancers are curable and those that are found early are the most easily treated. The best way to check for testicular cancer is to examine your testes once a month. The best time to do this is after a warm bath or shower, when the scrotal skin is more relaxed. If you would like to find out more about self-examination, call the National Cancer Helpline Common symptoms: A painless swelling or lump in one of the testicles The scrotum may feel heavy. Other symptoms: Backache Stomach ache Shortness of breath Painless lump in the side of the neck Hormone imbalance tender nipples or enlarged breasts. How does the doctor make the diagnosis? Most men begin by visiting their family doctor. If your doctor has concerns about you, he or she will refer you to a hospital for further tests. At the hospital the doctor will ask you some questions about your health before examining you. The doctor may send you for an ultrasound of the scrotum and testes. A blood test may be done and a chest X-ray taken to check your general health. Ultrasound of the scrotum and testes This test is carried out in the X-ray department of the hospital. A picture is built up of the inside of the scrotum and the testes using sound waves. A nurse will ask you to lie on your back. When you are ready, he or she will spread gel over the area to be scanned. A small device like a microphone, which produces sound waves, is used to take the scan which is converted into a picture by a computer. This test is painless and takes about 10 minutes to do. Surgery If your doctor suspects that the swelling is cancer, the only way to confirm this is to remove the affected testicle and examine it No operation under a microscope. Removing a piece of the testicle or course of (biopsy) is not recommended for diagnosing testicular action can cancer, as it may cause the disease to spread or recur. Before take place any operation make sure that you discuss it with your without your surgeon. No operation or course of action can take place consent. without your consent.

8 12 Understanding testicular cancer The surgical removal of a testicle is called an orchidectomy. Your surgeon will admit you to hospital and the operation will be carried out quickly, as it is most important to remove the cancer as soon as possible. Orchidectomy is done under general anaesthetic. A small cut is made in the scrotum, and the affected testicle is removed. The scrotum will be smaller than before. You may have some pain for a day or two after the operation and some swelling or bruising of the scrotum. Your doctor will give you painkillers if you need them. Most men can go home 2-3 days after the operation. If the cancer is confined to the testicle, you may not require any further treatment. However, you will have to attend hospital for regular check-ups, which will include blood tests and scans. The removal of one testicle does not affect your ability to have an erection or father children. This is explained in more detail on page 36. If you are concerned that the loss of a testicle will affect your body image, an artificial testicle (prosthesis) can be placed in your scrotum to give a normal appearance. Your doctor can give you more details. Further tests If you have testicular cancer your doctor will want to do other tests. This is known as staging. These extra tests are very important, as they will show if the disease extends to other parts of the body. The results of the tests will also help to decide on the best treatment for you. The tests may include: Blood tests: Some testicular cancers produce chemicals that are released into the bloodstream. The three main chemicals Understanding testicular cancer 13 produced are alpha-fetoprotein (AFP), beta human chorionic gonadotrophin (BHCG) and lactate dehydrogenase (LDH). They are sometimes called blood tumour markers. These chemicals are not harmful to your health. Some tumours may produce all of the chemicals but others may produce one or none at all. If the cancer is releasing these chemicals into the bloodstream, they can be useful blood tumour markers for confirming diagnosis and for indicating whether the cancer has spread. They are also useful in measuring the response to treatment. Sometimes, these tumour markers are the only indication that there is cancer in your system, so checking for them is very important. Samples of blood are taken regularly to check the levels of these markers throughout your treatment and during the follow-up period. CT scan (CAT scan): This is a special type of X-ray that builds up a detailed picture of the inside of your body. The scan is painless. You may have to fast for 4 hours before the scan. You may be given a special drink or injection which helps show up parts of the body A CT scan

9 14 Understanding testicular cancer Understanding testicular cancer 15 on the scan. It is important to let the radiographer know if you are allergic to iodine or have asthma before you take the drink or injection. The injection may make you feel hot all over for a few minutes. Preparation for a CT scan can vary. The doctor or nurse in your hospital will tell you what to do. This test is usually done as an outpatient. It will take about a week for all the test results to come back. This can be an anxious time for you. It may help to talk things over with a relative or close friend. You may also wish to call the National Cancer Helpline to speak to one of our specially trained nurses. To sum up Testicular cancer is diagnosed by removing the affected testicle and examining it under a microscope. Depending on the results of this test you may need: Blood tests Chest X-ray CT scan (CAT scan) Ultrasound. Treatment and side-effects After the tests, what about treatment? Surgery is usually the first treatment for testicular cancer. Radiotherapy and chemotherapy may be used alone or together after surgery. The aim of treatment is to cure the cancer while causing as little damage as possible to other tissues and organs. A team of specialists will plan your treatment. The kind of treatment chosen for you is based on many factors. These include the type of testicular cancer you have and the tumour marker levels. Other factors include the extent of the cancer, if any other organs are involved and if you have any other health problems. The type of testicular cancer you have will depend on the cells seen under the microscope. There are two main types of testicular cancer: Seminoma: mainly affects men between the ages of 30 and 50. One in three testicular cancers are seminomas. Non-seminoma: includes teratomas, embryonal cancers and the mixed germ cell tumours. These cancers mainly occur in men between the ages of 15 and 30. You may notice that other people with testicular cancer are not receiving the same treatment as you. Their cancer may not be the same type or be at the same stage as yours, so their treatment needs will be different. At this time you might be anxious about what is going to happen next. Do not be afraid to ask your doctor or nurse. You may want to use the blank page at the back of this booklet to write down your Cancer Helpline Ê

10 16 Understanding testicular cancer Understanding testicular cancer 17 questions and the answers you receive. Your doctor will talk to you and tell you about your treatment. Some people find it helpful to have another medical opinion to help them decide about their treatment. Doctors can refer you to another specialist if you think that would be helpful. Treatment for seminoma Surgery, radiotherapy and chemotherapy are very effective in the treatment of seminoma. The disease is curable in the majority of cases. Radiotherapy or chemotherapy is usually given following surgery even if the cancer is confined to the testicle. This is because some testicular cancers carry a high risk of recurrence following surgery. This is called adjuvant treatment. If the tumour has spread to other parts of the body you will need chemotherapy. You will have to attend your cancer specialist for check-ups at regular intervals following treatment. These visits will include blood tests, X-rays and CT scans. Treatment for non-seminoma Surgery and chemotherapy are the two treatments most commonly used to treat this type of testicular cancer. Both treatments are very effective and the majority of these cancers are curable. If the tumour is found at an early stage and the tumour markers return to normal following surgery, you may not require further treatment. However, you will have to attend your cancer specialist and have blood tests, X-rays and CT scans at regular intervals. This is because some testicular cancers carry a high risk of recurrence following surgery. If the tumour has spread to other parts of the body, such as the lymph nodes in the abdomen or the lungs, or you are at a high risk of recurrence, you will need chemotherapy. You may need further surgery when initial treatment for testicular cancer is over. Further surgery Further surgery is sometimes required after radiotherapy or chemotherapy. This is done to remove any remaining enlarged lymph nodes or secondary tumours. The two main reasons for this are: Testicular cancer can spread to the lymph nodes in the abdomen or to other organs such as the lungs. These secondary tumours can be quite big by the time the testicular cancer is diagnosed. Chemotherapy or radiotherapy may cause the tumours to shrink down in size and disappear completely. Any remaining tumours should be smaller and easier to remove following treatment. After treatment, even though your doctor feels that you are free from cancer, scans may continue to show suspicious looking areas. This is because scar tissue is sometimes left behind following treatment. Sometimes a PET scan, which is a special type of X-ray, can show if there is scar tissue or persistent cancer present. If the results of the scan are positive for cancer, or there is some uncertainty about the results of the scan, your surgeon may decide to operate again. All or as much as possible of the scar tissue is removed and examined under a microscope. Surgically removing the glands at the back of the abdomen may interfere with ejaculation (the release of sperm from the penis). This may make you less fertile. However, it does not interfere with your ability to have an erection or orgasm. Your doctor will discuss this potential side-effect with you before your operation.

