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A practical guide to understanding cancer ‘My Macmillan nurse, Julie, was fantastic. She was there from when I was diagnosed. I could always go to her with any problems I had.’ Herbie, diagnosed with breast cancer in 2012 About this booklet 1 About this booklet This booklet is about breast cancer in men. We hope it answers your questions and helps you deal with some of the feelings you may have. Breast cancer in men is rare. About 350 men in the UK are diagnosed with breast cancer each year. We can’t advise you about the best treatment for you. This information can only come from your doctor, who knows your full medical history. There is a page for you to fill in any questions for your doctor or nurse (page 125). If you’d like to discuss this information, call the Macmillan Support Line free on 0808 808 00 00, Monday–Friday, 9am–8pm. If you’re hard of hearing, you can use textphone 0808 808 0121, or Text Relay. For non-English speakers, interpreters are available. Or you can visit our website at macmillan.org.uk Men with breast cancer can share their experiences and get support online. There are some useful addresses and websites at the end of this booklet (pages 121–124). 2 Understanding breast cancer in men We have included some comments from men affected by breast cancer, which you might find helpful. Quotes are from the website healthtalkonline.org and the Macmillan online community (macmillan.org.uk/community). Some names may have been changed. Some quotes are from Herbie, who is on the cover of this booklet. He has chosen to share his story with us. If you find this booklet helpful, you could pass it on to your family and friends. They may want information to help them support you. We also have a website called The Source which has comments and advice from people who have had cancer or been affected in some way (source.macmillan.org.uk). Family and friends can find valuable information to help them know what to say or do when someone they care about has cancer. Contents 3 Contents The breasts and breast cancer in men 5 Diagnosing breast cancer in men 19 Treating breast cancer in men 37 After your treatment 83 Your feelings and relationships 95 Work and financial support 107 Further information 115 The breasts and breast cancer in men What is cancer? 6 Men’s breasts 8 The lymphatic system 11 Symptoms of breast cancer in men 12 Risk factors for breast cancer in men 14 6 Understanding breast cancer in men What is cancer? Cancer starts in cells in our body. Cells are tiny building blocks that make up the organs and tissues of our bodies. They divide to make new cells in a controlled way. This is how our bodies grow, heal and repair. Cells receive signals from the body telling them when to divide and grow and when to stop growing. When a cell is no longer needed or can’t be repaired, it gets a signal to stop working and die. Cancer develops when the normal workings of a cell go wrong and the cell becomes abnormal. The abnormal cell keeps dividing making more and more abnormal cells. These eventually form a lump (tumour). Not all lumps are cancerous. Doctors can tell if a lump is cancerous by removing a small sample of tissue or cells from it. This is called a biopsy. The doctors examine the sample under a microscope to look for cancer cells. Normal cells Cells forming a tumour The breasts and breast cancer in men 7 A lump that is not cancerous (benign) may grow but cannot spread to anywhere else in the body. It usually only causes problems if it puts pressure on nearby organs. A lump that is cancer (malignant) can grow into nearby tissue. Sometimes, cancer cells spread from where the cancer first started (the primary site) to other parts of the body. They can travel through the blood or lymphatic system (see page 11). When the cells reach another part of the body, they may begin to grow and form another tumour. This is called a secondary cancer or a metastasis. 8 Understanding breast cancer in men Men’s breasts Many people don’t know that men can get breast cancer because they aren’t aware that men have breasts. But men have a small amount of breast tissue behind their nipples, where breast cancer can develop. Cross-section of the male breast Muscle Rib Breast tissue Nipple The breasts and breast cancer in men 9 Until puberty, breast tissue in boys and girls is the same. Both have a small amount of breast tissue behind the nipple and areola (the darker area of skin around the nipple). This is made up of a few tiny tubes (ducts) surrounded by fatty tissue, connective tissue, blood vessels and lymphatic vessels. At puberty, both girls and boys begin to produce the hormone oestrogen. In girls, this leads to breast tissue developing. In some boys oestrogen also causes breast swelling but this is usually temporary and their breast tissue doesn’t develop. At puberty, boys begin to make more of the hormone testosterone which acts against the effects of oestrogen. Sometimes as men get older, or as a side effect of certain drugs, the balance between these hormones changes. This can cause breast tissue to swell, which is called gynaecomastia. It is not linked with breast cancer, but if you are worried about any changes you can talk to your GP. The breasts and breast cancer in men 11 The lymphatic system In both men and women, breast tissue is connected to the lymphatic system through a network of lymphatic vessels and lymph nodes. The lymphatic system helps to protect us from infection and disease. Lymph nodes are found in the armpit, beside the breastbone and behind the collarbones. Sometimes, cancer can spread through the lymphatic system. If the cancer cells spread outside the breast tissue, they are most likely to go to lymph nodes in the armpit. Lymph nodes near the breast Lymph nodes behind the collarbone Lymph nodes in the armpit Lymph vessels Lymph nodes near the breastbone 12 Understanding breast cancer in men Symptoms of breast cancer in men In most men, the first symptom they usually notice is a painless lump under the nipple or areola. Other symptoms may include: •• a nipple that is turned in (inverted) •• swelling of the breast tissue •• a rash around the nipple •• discharge or bleeding from the nipple •• a swelling or lump in the armpit •• an ulcer on the skin of the breast. You'll know how your chest area normally looks and feels. If you notice any change, you should see your GP straight away. If there is breast cancer, treatment will be more effective if it is diagnosed early. ‘I was in the shower when I found a lump and I thought it was a boil or a cyst. It was on my right breast near the nipple and it was the size of a pea. Two weeks later it was painful so I went to the doctor.’ Herbie 14 Understanding breast cancer in men Risk factors for breast cancer in men The exact cause of breast cancer is unknown. But certain things, called risk factors, can increase a man’s chances of developing it. However, because breast cancer in men is rare, most men who have these risk factors will never develop breast cancer. Age The risk of breast cancer in men increases with age. It’s most common in men over 60 years old. Breast cancer in young men is rare. Family history of breast cancer Men who have close relatives with breast cancer may have an increased risk of developing breast cancer. Close relatives, sometimes called your first degree relatives, are parents, children, sisters and brothers. About 1 in 5 men (20%) with breast cancer have a close relative who has also had breast cancer. The increased risk may be due to inherited faulty genes. Our genes store the biological information we inherit from our parents. The genes most commonly linked to an increased risk of breast cancer in families are BRCA1 and BRCA2. Men in families with the BRCA2 gene are more likely to develop breast cancer than men in BRCA1 families. It’s thought that the BRCA2 gene may cause up to 1 in 10 (10%) of breast cancers in men. The breasts and breast cancer in men 15 We have a booklet called Cancer genetics – how cancer sometimes runs in families, which has more information about genetic risk. If you’re concerned about breast cancer in your family, you can ask your GP or breast specialist to refer you to a family history clinic or a genetics clinic. Online risk assessment We have an interactive online tool called OPERA (Online Personal Education and Risk Assessment), which gives you personalised information about inherited breast cancer risk. OPERA is based on guidance from the National Institute for Health and Care Excellence (NICE) on familial breast and ovarian cancer. It asks you a number of questions about your personal and family history of breast and ovarian cancer. It then gives you a personal assessment based on your answers. ‘I was diagnosed with breast cancer and had my breast cancer removed about two or three years ago. I wasn’t totally surprised – my mother had it and died from it. And my sister was diagnosed with it a year ago, so there seems to be some kind of genetic link.’ Stephen 16 Understanding breast cancer in men You can access OPERA at macmillan.org.uk/opera If anyone else in your family is worried about their risk, they may also want to use OPERA. The program also gives details of websites, helpful information and further support. OPERA isn’t intended to replace professional genetic counselling services. If you’re concerned about your genetic risk, you should still consult your GP. You may want to take a copy of your personal assessment with you when you see them. Klinefelter syndrome This is a rare syndrome which affects only men. Normally, males are born with one X chromosome and one Y chromosome (XY), while females have two X chromosomes (XX). Men with Klinefelter syndrome have one Y chromosome and two or more X chromosomes (XXY or XXXY). Symptoms of Klinefelter syndrome may include being taller than average, having increased breast tissue (gynaecomastia), lower levels of testosterone, smaller testicles and infertility. Men with Klinefelter syndrome have a higher risk of breast cancer. For most men, the lifetime risk of developing breast cancer is about 1 in 1000, but for men with Klinefelter syndrome it’s closer to 1 in 25. Radiation Being exposed to radiation may increase a man’s risk of breast cancer. Men who have had repeated doses of radiotherapy to their chest area at a young age may also be at increased risk. The breasts and breast cancer in men 17 High oestrogen levels Men may be at risk of developing breast cancer if they have higher levels of oestrogen than normal. This can be caused by long-term damage to the liver, such as liver cirrhosis. This can be caused by heavy drinking over a long period of time. Oestrogen levels can also be affected by being very overweight. Increased levels of oestrogen can affect the growth of breast cancer cells. Testicular effects Conditions that can affect or damage the testicles may also increase the risk of breast cancer. These include: •• having undescended testicles •• having surgery to remove one or both testicles •• having mumps as an adult. Some occupations Men who work in hot environments, such as blast furnaces, steel works and rolling mills, may have a slightly increased risk. This is probably related to heat damage to the testicles. Some studies have also linked long-term exposure to petrol and exhaust fumes with breast cancer in men. Diagnosing breast cancer in men How breast cancer is diagnosed 20 Further tests 25 Types of breast cancer 28 Staging, grading and receptors for breast cancer 31 20 Understanding breast cancer in men How breast cancer is diagnosed You will usually start by seeing your GP, who will examine you and refer you to a breast clinic to see a specialist. You should receive an appointment for the breast clinic within two weeks. At the breast clinic At a breast clinic, you’ll see a specialist breast doctor. You may also see a specialist breast nurse or advanced nurse practitioner. They usually ask you if you’ve had any other breast problems, or if anyone in your family has had breast cancer. The doctor will examine your chest area and the lymph nodes in your armpits and around your neck. After this, they’ll explain which tests you need. Breast ultrasound An ultrasound uses sound waves to build up a picture of the breast tissue. It can show if a lump is solid (made of cells) or a fluid-filled cyst. It can also show whether a solid lump is regular or irregular in shape. To have an ultrasound, you’ll be asked to take off your top and lie down on a couch with your arm above your head. The person doing the scan puts gel on your breast tissue and moves a small hand-held device over the area. A picture of the breast tissue shows up on a screen. An ultrasound only takes a few minutes and is painless. Diagnosing breast cancer in men 21 Ultrasound of the lymph nodes You may have an ultrasound of the lymph nodes in the armpit. If any of the nodes feel swollen or look abnormal on the ultrasound, the doctor will take a biopsy or needle aspirate (see below). Mammogram A mammogram is a low-dose x-ray of the breast tissue. To have a mammogram, you’ll need to take your top off. The radiographer positions you so that your chest is against the x-ray machine. Your breast tissue is then gently but firmly compressed with a clear, flat plastic plate. The breast tissue needs to be squashed to keep it still and to get a clear picture. You may find this uncomfortable or painful for a short time. You’ll need to stay still for a few seconds while the picture is taken. Breast biopsy This is when the doctor removes a small piece of tissue or cells from the lump or abnormal area. A pathologist (a doctor who specialises in analysing cells) will then examine the tissue or cells under a microscope to look for cancer cells. There are different ways of taking a biopsy. Your doctor or nurse will explain the type you will have. For a few days after a biopsy your breast may feel sore and bruised. Taking painkillers will help with this. Any bruising should go away in a couple of weeks. Needle (core) biopsy This is the most commonly used biopsy. The doctor uses a needle to take a small piece of tissue from the lump or abnormal area. Before taking the biopsy, they inject some local anaesthetic into the area to numb it. You may feel a little pain or pressure for a short time during the biopsy. Several samples can be taken at the same time. 22 Understanding breast cancer in men Fine needle aspiration (FNA) This test may be used instead of a core biopsy to take samples from lymph nodes (see page 11). It’s a quick and simple procedure carried out in the x-ray or ultrasound department. The doctor uses a very fine needle to remove a sample of cells into a syringe. Excision biopsy Occasionally, the surgeon makes a cut in the skin over the tissue and removes the lump or abnormal area. This is usually done under a general anaesthetic. Usually you have stitches that dissolve and don’t need to be removed. ‘I was feeling the lump every morning when I was in the shower but it never occurred to me that I had cancer. It was only when it hurt that I realised it might be something a bit more serious. But I still didn’t think it was cancer until I saw the GP.’ Mike Diagnosing breast cancer in men 23 Waiting for test results Waiting for test results can be a difficult time. It may take from a few days to a couple of weeks for the results of your tests to be ready. You may find it helpful to talk with your partner, your family or a close friend. Your specialist nurse or one of the organisations listed on pages 121–124 can provide support. You can also talk things over with us on 0808 808 00 00. Diagnosing breast cancer in men 25 Further tests If the biopsy results show there are breast cancer cells, you may need more tests before you can start your treatment. You may have blood taken to check your general health and to see how well your kidneys and liver are working. You may have an x-ray of your chest to check your lungs and heart. Some men may have other tests to check if the cancer has spread to other parts of the body. Bone scan This test shows up abnormal areas of bone. You have a small amount of a mildly radioactive substance injected into a vein. You wait for 2–3 hours after the injection before you have the scan, which may take an hour. Abnormal bone absorbs more radioactivity than normal bone and shows up on the scan pictures. CT (computerised tomography) scan A CT scan takes a series of x-rays, which builds up a three‑dimensional picture of the inside of the body. The scan takes 10–30 minutes and is painless. It uses a small amount of radiation, which is very unlikely to harm you and will not harm anyone you come into contact with. You will be asked not to eat or drink for at least four hours before the scan. 26 Understanding breast cancer in men You may be given a drink or injection of a dye (called a contrast medium), which allows particular areas to be seen more clearly. This may make you feel hot all over for a few minutes. It’s important to let your doctor know if you are allergic to iodine or have asthma, because you could have a reaction to the injection. You’ll probably be able to go home as soon as the scan is over. MRI (magnetic resonance imaging) scan This test uses magnetism to build up a detailed picture of areas of your body. The scanner is a powerful magnet so you may be asked to complete and sign a checklist to make sure it’s safe for you. The checklist asks about any metal implants you may have, for example such as a pacemaker, surgical clips or bone pins. You should also tell your doctor if you’ve ever worked with metal or in the metal industry as very tiny fragments of metal can sometimes lodge in the body. If you do have any metal in your body, it’s likely that you won’t be able to have an MRI scan. In this situation, another type of scan can be used. Before the scan, you’ll be asked to remove any metal belongings including jewellery. You will have an injection of dye into a vein in the arm, which doesn’t usually cause discomfort. This is called a contrast medium and can help the images from the scan to show up more clearly. During the test, you’ll lie very still on a couch inside a long cylinder (tube) for about 30 minutes. It’s painless but can be slightly uncomfortable, and some people feel a bit claustrophobic. It’s also noisy, but you’ll be given earplugs or headphones. You can hear, and speak to, the person operating the scanner. Diagnosing breast cancer in men 27 Liver ultrasound This scan is done to check the liver. The person doing the scan spreads a gel on to your tummy and moves a small handheld device, which produces sound waves, over the liver area. The sound waves are converted into a picture by a computer. If you need support If you are diagnosed with cancer, it can come as a shock, even if your doctors have prepared you for this possibility. There’s lots of support available. You can call the Macmillan Support Line free on 0808 808 00 00 (Mon–Fri, 9am–8pm). Or you can visit macmillan.org.uk, or contact one of the organisations listed on pages 121–124. 