11 18 Understanding testicular cancer Radiotherapy This is a treatment where high energy X-rays are aimed at a cancer to cure or control it. It is often used to treat seminomas but not usually for non-seminomas. The X-rays are delivered through a machine called a linear accelerator. This is known as external radiotherapy. A linear accelerator Radiotherapy is used to treat seminoma to prevent the disease coming back after surgery, or for disease that has spread to the glands at the back of the abdomen. It is a highly successful treatment, which will cure almost all men with this type of cancer. Planning your treatment Before radiotherapy your radiation oncologist plans how best to deliver your treatment. He or she will decide how much radiotherapy is needed to treat the cancer while doing the least possible damage to normal cells. On your first visit to the radiotherapy department you may be asked to lie under a machine called a simulator that takes X-rays of the area to be treated. You are usually given an injection of a kidney dye, which will show up Understanding testicular cancer 19 on X-ray. The dye will clearly show areas to be avoided by the radiation beam. Treatment planning is a very important part of radiotherapy. It may take a few visits before your treatment can go ahead. You will be marked on the skin where you are to get treatment so that the X-rays can be aimed at the same area each day. Usually a single tattoo is used to avoid repeated marking of your skin. Before starting radiotherapy, your nurse or radiation therapist will tell you how to look after your skin during and after treatment. Getting your radiotherapy Having radiotherapy is quite straightforward. You will have to come for treatment every day during the week with a rest at weekends. Your treatment may go on for 3-4 weeks. Each treatment session only takes a few minutes. You will not feel any pain during treatment but you will have to lie still. How much treatment you receive will depend on the extent of the cancer. Your doctor will discuss your treatment with you. External radiotherapy does not make you radioactive. It is perfectly safe for you to mix freely with family and friends. Each time you go for treatment you will go into a radiotherapy room. The radiation therapist will ask you to lie in a certain position under a radiotherapy machine. When you are ready he or she will leave the room. The machine will be turned on and your treatment given. Even though you are on your own in the room, your radiation therapist can see you all the time through a closed circuit camera. You can talk to the radiotherapy staff through an intercom if you need to. External radiotherapy does not make you radioactive. It is perfectly safe for you to mix freely with family and friends.

12 20 Understanding testicular cancer Understanding testicular cancer 21 Will I have any side-effects? Radiotherapy is given directly to the site of the cancer and the nearby lymph nodes. Therefore, the side-effects that occur are related to the part of the body being treated. How severe these side-effects are will vary from one person to another and depend on the amount of radiotherapy received. Your doctor or nurse will explain how these effects can be managed before you start your treatment. The side-effects may include: Feeling sick or getting sick Your nurse can give you tablets to help prevent this. Take them one hour before treatment. Eat small amounts often. Skin changes During radiotherapy the skin in the treated area may become red and sore. It may look like sunburn. A special cream can be used to treat this problem. Only use creams recommended to you by the nurses or radiation therapists. If you need to wash the area use warm water and pat it dry with a soft towel. Do not rub the skin while washing and drying. Avoid perfumed creams or powders. Check with your radiation therapist or nurse before applying anything to your skin. Tiredness This can build up over the course of your treatment. You may feel tired because of the treatment itself or perhaps you have to travel long distances to come for treatment. Rest as much as you can. Cut down on the things you normally do while you are on treatment. Hair loss You may have some hair loss in and around the pubic area or abdomen. If this happens it will fall out quickly, but try not to worry, as the hair should start to grow again when treatment is over. However, the hair may be thinner or finer than it was before. These or any other effects you develop are monitored very carefully during the radiation treatments. Information on how to prevent side-effects and medication will be prescribed if needed. Most of these side-effects should go away when treatment is over, but do let your doctor know about them if they continue. For more information about radiotherapy and its side-effects, call the National Cancer Helpline for a copy of the booklet, Understanding Radiotherapy. To sum up Radiotherapy is the treatment of cancer using high energy X-rays. You will not feel any pain while you are getting treatment. Each session only takes a few minutes each day. Treatment may continue for 3-4 weeks depending on the cancer. Cancer Helpline Ê

13 22 Understanding testicular cancer Understanding testicular cancer 23 Chemotherapy Chemotherapy is a treatment using drugs that cure or control cancer. Chemotherapy is better for treating cancer that has spread further, because it is carried by the bloodstream to most parts of the body. These drugs are used on their own or in various combinations. Men with large seminomas usually have chemotherapy. It can also be given to men with non-seminoma, either to prevent the cancer coming back after surgery or to treat any cancer that has spread. Most men with testicular cancer who need chemotherapy will get a combination of two or three drugs. It is not possible to receive all the treatment required during one visit to hospital. You may have to attend hospital at regular intervals for 3-6 months. There is usually a rest period between each course of treatment to allow your body time to recover from the effects of the drugs. Each visit to hospital for treatment is called a cycle. The number of cycles you have will depend on the stage of your cancer and how well it is responding to treatment. Chemotherapy may be given directly into a vein as an injection or by intravenous infusion (drip). Depending on the type of chemotherapy you need you might have to stay in hospital overnight for treatment. However, some treatments are given in day care. Intravenous chemotherapy If your treatment is by injection or infusion at regular intervals, you may find it helpful to have a central venous line inserted. This device can be left in place throughout your treatment. It will make it much easier for you to receive your treatment and spare you the B C A A The central line is placed in a large vein here B The line is threaded under your skin C The line reaches the surface of your skin here discomfort of repeated needle jabs. A central venous line is a length of narrow flexible plastic tubing (a catheter). It is inserted into a main vein and brought out through your chest or arm. You will be given a local anaesthetic before the line is inserted. In most cases it only takes a few minutes to put in. Removing it is very simple, sometimes needing a small local anaesthetic. There are other ways to have easy access to veins for taking blood and for treatment. Sometimes the catheter is attached to a port a small round metal or plastic disc placed under the skin. This port can be used for as long as needed. Talk to your doctor or nurse about the different ways of getting intravenous chemotherapy. He or she will explain the different options to you. If you would like to find out more about caring for a central venous line there is a video available. Contact the National Cancer Helpline and we will send you a copy free of charge. There are many chemotherapy drugs used in the treatment of testicular cancer. The drugs used include cisplatin, etoposide and bleomycin. These drugs are used in combination with each other. This treatment is sometimes called BEP. Your doctor may decide to leave out the bleomycin if the cancer has a low risk of