28 Understanding breast cancer in men Types of breast cancer There are different types of breast cancer. Knowing the type of cancer you have helps the doctors plan your individual treatment. Ductal carcinoma in situ (DCIS) This is the earliest form of breast cancer. In DCIS, cancer cells are in the ducts of the breast, but not in any other breast tissue. A pathologist will look at a sample of the cells under a microscope to see what grade they are (see page 34). High-grade DCIS may become invasive (spread outside the ducts) and is treated as a breast cancer. Other grades (intermediate and low) are different and doctors are unsure if these will become invasive, so will still treat them. DCIS is much less common in men than in women; less than 1 in 10 (10%) of breast cancers in men are DCIS. We have more information about DCIS, which we can send you. Invasive breast cancer Most breast cancers in men are invasive. This means the cancer cells have spread outside the lining of the ducts and into surrounding breast tissue. There are different types of invasive breast cancer: •• Invasive ductal breast cancer – Most invasive breast cancers in men are this type (80–90%). •• Invasive lobular breast cancer – This cancer is rare in men because there are few, if any, lobules in men’s breasts. Diagnosing breast cancer in men 29 Other rare types of breast cancer include: •• inflammatory breast cancer •• medullary breast cancer •• tubular breast cancer •• malignant phyllodes tumour. For more information about any of these types of breast cancer, call the Macmillan Support Line on 0808 808 00 00. ‘I still didn’t think it was cancer. I knew men could get breast cancer, but it never occurred to me for one moment that I’d got it.’ Mike ‘When the doctor told me I had breast cancer, I said: ‘I can’t have breast cancer. I’m a man.’ It took a bit of explaining to the kids.’ Herbie Diagnosing breast cancer in men 31 Staging, grading and receptors for breast cancer Your breast specialist needs certain information about the cancer to help plan the best treatment for you. This includes the stage of the cancer, its grade and whether it has receptors for hormones, proteins or both. Your specialist doctor and nurse will talk this over with you. Staging The stage of a cancer describes its size and if it has spread from where it started. This information affects the decisions you and your doctor make about your treatment. They may not know the exact stage of the cancer until after surgery. TNM staging The TNM staging system gives the complete stage of the cancer: •• T describes the size of the tumour. •• N describes whether the cancer has spread to the lymph nodes and which nodes are involved. For example, N0 is no lymph nodes affected while N1 means there are cancer cells in the lymph nodes. •• M describes if the cancer has spread to another part of the body. For example, M0 means the cancer has not spread (metastasised) to other parts of the body. 32 Understanding breast cancer in men The number stage Breast cancer can also be divided into number stages. Stage 0 – This describes non-invasive breast cancers. Ductal carcinoma in situ (DCIS) is sometimes described as stage 0. The following four stages are known as invasive breast cancer: Stage 1 is divided into two stages: •• Stage 1A – The cancer (lump) is 2cm or smaller and has not spread outside the breast tissue. •• Stage 1B – The cancer is not found in the breast tissue (or is less than 2cm) and there are a few cancer cells in the lymph nodes under the arm. Stage 2 is divided into two stages: •• Stage 2A – The cancer is not found in the breast tissue or is smaller than 2cm and has spread to lymph nodes OR is bigger than 2cm (but under 5cm) and hasn’t spread to the lymph nodes. •• Stage 2B – The cancer is bigger than 2cm but not bigger than 5cm and has spread to the lymph nodes in the armpit OR is bigger than 5cm but has not spread to the lymph nodes. Stage 1 and 2 breast cancer is often called early breast cancer. Diagnosing breast cancer in men 33 Stage 3 is divided into three stages: •• Stage 3A The cancer is not found in the breast or is any size and has spread to 4–9 lymph nodes in the armpit OR the cancer is bigger than 5cm and has spread to a few lymph nodes. •• Stage 3B – The cancer has spread to tissue near the breast and may be attached to muscle or skin (causing ulcers). There are usually cancer cells in the lymph nodes. •• Stage 3C – The cancer has spread to 10 or more lymph nodes in the armpit, below the breastbone, near the neck or under the collarbone. Sometimes stage 3 breast cancer is called locally advanced breast cancer. Cancer that has spread to the skin may be inflammatory breast cancer. Stage 4 The cancer has spread to other parts of the body such as the bones, liver or lungs. This is called secondary or metastatic breast cancer. 