14 24 Understanding testicular cancer recurring. Other chemotherapy drugs are used to treat testicular cancer as well. Before any chemotherapy is given your doctor will discuss your treatment options with you. Chemotherapy for cancer that recurs or has spread to other parts of the body at time of diagnosis Most men have no further problems after their first treatment for testicular cancer, but for a few, the cancer may come back. The cancer may have spread to other organs by the time the diagnosis is made. It is possible to have this treatment and have sideeffects that are well controlled with medication. It is important to know that even if the cancer affects other parts of the body or recurs, it can still be treated and even cured. In many cases, chemotherapy alone or surgery following chemotherapy will cure the disease. Before a decision is made on the best treatment for you, your doctor will consider your general health and where the cancer is located. He or she will also take into account the kind of treatment you have had in the past. Usually several cancer specialists will be involved in your treatment. Side-effects of treatment The side-effects of chemotherapy vary from one person to another and depend on the drugs used. It is possible to have this treatment and have side-effects that are well controlled with medication. These unwanted effects happen because while the chemotherapy is working on the cancer cells, it can have an effect on normal cells too. Before you start your treatment ask your doctor about any side-effects that may occur. Do tell your doctor about the Understanding testicular cancer 25 way you are feeling during your treatment as most side-effects can be eased with medication. In most cases, the side-effects go away when the treatment ends or soon after. Your doctor or nurse can give you something to stop most of them or make them easier to cope with. Side-effects may include: Infection Chemotherapy can make you more likely to get infections. This happens because most chemotherapy drugs affect the bone marrow that makes the white blood cells that fight infection. If you do not have enough white cells even a minor infection such as a cold or a sore throat could make you quite ill. During each treatment cycle you will have blood tests to make sure that you have enough white blood cells. Your doctor will ask you to watch out for signs of infection at all times especially if your white cell count is low. These signs could include feeling shivery and unwell or running a high If you are temperature of 38 0 C or higher. If this happens tell your feeling shivery hospital doctor straight away even at night-time. He or she and unwell or will tell you what to do. Some hospitals prefer you to ring running a them directly. Check this out with your nurse or doctor temperature of before you start treatment. If you have a high temperature 38 0 C tell your or feel unwell you will need to have a blood test to check if hospital doctor your white cells are low. You may need medication to treat straight away. the infection. You will be more at risk of picking up infections. Try to avoid close contact (such as hugging or kissing) with people who have colds or flu and other infections such as chickenpox, shingles or measles. Let your doctor know if you are in contact with these or

15 26 Understanding testicular cancer Understanding testicular cancer 27 any other infections. Wash your hands often during the day, especially before you eat and after going to the toilet. Infection is a serious complication of chemotherapy. It needs to be treated as soon as possible. Talk to your doctor or nurse. They will give you more information. Bruising Sometimes as a result of chemotherapy you may bruise more easily for no apparent reason. This is known as purpura. Platelets are blood cells that help to make your blood clot to stop the bleeding if you hurt yourself. If there are not enough platelets in your blood (thrombocytopenia), you may bruise or bleed more easily, even from a minor injury. Let your doctor or nurse know straight away if you are bruising easily or notice tiny red spots under the skin (petechiae), which can look like a rash. He or she will tell you what to do. Feeling sick (nausea) or getting sick Not everyone feels sick or gets sick with chemotherapy. But There are if you do it can happen before, during or after treatment. It very effective may last for several hours. There are very effective drugs drugs available available now that prevent or reduce nausea and vomiting. now that You will be given anti-sickness medication before receiving prevent or chemotherapy. Ask your doctor to give you medication to reduce nausea stop you feeling sick after treatment. Take your medication and vomiting. as directed by your doctor. Numbness or pins and needles in the hands and feet Some chemotherapy drugs used to treat cancer may cause tingling or burning sensations in your hands and feet. You may have trouble picking up small objects or buttoning up a shirt or jacket. This side-effect is almost always temporary and goes away after treatment stops. However, it may take several months for the numbness to go away completely. Tell your doctor or nurse if this happens, as some changes may need to be made to your treatment. Shortness of breath In rare cases, bleomycin, one of the drugs that can be used to treat testicular cancer, may cause inflammation of the lungs. This can lead to shortness of breath. Your breathing ability will be assessed before, during and after treatment. If you notice a change in your breathing tell your doctor as soon as possible. He or she may stop or reduce the amount of drug you receive. Diarrhoea Passing watery bowel motions more than twice a day is known as diarrhoea. You may also have cramping and/or abdominal pain. If this occurs it is important to drink lots of clear fluids to replace the fluid you are losing. You must tell your doctor or nurse if you have diarrhoea for more than 24 hours. There are tablets that can stop this side-effect of treatment. Sore mouth Some drugs used to treat testicular cancer can cause a sore mouth. They can also cause little ulcers to appear on the tongue, gums and inside the cheeks of your mouth. Try to keep your teeth, gums and mouth very clean, as this will reduce the risk of getting a mouth infection. Clean your teeth after each meal using a soft toothbrush. If you have dentures remove them if your gums are sore. There are special mouthwashes available. Your nurse will advise and show you how to use them properly. Feeling very tired You may feel very tired during treatment. This tiredness can last