34 Understanding breast cancer in men Grading The grade of a cancer gives an idea of how quickly it might grow. The grade is based on what the cancer cells look like under the microscope compared with normal cells. Knowing the grade helps your doctor to decide if you need further treatment after surgery. Grade 1 or low-grade The cancer cells look similar to normal cells (are well‑differentiated) and usually grow slowly. The cancer cells are less likely to spread. Grade 2 or moderate- or intermediate-grade The cancer cells look more abnormal and grow slightly faster than grade 1 cells. Grade 3 or high-grade The cancer cells look very different from normal cells (are poorly differentiated) and may grow more quickly than grade 1 or 2 cells. Receptors Some breast cancer cells have receptors that hormones or proteins can attach to. This can stimulate the cancer cells to grow. A pathologist will do tests on the cancer cells to find out if receptors are present and what type they are. This information helps you and your doctor to decide on the most effective treatment for you. Diagnosing breast cancer in men 35 Hormone receptors Hormones exist naturally in the body. They help to control how cells grow and what they do in the body. All men have small amounts of the hormones oestrogen and progesterone in their bodies. Hormones, particularly oestrogen, can encourage some breast cancer cells to grow. About 20% of oestrogen is made by the testicles. The remaining 80% is made from male sex hormones (androgens). Breast cancers with receptors for the hormone oestrogen are called oestrogen receptor-positive or ER-positive breast cancer. The term ER is used because the American spelling of oestrogen is estrogen. Some hospitals also check if cells are progesterone receptor (PR) positive. About 90% of breast cancers in men are ER-positive. These cancers respond well to hormonal treatments (see pages 70–73). Oestrogen receptor-negative or ER-negative breast cancer doesn’t have oestrogen receptors. Protein receptors Some breast cancers have receptors for the protein HER2 (human epidermal growth factor 2), which can encourage breast cancer cells to grow. These cancers are called HER2-positive breast cancers. They may be treated with a drug called trastuzumab (Herceptin®) (see pages 75–77). Cancers that have no hormone (oestrogen or progesterone) or protein receptors are called triple-negative breast cancer. Treating breast cancer in men Treatment overview 38 How treatment is planned 40 Surgery43 Radiotherapy 55 Chemotherapy 61 Hormonal therapy 70 Targeted therapy 75 Research – clinical trials 79 38 Understanding breast cancer in men Treatment overview Treatments for men with breast cancer are similar to those used for breast cancer in women. The treatment you have will depend on the stage of breast cancer that you have. Your doctor and specialist nurse will explain the treatments they think are best for your situation. Early and locally advanced breast cancer For most men, the main treatment for early breast cancer is surgery to remove it. As most men have only a small amount of breast tissue, the operation usually involves taking away all of the breast tissue and the nipple on the affected side. Rarely, only the lump and some surrounding tissue is removed. Men who have larger cancers may have chemotherapy or hormonal therapy before surgery to shrink the tumour. This is known as neo-adjuvant therapy. Many men will then have other treatments after surgery (adjuvant therapy) to reduce the risk of the cancer coming back (recurring). These treatments may include radiotherapy, chemotherapy, hormonal therapy or targeted therapy with trastuzumab (Herceptin®). You may have radiotherapy to the chest wall. This is to get rid of any cancer cells that may have been left behind after surgery. Some men may also have radiotherapy to the lymph nodes in the armpit or the lower part of the neck. Treating breast cancer in men 39 If the cancer is large, has spread to the lymph nodes or is high‑grade (see page 34), you may be given chemotherapy after your operation. Men who have triple-negative breast cancer are also usually treated with chemotherapy. If the cancer is ER-positive, you’ll be given hormonal treatment for a number of years. This will start after chemotherapy if you are having it. If you have HER2-positive breast cancer, you may have treatment with trastuzumab (Herceptin) and chemotherapy. Secondary breast cancer If the cancer has spread beyond the breast and lymph nodes in the armpit to another part of the body, it is called secondary breast cancer. The most common places for breast cancer to spread to are the bone, liver, lungs or occasionally the brain. Treatment for secondary breast cancer is different for each person. It will depend on the type of breast cancer and where it has spread to. The main treatments are hormonal therapy, chemotherapy and targeted therapy, although surgery and radiotherapy may be helpful in some situations. The aim of treatment for secondary breast cancer is usually to help control it, reduce the symptoms and improve your quality of life. Before you have any treatment, your cancer specialist and breast care nurse will talk it over with you and answer your questions. 40 Understanding breast cancer in men How treatment is planned A team of specialists will meet to discuss and decide on the best treatment for you. This multidisciplinary team (MDT) will include: •• a surgeon who specialises in breast surgery •• oncologists (cancer specialists) who specialise in chemotherapy, radiotherapy, hormonal therapy and targeted therapy •• a specialist breast care nurse who gives information and support •• a radiologist who analyses x-rays and scans •• a pathologist who advises on the type and extent of the cancer. It may also include other healthcare professionals, such as a physiotherapist, a research nurse, psychologist, plastic surgeon, social worker or counsellor. The MDT will look at a number of factors to help decide which treatments are likely to work best for you. These include: •• the stage and grade of the cancer •• whether the cancer cells have hormone receptors or HER2 receptors •• your general health. After the MDT meeting, your cancer specialist or nurse will talk to you about the best treatment for your situation. Treating breast cancer in men 41 Consent Before you have any treatment your doctor will explain its aims. They will ask you to sign a form saying that you give your permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent. Before you are asked to sign the form, you should be given full information about: •• the type and extent of