16 28 Understanding testicular cancer Understanding testicular cancer 29 Your hair will start to grow again when treatment stops. for some weeks after treatment has ended. If this happens take things easier. Do less than you would normally do. Rest more if you can. Ask your family or friends to help you at work or at home. For more information on fatigue turn to page 39. You can also call the National Cancer Helpline for a copy of the free booklet, Coping with Fatigue. Not wanting to eat It is best to eat as much you can whilst on chemotherapy. Eat smaller amounts more often. If you do not feel like eating during treatment, you could try replacing some meals with special food supplements. The dietician will be available to advise you. Hair loss (alopecia) This is a common side-effect of the drugs used to treat testicular cancer. If you do lose your hair it usually occurs about 2-3 weeks into chemotherapy. Try not to worry, as your hair will start to grow again when treatment stops. You might feel upset at the thought of losing your hair. Talk to your nurse or medical social worker about your feelings. He or she will help you find ways to cope with hair loss. You can get a wig when this happens or you may prefer to wear a hat or bandana. If you would like a wig it is better to organise it before your hair falls out. You will then get a better match to your own hair colour. Your medical social worker or nurse may be able to advise you about getting a wig. If your hospital does not have a social worker ask if they have the name of a wig fitter that you could go to see. Your local hairdresser may be able to help. In some cases it is possible to get financial assistance towards the cost of a wig or hairpiece. Ask your medical social worker or nurse. For some patients the amount of hair loss is small. A wig may not be needed. To sum up Infertility Some of the drugs used to treat testicular cancer may cause infertility. It may be temporary or permanent. See page 36 for more information. Sex There is no medical reason why you cannot have sex while on chemotherapy although you may feel too tired. However, you should not assume that you are infertile during or after treatment. If you are having sex you must use a condom during treatment and for some time afterwards. See page 38 for more information. If you have a different side-effect or symptom from those listed that concerns you, tell your doctor or nurse straight away. He or she will tell you what to do. For more information about chemotherapy and its side-effects, call the National Cancer Helpline for a copy of the booklet, Understanding Chemotherapy. Chemotherapy is a treatment using drugs to cure or control cancer. The drugs can be given in tablet form, directly into a vein as an injection or through an intravenous infusion (drip). The side-effects vary from one person to another and depend on the drugs used. Most side-effects are well controlled with medication. Cancer Helpline Ê

17 30 Understanding testicular cancer Understanding testicular cancer 31 High-dose treatment with stem cell support For some men, even though they have been treated for testicular cancer, there is still a high risk of the cancer coming back. Others may need more treatment, as initial treatment has not completely succeeded. Very high-dose chemotherapy can sometimes be given. Because this treatment destroys the bone marrow that produces the blood cells essential for good health, bone marrow needs to be removed before treatment and replaced afterwards. The two ways of doing this are discussed below. However, of the two methods, it is more likely that you will be offered a peripheral blood stem cell transplantation (PBSCT) rather than an autologous bone marrow transplant (ABMT). Peripheral blood stem cell transplantation When the cells are obtained from the bloodstream this process is called peripheral blood stem cell transplantation (PBSCT). These cells, normally found in the bone marrow, are called stem cells and are the basic cells from which all other blood cells grow. Before these stem cells can be collected from the bloodstream they must be moved out of the bone marrow. This occurs when the bone marrow is stimulated to produce a lot of stem cells. The bone marrow gets overcrowded and the extra stem cells spill over into the bloodstream. To make this happen your doctor will give you chemotherapy and/or a special drug called a growth factor. The stem cells are then collected from the bloodstream. The chemotherapy is usually given over a couple of days. The growth factor is given daily for days as a small injection under the skin. You can either do this yourself or your doctor or nurse can give it to you. At about day 10 of the injections when your blood is ready the stem cells are collected. This takes about 3-4 hours each day for two to three days. In some cases, it is possible to collect all the stem cells required in one day. The stem cells are collected from a central venous line or from intravenous lines (drip) inserted into large veins in your arms. Blood is taken out through the central line or drip into a machine that separates the stem cells from the rest of your blood. The stem cells are collected into a bag and the rest of the blood is returned to you. The stem cells are frozen until you have had the high-dose chemotherapy. Then they are thawed out and returned to you through a drip or central line. These stem cells will help your bone marrow recover from the effects of treatment. This normally takes about two weeks. However, it may take 6-12 months before you are fully recovered from the effects of high-dose chemotherapy. You may need to stay in hospital for several weeks due to infection or other effects of treatment. Autologous bone marrow transplant If the cells are taken directly from your own bone marrow this is called an autologous bone marrow transplant (ABMT). The bone marrow is usually taken from the hip bones. A general anaesthetic is given for this procedure. You are not allowed anything to eat or drink for several hours before the anaesthetic. Your doctor may give you a sedative before going to theatre. This will help you feel more relaxed. When you are asleep a thin needle is passed through the skin into

18 32 Understanding testicular cancer Understanding testicular cancer 33 the hip bone. The bone marrow is drawn up through the needle into a syringe and stored until required. It is usually necessary to take bone marrow from different places in both hips to make up the amount needed. The procedure takes about minutes to complete. You cannot eat or drink anything for at least 4 hours afterwards. Your hips may feel tender and sore for a few days after the procedure. Ask your nurse for painkillers if you need them. After high-dose chemotherapy, which is normally given over a few days, the bone marrow is returned by intravenous infusion (drip). The bone marrow can be infused through a central line or something similar. It will take your bone marrow some weeks to recover and resume its role of fighting infection. However, it may take 6-12 months before you are fully recovered from the effects of high-dose chemotherapy. You may need to stay in hospital for several weeks due to infection or other effects of treatment. Before consenting to either of the above treatments make sure you understand why you should have it and what are its chances of success. You will also need to know about the side-effects of such treatments and how long they will last. Talk to your doctor or nurse. Ask them to go over the procedure with you in detail. Write down your questions if necessary. There is a Bone Marrow Transplant Support Group available to help and support you at this time and throughout treatment. Call the National Cancer Helpline for more information. Research what is a clinical trial? Research into new ways of treating cancer goes on all the time. Doctors can only find new and better ways of treating cancer by using new drugs or new combinations of drugs that are already in use. Many patients with cancer take part in research studies. When a new treatment is being developed, it goes through stages of research called phases. If the treatment looks as if might be useful in treating cancer, it is then given to patients in research studies called clinical trials. These aim to find a safe dose, see what side-effects may occur and identify which cancers can be treated. If early studies suggest that a new drug may be both safe and effective, further trials are carried out. These aim to: Find out if the treatment is better than existing ones. Find out if extra benefits result when the new treatment is given together with existing ones. Compare the new treatment with current best standard treatments. Your doctor may ask you to try a new treatment. There are many benefits in doing this. You will be helping to improve knowledge about cancer and the development of new treatments. You will also be carefully monitored during and after the study. You cannot be included in a clinical trial without your permission. You can only give this consent if the trial has been fully explained to you, so that you understand what it is about. This is called informed consent. You will also need time to think about it and discuss it with your family or friends. If you decide not to take part, you will still be given the best treatment available. Even after agreeing to take part in a trial, you can still withdraw at any time if you change your mind. As part of research into the causes of cancer, your doctors may ask your permission to store some samples of your cancer cells or blood. If you would like more information, a booklet called Understanding Cancer Research Trials (Clinical Trials) is available. Call the National Cancer Helpline for a copy.

19 34 Understanding testicular cancer Understanding testicular cancer 35 Teenagers and chemotherapy Most teenagers manage to go to school in between their courses of chemotherapy. It is important to talk to the teachers about your son s illness. Ask them to let you know when there are any infections, such as chickenpox or measles, in your son s class. It is also advisable not to let your child get overtired, so games and PE are probably best avoided during the period of treatment. Your child may not be keen to go back to school as he might be embarrassed about hair loss. However, it is very important for your child to keep in touch with his friends. If there is a problem, talk about it with your doctor and the schoolteachers. It can usually be resolved by counselling and gentle reassurance. Follow-up Whatever treatment you receive for your cancer, you will have to come back for regular check-ups. Whatever treatment you receive for your cancer, you will have to come back for regular check-ups. In the beginning these are quite often. These visits may include seeing your doctor and having some tests such as blood tests, X-rays and scans. These check-ups will continue for a number of years but will become less frequent as time goes by. These visits are most important, as they will allow your doctor to check for signs of testicular cancer and to follow up on any ongoing side-effects that you may have. He or she will also be able to check for new side-effects that may develop after you have finished treatment. It is better to be aware of these as early as possible so that further effective treatment can be given. If you are between check-ups or you have a symptom or problem that worries you, let your doctor know by making an appointment to see him or her as soon as possible. Will treatment affect your sex life? There is no medical reason why you cannot have sex while on chemotherapy or radiotherapy if you feel like it. One of the most common questions men ask before treatment for testicular cancer is whether their sex life will be effected. The removal of one testicle will not affect your sexual performance or your ability to have children, if the other testicle is healthy. This is because the remaining testicle will produce more testosterone and sperm to make up for the removal of the other testicle. There is no medical reason why you cannot have sex while on chemotherapy or radiotherapy if you feel like it. Cancer Helpline Ê

20 36 Understanding testicular cancer Understanding testicular cancer 37 However, coming to terms with the fact that you have cancer can take quite a while. Your emotions will be turned upside down. It can be hard to relax when you have a lot on your mind. You may also feel tired from the effects of treatment. As a result you may have less interest in sex. This is a normal way to feel at this time. One common fear is that cancer can be passed on to your partner during intercourse. This is not true. You can resume a sexual relationship if you want to, but if you are receiving chemotherapy or radiotherapy or have recently completed treatment you should not assume that you are infertile. You should use a condom. There is no set time for you to be ready to have sex again. It varies from person to person. Once you return to your usual routine your interest in sex should return. If you have a supportive partner, you may find that talking about your feelings will help ease your anxiety. Even if you do not feel like having sex you can still enjoy a close and loving relationship with your partner. You should not feel guilty or embarrassed to talk to your doctor or nurse about what is troubling you. He or she may refer you for specialist counselling if you think that would be helpful. more detail before you start your treatment. If you have a partner, you may find it helpful if you see the doctor together so that you can both talk about your fears and worries. The prospect of infertility can be difficult to come to terms with. You may feel embarrassed at the thought of talking about If you want to this very personal matter. You may also want to get started find out more on your treatment straight away. At this time, whether you about sperm will be able to have children should not be a priority. banking talk to However, as testicular cancer is curable in so many cases, it your doctor or is most important that you give yourself some time to think nurse. about the future. It may help to talk to a family member or a close friend about your concerns. Ask your doctor or nurse for advice on what you should do. If the tests show that your sperm count is within normal limits it may be possible to store sperm before treatment begins, for use at a later date. To do this you will be asked to give several sperm samples. There will be a couple of days break between each sample to make sure good samples are obtained. The sperm is frozen and stored until required. Sperm banking can be done at the HARI Unit at the Rotunda Hospital in Dublin. Fertility Many men go on to father normal healthy babies after they have had treatment for Many men go on to father normal healthy babies after they have had treatment for cancer. However, some treatments for testicular cancer, and sometimes the disease itself, can cause infertility. Sperm tests carried out before treatment will show if you are infertile or your sperm count is low. This infertility may be temporary or permanent. Your doctor will talk to you about this in You may worry that the process of banking sperm may cause a delay in starting treatment. This is seldom the case as it can be done while tests and procedures are being carried out and the results of tests awaited. If you want to find out more about sperm banking talk to your doctor or nurse. He or she will give you more information. Call the National Cancer Helpline You can talk to a nurse who will tell you what services are available.

21 38 Understanding testicular cancer Understanding testicular cancer 39 Chemotherapy Chemotherapy may cause infertility. It can be temporary or permanent. Even though doctors know that some chemotherapy drugs may cause infertility it is difficult to say if and when this will happen. For this reason it is usually advisable to store sperm before starting treatment. If the infertility is temporary the rate at which the sperm count will recover varies from man to man. It generally returns to normal within 2 to 3 years. The effect of chemotherapy on semen (the liquid that carries the sperm) and sperm is uncertain. Because of this you should use a condom during sex throughout treatment and for about a month afterwards (this protects your partner and avoids any stinging sensation during sexual intercourse). If there is a risk that your partner could become pregnant you should continue to use condoms or other reliable methods of contraception for some time afterwards. This is because there is a risk of miscarriage or birth defects in children conceived during or just after treatment. Many doctors believe it is better for your partner not to get pregnant for 2 years after your chemotherapy ends. This gives you a chance to recover from the effects of treatment and by this time the likelihood of the disease coming back is much less. Surgery You may need an operation to remove the lymph nodes in the pelvis or at the back of the abdomen, if they are still enlarged after radiotherapy or chemotherapy. This type of surgery can affect the nerves that go to the sexual organs. If this occurs you may have problems with ejaculation (the release of semen). This only happens in a few men and may resolve over time. The sensation of orgasm is not usually affected. Sometimes the damage is permanent. However, this problem is becoming less common as new ways of performing this operation are being developed all the time. Radiotherapy Most radiotherapy treatments for testicular cancer have no effect on your ability to father children. However, a small dose of radiation does reach the remaining testicle during treatment. If you are having sex and your partner is still young enough to have children you must use a reliable method of contraception throughout your treatment and for some time afterwards. This is because there is a risk of miscarriage or birth defects in children conceived during or just after treatment. Many specialists recommend that you wait for 2 years after radiotherapy before trying to start a family or have more children. This time gives your body a chance to get over the effects of the cancer and its treatment. Fatigue Fatigue is something that lots of people complain of from time to time even if they are not ill. For most people it is nature s way of telling them to slow down and take some rest. Fatigue is a common symptom of cancer and is often described as an overwhelming tiredness. You may find it difficult to concentrate or make decisions. The reason for the fatigue can be hard to identify. Fatigue may be caused by anxiety when a diagnosis of cancer is made and the additional stress caused by treatment. You may find it hard to identify the reasons for your tiredness but there is something you can do to help.