the treatment •• its advantages and disadvantages •• any significant risks or side effects •• any other treatments that may be available. If you don’t understand what you’ve been told, let the staff know straight away, so they can explain again. Some cancer treatments are complex, so it’s not unusual to need repeated explanations. It’s a good idea to have a relative or friend with you when the treatment is explained, to help you remember the discussion. You may also find it useful to write a list of questions before your appointment. You can always ask for more time if you feel that you can’t make a decision when your treatment is first explained to you. You are also free to choose not to have the treatment. The staff can explain what may happen if you don’t have it. It’s essential to tell a doctor or the nurse in charge, so they can record your decision in your medical notes. You don’t have to give a reason for not wanting treatment, but it can help to let the staff know your concerns so they can give you the best advice. 42 Understanding breast cancer in men Second opinion Your multidisciplinary team (MDT) uses national treatment guidelines to decide the most suitable treatment for you. Even so, you may want another medical opinion. If you feel it will be helpful, you can ask either your specialist or GP to refer you to another specialist for a second opinion. Getting a second opinion may delay the start of your treatment, so you and your doctor need to be confident that it will give you useful information. If you do go for a second opinion, it may be a good idea to take a relative or friend with you, and have a list of questions ready, so that you can make sure your concerns are covered during the discussion. Treating breast cancer in men 43 Surgery Most men only have a small amount of breast tissue, so the most common operation involves taking away all of the breast tissue and the nipple. This is called a mastectomy. You will usually have some or all of the lymph nodes removed from the armpit during this operation. Occasionally the surgeon may be able to remove only the area of the cancer with some surrounding normal-looking tissue. This operation is called a wide local excision and for some men it may mean that they keep their nipple. ‘I had a mastectomy and my lymph nodes tested. I didn’t have a reconstruction. I was left with a six-inch scar across my chest.’ Herbie 44 Understanding breast cancer in men After this operation, the pathologist examines the tissue that’s been removed to see if there is an area of normal cells around the cancer. This is called a clear margin. If there are still cancer cells at the edge of the removed breast tissue, you’ll need to have a mastectomy. Before your operation, your surgeon will talk to you about the type of operation that is recommended for you. ‘I have a scar across my chest but I don’t worry about it. My chest hair has grown over it so I’m not very self conscious.’ Herbie 46 Understanding breast cancer in men Surgery to the lymph nodes Your surgeon may remove some or all of the lymph nodes in your armpit. There are different types of lymph node surgery. Sentinel lymph node biopsy (SLNB) This may be done if you have a small cancer and the ultrasound of your armpit is normal. SLNB isn’t suitable for everyone – your surgeon will explain if it’s an option for you. A sentinel lymph node biopsy is a way of checking the smallest possible number of lymph nodes (usually 1–3) in the armpit to see if they contain cancer cells. The sentinel nodes are the first ones that lymph fluid drains to from the breast, so they are the most likely to contain any cancer cells. If the sentinel nodes don’t contain cancer cells, you won’t need surgery to remove more lymph nodes. Removing only the sentinel lymph nodes lessens the risk of side effects that can sometimes occur after lymph node surgery. These include swelling of the arm known as lymphoedema and stiffness of the arm (see page 53). How an SLNB is done The doctor or a technician will inject a tiny amount of radioactive liquid, which is harmless, into your breast, usually around the nipple. You have this done on the day of surgery or sometimes the day before. During the operation, the surgeon may inject a blue dye into your breast, which stains the lymph nodes blue. The sentinel lymph nodes absorb the radioactivity or become blue first. Treating breast cancer in men 47 The surgeon uses a small handheld instrument to find the lymph nodes that have picked up the radioactivity. They only remove the blue or radioactive nodes (sentinel nodes). These are tested to see if they contain cancer cells. If any of the nodes contain cancer cells, you may have further surgery to remove all the lymph nodes (axillary lymph node dissection). Some men may have radiotherapy to the lymph nodes instead of surgery. Removing all the lymph nodes In some cases, the surgeon will want to remove all the lymph nodes in the armpit. This is called an axillary lymph node dissection (ALND) or clearance. It removes any nodes that contain cancer cells. You usually won’t need radiotherapy to the area afterwards. An ALND is usually done when: •• the ultrasound of the lymph nodes is abnormal, and •• a biopsy of the lymph nodes is positive, or •• the sentinel node biopsy shows there are cancer cells in the nodes. There’s an increased risk of developing swelling of the arm called lymphoedema after an ALND. You can read more about lymphoedema and taking care of your arm on pages 85–86. 