22 40 Understanding testicular cancer Understanding testicular cancer 41 What you can do Treatment may help by relieving symptoms such as pain or backache, allowing you to get back to your normal routine. Ask your doctor before you start treatment what side-effects you can expect. If you are feeling worried and find it hard to sleep at night, tell your doctor or nurse. He or she will help you. Try talking to your close family or friends about your concerns. If you find this difficult ask to see a medical social worker or counsellor. He or she will help you to find ways to cope. If your illness allows you to take part in physical exercise, try to do some on a regular basis. For example, 30 minutes of exercise 3 times a week might be a realistic goal and will boost your morale when you achieve it. You may notice that you have lost weight. This may be due to the cancer or the treatment you are getting. Sometimes when you are feeling weak and tired you may lose interest in your food. Ask for help in preparing your meals. Take plenty of clear liquids such as water or fruit juice. Get others to help you around the house, with travelling to hospital, or with jobs around the house. Whether you work or not during treatment will depend on the kind of work you do and how you are feeling. It is probably better to make this decision when you have had one or two courses of chemotherapy or some radiotherapy. You will have a clearer picture of how the treatment affects you. If you are still in full-time education think about putting your studies on hold until your treatment is over. Use the extra free time to do something that you especially enjoy. There is a free booklet on fatigue available. If you would like more information, call the National Cancer Helpline for a copy of Coping with Fatigue. Complementary and alternative therapies There is great interest today in complementary and alternative treatments for cancer. Some people find them helpful and beneficial during their illness. In many countries the way cancer is treated depends on the culture and environment in which you live. In Ireland cancer treatments are based on scientific research, which allows the response to treatment, side-effects and the general effect of treatment to be predicted. You may hear about the following types of treatments or therapies. Conventional therapies Conventional therapies are treatments which doctors use most often to treat people with cancer. These include surgery, radiotherapy, chemotherapy and hormone treatments. They are tried and trusted methods where the experience with patients is over a long period of time. Many of the treatments have been tested in clinical trials.

23 42 Understanding testicular cancer Understanding testicular cancer 43 Complementary therapies Complementary therapies are treatments that are sometimes given together with conventional treatment. They include therapies such as: Meditation Relaxation Visualisation Gentle massage Aromatherapy Reflexology Music, art and dance therapy Nutrition therapy Shiatsu Yoga Acupuncture Hypnotherapy. Many people find complementary therapies are very helpful in a number of ways. You may feel more positive about yourself and your illness. You may be better able to cope with the physical sideeffects of cancer and the distressing emotions that cancer can often bring. Some complementary therapies also focus on the spiritual dimension of a person to aid healing. Alternative therapies Alternative therapies are generally treatments that are used instead of conventional treatments. These therapies include: Diet therapy Megavitamin therapy Herbalism. Many doctors do not believe that such treatments can cure or control cancer. If you decide to have complementary or alternative treatments Before you decide to change your treatment or add any methods of your own, be sure to talk to your doctor or nurse. Some methods can be safely used along with standard medical treatment. But others can interfere with standard treatment or cause serious side-effects. For that reason, it is important to talk openly with your GP or cancer specialist if you are thinking of having treatment with either a complementary or alternative practitioner. Don t be afraid that your doctor will be offended by your wish for other treatments. In fact, he or she may be able to recommend therapies that could be safe and useful for you. Be cautious in selecting a practitioner. Don t be misled by promises of cures. At present in Ireland, this is an unregulated area with no register of certified practitioners. Ensure that the practitioners you plan to visit are properly qualified and have a good reputation. Check to see if they belong to a professional body or not. If you are unsure but would like to know what other patients have found helpful, contact your doctor or a patient support group. Also, it is important to make sure that the practitioner is charging a fair price for your treatment. More information is available in a free booklet from the Irish Cancer Society called Cancer and Complementary Therapies. If you would like a copy or more advice, call the National Cancer Helpline Cancer Helpline Ê

24 Understanding testicular cancer Coping and emotions How to cope with your feelings 45 You might feel numb and shocked when you are told that you have cancer. You can feel swamped with many different emotions ranging from disbelief to anger. At first the news may be very hard to take in. It may all seem unreal. All these feelings are normal and to be expected. It does not mean that you are not coping. Rather they are part of the process you must go through in coming to terms with your illness. Your family and friends may be feeling the same way and need time to get used to it. Reactions differ from one person to another there is no right or wrong way to feel. Shock and disbelief I can t believe it. It can t be true. Shock is often the first reaction when a diagnosis of cancer is made. Most people think, It will never happen to me. It will take a while for the news to sink in. At this stage you may be getting a lot of information about your illness. You may ask the same questions over and over again or seem to accept the news calmly. These are common reactions to a diagnosis of cancer. Because you don t quite believe what is happening, you may not want to talk about your illness, especially to your close family and friends. Sense of loss I ll never be the same again. I m not a whole man. These worries are understandable, especially if you are young.

25 46 Understanding testicular cancer Understanding testicular cancer 47 The real facts about cancer and its treatment are not as frightening as you might imagine. Give yourself time to think about them and try to talk them through with your partner or close friend. Many men feel that by losing a testicle they may also be losing part of their sexual identity and this in turn can affect their sexual relationships. Again, if this applies to you, it s a question of giving yourself time and, if necessary, talking through your worries with a professional counsellor. If it might help, contact the National Cancer Helpline for a copy of the booklet, Sexuality and Cancer. Fear and uncertainty Am I going to die? Will I be in pain? For most people when they are told they have cancer the first question is Am I going to die? Cancer is a very scary word. It brings to mind many stories most of them untrue. In fact nowadays many cancers can be cured. When cure is not possible the cancer can be controlled for a number of years using modern treatments. There are new treatments being developed all the time. Another common fear is that cancer is always painful. This is not true. Some cancers cause no physical pain at all. If you are in pain there are many drugs that can control it. Other methods of pain relief include radiotherapy and nerve blocks. Being concerned about your future is a normal way to feel. It can be hard for your doctor to predict the outcome of your treatment. Not knowing can make you feel anxious. The more you find out about your illness and its treatment, the less anxious you will be. The real facts about cancer and its treatment are not as frightening as you might imagine. Talk to your doctor about your concerns, as he or she could help you. Discuss what you have found out with your family and friends, as they are probably worried too. Denial There is nothing really wrong with me. I haven t got cancer. Many people cope with their illness by not wanting to talk about it. If that is the way you feel, then just say quite firmly to the people around you that you would prefer not to talk about your illness, at least for the time being. Sometimes, however, it s the other way round. You may find it is your family and friends who are denying your illness. They might appear to ignore the fact that you have cancer. They may play down your worries and symptoms and keep changing the subject. If this upsets or hurts you because you want them to support you, try telling them. Start perhaps by saying that you do know what is happening, and it will help you if you can talk to them about your illness. Anger Why me of all people? And why right now? Anger can hide other feelings such as fear or sadness and you may vent your anger on those closest to you. You might also feel angry towards the doctors and nurses who are caring for you. If you have a religious belief you may feel angry with your God. It is easy to see why you may be deeply upset by many aspects of your illness. So there is no need to feel guilty about your angry thoughts or irritable mood. Relatives and friends may not always be aware that your anger is really directed at your illness and not

26 48 Understanding testicular cancer Understanding testicular cancer 49 against them. If you can, it might be helpful to tell them this at a time when you are not feeling so angry. Or if you would find that difficult perhaps you could show them this section of the booklet. If you are finding it difficult to talk to your family, tell your nurse or doctor. He or she may be able to help you. Blame and guilt If I hadn t this would never have happened. Sometimes people blame themselves or others for their illness, or wonder why it should have happened to them. This may be because we often feel better if we know why something has happened. As doctors rarely know exactly what has caused cancer, there is no reason for you to blame yourself. In testicular cancer, guilt about sexual activity, including masturbation, may be experienced. You should be reassured that there is no link with sexual activity causing testicular cancer. Resentment It s all right for you, you haven t got to put up with this. It is not unusual to feel resentful and miserable because you have cancer while other people are well. You may notice that similar feelings crop up from time to time during the course of your illness for a variety of reasons. Relatives too can sometimes resent the changes that cancer can make to their lives. Withdrawal and isolation Please leave me alone. There may be times during your illness when you want to be left alone to sort out your thoughts and feelings. This can be hard for your family and friends who want to share this difficult time with you. Let your family know that whilst you do not feel like talking about your illness at the moment, you will talk to them about it when you are ready. Sometimes depression can stop you wanting to talk. It might be an idea to discuss this with your GP or hospital doctor who may prescribe a course of antidepressant drugs. He or she may decide to refer you to a doctor who specialises in managing the emotional problems of cancer patients. It is common for patients with cancer to feel depressed, so there is no need to feel you are not coping if you ask for help. There are two useful booklet s available Who Can Ever Understand? Talking about your Cancer and Understanding the Emotional Effects of Cancer. If you would like copies, call the National Cancer Helpline Don t bottle up your feelings express them. It is usually helpful to bring these feelings out into the open so that they can be aired and discussed. Bottling up resentment can make everyone feel angry or guilty. Don t bottle up your feelings express them.

27 50 Understanding testicular cancer Understanding testicular cancer 51 Learning to cope After any treatment for cancer it can take a long time to come to terms with your emotions. Not only do you have to cope with the knowledge that you have cancer, but also the physical effects of treatment. Although the treatment for cancer can have some unpleasant sideeffects, many people do manage to live a normal life during treatment. You will need to take some time off for your treatment as well as time afterwards to recover. Just do as much as you feel like and take plenty of rest. It is not a sign of failure to ask for help or to feel unable to cope on your own. Once other people understand how you are feeling they can give more support. What if you are a relative or friend? It can be hard to know what to say when someone close to you is diagnosed with cancer. It may seem best to pretend that everything is fine and carry on as normal. You may not want to add to the person s worry by seeming afraid or by saying the wrong thing. Sadly, denying strong feelings like this can make it even harder to talk openly together and can lead to the patient feeling very lonely. Partners, relatives and friends can help by listening carefully to what the person with cancer wants to say about his or her illness. Don t say too much let them do most of the talking. Above all let them know that you are there when they want to talk or need help. A helpful booklet, Lost for Words How to Talk to Someone with Cancer, for relatives and friends of people with cancer is available from the Irish Cancer Society. Call the National Cancer Helpline for a copy. Talking to children How much you tell children will depend on how old they are. Very young children don t understand illness and need a very simple account as to why their father or brother has had to go to hospital. Slightly older children will need to be told more. A simple story talking about good cells and bad cells may help. Every child needs to know what will happen while you are in hospital. Who will look after them, prepare their meals and take them to school? They also need to be reassured that your illness is not their fault. Whether they show it or not, children feel they may somehow be to blame and may feel guilty. Most children over 10 years of age can grasp fairly detailed explanations of what is wrong. Adolescents can understand much more. They may have special needs in learning to cope with the situation. They may be torn between concern for you and trying to become more An open independent. An open honest approach is usually the best honest way for all children. You may find that your children rebel approach is or turn quiet. This may be their way of showing their usually the best feelings. Even very young children can sense when way for all something is wrong so don t keep them in the dark. They children. may think that things are much worse then they are. There is a booklet, What Do I Tell the Children? A Guide for the Parent with Cancer. Call the National Cancer Helpline if you would like a copy. Cancer Helpline Ê

28 52 Understanding testicular cancer What you can do Many people feel helpless when they are first told they have cancer. They think there is nothing they can do other than hand themselves over to the doctors and hospital. This is not true. There are many things that you can do at this time. If you and your family understand your illness and its treatment you will be better able to cope. Always ask for information that is personal from your own doctors. Follow your doctor s instructions carefully. Take your medication. If you forget and are not sure what to do, ask your doctor. Write down the answers if you want. Let your doctor know if you have any problems or worrying sideeffects. He or she can decide what to do to help you. If you say nothing a small problem can become more serious. After 3 or 4 cycles of treatment you may feel much better. You may question the need for further treatment. Finishing your course of treatment with as few delays as possible between cycles is most important. Not completing the treatment may leave some cancer cells untreated. This may affect the outcome of treatment. At times you may not be able to do the things you used to take for granted. As you begin to feel better you can set yourself some simple goals and slowly build your confidence again. Take one step at a time. Many people talk about fighting their cancer. This can help some people feel more in control of what is happening to them. You can do this by becoming involved in your illness. Understanding testicular cancer 53 Try to eat as well as you can. Eat little and often using lots of different types of foods with plenty of fresh fruit and vegetables. Think about joining a support group. These groups allow you to talk through your feelings with others who have been diagnosed and treated for cancer. Men Against Cancer (MAC) is the support group for men with prostate and testicular cancer. It provides patients and relatives with information, advice and emotional support at time of diagnosis, throughout treatment and afterwards. See page 72 for more information. Join a relaxation class or listen to relaxation tapes. Take some regular exercise. Take it easy at first, building up the amount you do, as you feel stronger. Some people find it helpful to talk to a counsellor or a specialist in psychological medicine. If the idea of changing your diet or taking exercise does not appeal to you, don t do it. Just do whatever suits you. Some people find pleasure in keeping to their normal routine as much as possible. Others prefer to take a holiday or spend more time on a hobby.