48 Understanding breast cancer in men Before your operation Before your operation, you may be seen at a pre-assessment clinic. This gives you a chance to ask questions and talk over any concerns about the operation. You may have tests to check your general health. These can include blood tests, a chest x-ray or a recording of your heart (ECG). Your surgeon or breast care nurse will talk to you about how your chest will look after your surgery. They may show you photographs of other men who have had breast surgery or put you in touch with someone who has been through it. Or you can contact a support group or Breast Cancer Care (see page 121). You will usually come into hospital on the day of your operation. You’ll meet the doctor who gives you the anaesthetic (anaesthetist). The nurses may give you elastic stockings (TED stockings) to wear during and after the operation to help prevent blood clots. After your operation You’ll be encouraged to start moving around as soon as possible after your operation. Your wound You’ll have a dressing covering your wound, which may be left undisturbed for the first couple of days. The nurses will let you know how to look after it before you go home. How long your wound takes to heal depends on the operation you had. If you only had a small area of tissue removed, it will usually heal quickly. If you don’t have stitches that dissolve, you will probably have your stitches removed about 7–10 days after your operation. Treating breast cancer in men 49 Wound infection This can be a complication of surgery. Signs of infection can include warmth, redness, swelling around the wound or discharge coming from it. You may also feel unwell with a fever. Tell your nurse or doctor if you get any of these symptoms, even after you go home. Pain You’ll probably have some pain around the wound and in your armpit if you had lymph nodes removed. This may last a few days. The nurses will give you painkillers to take regularly until it settles down. After a mastectomy, you may need to take them for a week or two. Let your doctor or nurse know if the painkillers aren’t helping. They can prescribe stronger ones for you to try. Drains You may have a long, thin plastic drainage tube coming from your wound. This is attached to a bottle that fluid from the wound drains into. It’s usually left in for 24 hours or until it stops draining, which may take a few days. You can go home with the drain. A district nurse or practice nurse may check it and remove it when you’re at home. Or you may come back to have it removed at the hospital. Fluid collecting around the wound (seroma) Fluid can build up in the area around the wound. This is called a seroma. It usually goes away within a few weeks. Sometimes your nurse or doctor may drain it off with a needle and syringe. Stiff shoulder or arm After a mastectomy or having lymph nodes removed, your shoulder or arm may feel stiff or sore. 50 Understanding breast cancer in men It’s important to do the arm exercises that your physiotherapist or nurse shows you. This will help improve the movement in your shoulder or arm and reduce the risk of long-term problems. You should start the exercises the day after your operation and gradually build up what you can do. Breast Cancer Care (see page 121) have a leaflet about these exercises. Numbness and tingling in the upper arm You may have numbness and tingling if nerves have been injured during the operation. This is more likely if you had all the lymph nodes in the armpit removed. It may slowly improve over several months but is sometimes permanent. How your chest looks It is common to have swelling and bruising after your operation. This should improve after a few weeks, but let your nurse know if it doesn’t. If you had a SLNB, the dye may make your skin in that area look blue for a while, but this is normal. After breast surgery there will be a scar across your chest in line with where your nipple used to be. There may also be a dent where the breast tissue has been removed. To begin with, your scar may be red if you have white skin, or darker if you have dark skin. It may also be firm and slightly raised. Over time, it will flatten and fade. Everyone’s skin heals differently. If you have dark skin or fair, freckled skin, scars can take longer to settle and may be more noticeable for longer. For some men this won’t be a problem at all. But, it can affect your confidence and how you feel about yourself as a man. If you are worried about changes in your appearance, talk to your breast care nurse or surgeon. Treating breast cancer in men 51 You may worry that your partner will be put off by your scars or a change in how your body looks. If you’re feeling self-conscious about how you look, talking with your partner or specialist nurse can help you feel more confident. Reconstruction of the breast area is not commonly carried out for men as implants don’t give the right shape for men. But it may be possible to improve the appearance of the chest area with surgery. Your surgeon or breast care nurse can also discuss with you ways of recreating the appearance of a nipple. Going home Most men will go home on the day of their surgery or the day after. When you get home, take things easy for a while. How you feel depends on the operation you’ve had. It’s common to feel very tired, so try to have plenty of rest and eat well. Although you might feel you have recovered physically, you may continue to feel emotionally tired. You may need to avoid lifting or carrying anything heavy for a few weeks. It’s important to carry on with the exercises you were shown in hospital. Try to do a bit more each day and rest in between so that you build up the amount that you do gradually. Some insurance policies give specific time limits for not driving after surgery – so check this with your insurance company. Don’t drive unless you feel in full control of the car. 52 Understanding breast cancer in men Before you leave hospital, you’ll be given an appointment to attend the outpatient clinic to see the surgeon and breast care nurse. At the clinic they will check that the wound is healing properly. They’ll also tell you the stage of the cancer (see pages 31–33). Your doctors will discuss with you any further treatment that you may need. This is a good time for you to ask questions or talk to them about any problems you have. There is space on page 125 for you to write these down. Late effects of surgery Some men may have problems with the effects of surgery for some months or longer after their operation. Tell your breast care nurse if you have any of these or if there’s anything you are worried about. Cording This is an uncomfortable feeling like a tight cord running from the armpit to your hand. This