29 54 Understanding testicular cancer Understanding testicular cancer 55 Who else can help? There are many people ready to help you and your family throughout treatment and afterwards. Medical social worker Oncology liaison nurses Cancer nurse co-ordinators Psycho-oncology services Community welfare officer and community health services Support groups Helpline nurses. The medical social worker in your hospital can help in many ways. He or she provides support and counselling to the patients and their families and can provide advice on benefits, entitlements and services available when you go home. Some of the major cancer treatment hospitals have oncology liaison nurses and/or cancer nurse co-ordinators. These specially trained nurses provide support to patients and their families from the time of diagnosis and throughout treatment. These people along with other members of your medical team work together to meet your needs. In some larger hospitals there are special units that provide psycho-oncology services. This means that psychological care and support is given to patients with cancer during diagnosis, treatment and recovery by a team of experts. Usually the team consists of psychiatrists, clinical psychologists, nurses and medical and surgical doctors working closely together. available from your local health centre. These centres have family doctors, public health nurses (who can visit you at home), welfare officers and home-help organisers. If you live in an area which is remote or far from the hospital where you have been treated, your community welfare officer can also help with practical issues such as financial worries, etc. All these people in community health services can provide advice and support. You can get more information on the services available either from the social worker in the hospital before you go home or at your local health centre. Joining a support group can put you in touch with people who have been in a similar situation. They can give you practical advice about living with cancer. You may find it easier to share your thoughts and feelings with someone who has a similar experience than with anyone else. There are a range of support groups that will support you and your family at time of diagnosis, throughout treatment and afterwards. A list of support groups is given at the back of this booklet. Often you might need practical advice about your financial matters, e.g. getting a mortgage or travel insurance. The Irish Cancer Society Helpline nurses will be happy to discuss any concerns you or your family may have, at any stage of your illness. They can give you more information about any of the services outlined above and can also let you know about support services in your area. When you go home there are various community health services

30 56 Understanding testicular cancer Life after treatment Most men are delighted when the treatment ends and they are told that they no longer have testicular cancer. However, It can take at they are often surprised at how long it takes to regain their least a year for strength and to get back to normality. It is important to you to get over know that it can take at least a year for you to get over the the effects of effects of treatment. You may still feel tired and lacking in treatment. energy for many months after treatment has ended. You might not feel ready to lead as active a life as you did before treatment. It is better not to fight these feelings but to allow your body the time it needs to recover. You may have problems to solve or decisions to make which you deferred because of treatment. These issues may include changing jobs, getting back to work or study and whether you can have children or not. Health-wise, there are things that you can do which may speed up the process of recovery and help you to have a good quality of life in the future. Anxiety You may find that you miss the regular contact with the people who looked after during your regular visits to hospital. You may worry about the cancer coming back. For some men, it is only when the treatment is over do they sit back and think about all they have been through. This anxiety can be overwhelming at times. It may help to talk about your feelings. Try talking to your partner or a close friend. If you find this difficult, someone who has had the same illness may be able to help. Men Against Cancer (MAC) is the support group for men Understanding testicular cancer 57 with prostate and testicular cancer. It provides patients and relatives with information, advice and emotional support. Tell your doctor or nurse if you have a problem that is worrying you. If you are still anxious and upset, ask to speak to a medical social worker or counsellor about your feelings, it may help. Lack of energy You may continue to feel quite tired after treatment ends. This is very common as it will be at least a year before your body gets over the effects of treatment. Do not be in a rush to get back to your normal routine with work. Just do as much as you feel comfortable with. If you are trying to study you may find it difficult to concentrate. You may find it helpful to limit your studies until you feel stronger.... you may find it helpful to talk openly to your partner or a friend about these feelings. Ask for help around the house or at work. Try to build rest periods into your day. Do not allow yourself to get overtired. If you are going somewhere special have a rest before you go out. Save your energy for doing the things you especially enjoy. As time goes on your energy levels should improve. Fertility It is not easy to come to terms with the prospect of infertility. It can take a while to sort out your emotions and be able to talk about them. When you are ready, you may find it helpful to talk openly to your partner or a friend about these feelings. If they can understand how you feel it is often easier for them to offer help and support. Doctors cannot always tell whether the infertility is going to be temporary or permanent.

31 58 Understanding testicular cancer Once you are over the effects of treatment it is possible to have tests done to show whether you are fertile or not. These tests are quite straightforward. Your doctor can organise them for you. If you can have children you may worry that the cancer may be passed on to them. You may also be worried that they will be malformed as a result of your treatment. It is important to know that these fears are unfounded. Many men go on to father healthy babies after treatment for testicular cancer. Healthy lifestyle In rare cases, treatment for testicular cancer may cause long-term damage to the lungs and other organs. There is also a slight risk of developing a second cancer because of the treatment. Living a healthy lifestyle may help to lessen the chances of you developing health problems in the future. Some organs in the body, such as the lungs, are more sensitive to the damaging effects of tobacco smoke if they have been exposed to radiation or certain chemotherapy drugs. There is help available if you smoke and would like to stop smoking. The Irish Cancer Society Quitline offers support and assistance for smokers. You can talk to a specially trained stop-smoking counsellor who will help you to prepare a plan and support you at during this time. Call the Quitline (for the cost of a local call from anywhere in the country) Monday-Friday 9.00 a.m p.m. for more information. Some hospitals also have stop smoking clinics. Ask your doctor or nurse if there is one in your hospital. If you are out in the sun or going on a sun holiday after your treatment you must protect your skin. Keep skin that has been exposed to radiation covered up and wear a high factor protective Understanding testicular cancer 59 suncream at all times. The suns rays that cause sunburn can be extra harmful to skin that has been exposed to radiation. You may be more at risk of getting skin cancer. Chemotherapy can also make your skin more sensitive to the damaging effects of the sun, especially if you have had treatment recently. You may get sunburn more easily. Do not sunbathe for long periods. If you are out in the sun keep your skin covered up. Protect your skin by wearing a high factor suncream at all times. Try to eat a variety of foods. Eating plenty of fruit and vegetables and cutting out sweets and cakes may help to bring your weight back to normal if you have put on weight during treatment. Doing some regular exercise will help improve your energy levels. Take it easy at first, increasing the amount you do, as you feel stronger. Follow-up These visits are most important, as they will allow your doctor to check for signs of recurrence and to follow up on any ongoing sideeffects that you may have. Even if the cancer recurs it can still be treated but the chances of a complete cure are much higher if the cancer is detected early. Your doctor will also want to check for signs of new side-effects that may develop after you have finished treatment. It is better to be aware of these as early as possible so that effective treatment can be given. If you are between check-ups or you have a symptom or problem that worries you, let your doctor know by making an appointment to see him or her as soon as possible.

32 Understanding testicular cancer Support resources Health cover 61 Health cover falls into two categories cover for medical card holders and cover for all other categories. Details of what these entail are given in the following pages. At the end of this section there are also some useful telephone numbers and addresses for further help. Hospital cover At present everyone is entitled to hospital inpatient services in a public ward in all public hospitals. There is a 60 a night charge up to a limit of 600 in 1 year. These charges do not apply to medical card holders. Higher rates apply for semi-private or private care. Outpatient cover If you go to the outpatients or A&E unit of a public hospital, without being referred there by a GP, you may be charged 60. There is no charge if you are referred by a GP. This charge does not apply if you have a medical card or are admitted to hospital as a result of attending the A&E unit first. Medical card A medical card usually allows you, your spouse and any child under 16 to free GP services, prescribed drugs and medicines, inpatient public hospital services, and outpatient services and medical appliances. Every person aged 70 or over has a right to a medical card and no means test is required. It covers the applicant only and not their dependents.