is called cording. It can happen weeks or months after surgery and usually gets better over a few months. You may need physiotherapy and massage to improve it. Pain and changes in sensation Rarely some men have numbness, tingling or pain in the upper arm, because the nerves have been affected by surgery. Your doctor can prescribe low doses of antidepressant drugs and anticonvulsants (drugs to stop fits) to improve these symptoms. They help to reduce the pain caused by nerve damage. Treating breast cancer in men 53 Changes to your arm/shoulder movement Arm and shoulder movement and strength usually improve after surgery. Doing your exercises helps reduce the risk of long-term problems. If you have problems, ask your doctor for a referral to a physiotherapist. If moving your shoulder or arm is painful, your doctor can prescribe you some painkillers. Lymphoedema Surgery or radiotherapy to the lymph nodes in the armpit can sometimes lead to a swelling of the arm called lymphoedema. If you notice any swelling, speak to your breast care nurse or doctor. The earlier the treatment for lymphoedema begins, the more effective it can be. There is information on how to help reduce your risk of getting lymphoedema on pages 85–86. Our booklet Managing the late effects of breast cancer treatment has more information. Treating breast cancer in men 55 Radiotherapy Radiotherapy uses high-energy rays to destroy cancer cells, while doing as little harm as possible to normal cells. You may be given it to reduce the risk of the cancer coming back in the chest area and in the nearby lymph nodes. You usually start radiotherapy 4–6 weeks after surgery unless you have chemotherapy. Radiotherapy after surgery Some men may need radiotherapy after mastectomy. Your cancer doctor may advise you to have radiotherapy after mastectomy if: •• the cancer was large •• the cancer was high-grade •• several lymph nodes contain cancer cells •• there were cancer cells close to the edge of the removed breast tissue. If you had a wide local excision (see pages 43–44) you will usually need radiotherapy to the area where the cancer was removed. Radiotherapy to lymph nodes If some of the lymph nodes from your armpit contain cancer cells, you may have radiotherapy to the rest of the nodes. If you had all the lymph nodes in your armpit removed, you usually won’t need to have radiotherapy to this area. 56 Understanding breast cancer in men How it is given You’ll usually have a course of radiotherapy lasting three weeks. You have the treatment in the hospital radiotherapy department as a series of short, daily sessions. Each treatment takes 10–15 minutes and they are usually given from Monday–Friday, with a rest at the weekend. Your doctor will talk to you about the treatment and possible side effects. External radiotherapy doesn’t make you radioactive and it’s safe for you to be around other people, including children, after your treatment. Planning radiotherapy Radiotherapy has to be carefully planned to make sure it’s as effective as possible. A doctor, called a clinical oncologist, will plan your treatment. On your first visit to the radiotherapy department you will have a CT scan or lie under a machine called a simulator, which takes x-rays of the area to be treated. You usually have markings drawn on your skin to show the exact place where the radiographer (who gives the treatment) directs the rays. Usually permanent markings (tattoos) the size of a pinpoint are made. These are only done with your permission. It can feel a little uncomfortable while they’re being made, but it makes sure treatment is given to the right area. Positioning You’ll need to be able to position your arm so that the radiotherapy machine can give the treatment effectively. A physiotherapist can show you some exercises to do to make this easier if your muscles and shoulder feel stiff or painful. Treating breast cancer in men 57 Treatment sessions At the start of each session the radiographer will position you carefully on the couch and make sure you are comfortable. During your treatment you’ll be alone in the room, but you can talk to the radiographer who will watch you from the next room. Radiotherapy is not painful, but you will have to lie still for a few minutes during the treatment. We can send you a booklet with more information about radiotherapy. We also have a video about having radiotherapy at macmillan.org.uk/radiotherapy 58 Understanding breast cancer in men Side effects of radiotherapy You may develop side effects over the course of your treatment. These usually disappear gradually over a few weeks or months after treatment finishes. Your doctor, nurse or radiographer will discuss this with you so you know what to expect. Let them know about any side effects you have during or after treatment, as there are often things that can be done to help. Skin irritation You may develop redness, dryness and itching of the skin in the treatment area. If you have dark skin it may get darker or have a blue or black tinge. Your doctor can prescribe creams to soothe your skin if it becomes sore and flaky. Usually, any skin reaction settles down 2–4 weeks after radiotherapy. You’ll be given advice on how to look after your skin, such as: •• Don’t use perfumed soaps, deodorants/antiperspirants or any creams (unless prescribed by your cancer specialist). •• Have showers rather than baths but turn away from the spray to protect your chest. If you do have a bath, avoid soaking the affected area for too long. •• Pat the area dry gently with a soft towel – don’t rub. •• Wear loose clothing as this may be more comfortable and less likely to irritate your skin. •• Avoid exposing the treated area to sunshine for at least a year after treatment finishes. Use suncream with a high sun protection factor (SPF) of at least 30, to protect your skin if it’s exposed. Treating breast cancer in men 59 Hair loss If you have hair on your chest, you will lose it from the treatment area during radiotherapy. It will grow back after treatment is over. Tiredness You’re likely to feel tired during treatment, and this may continue for a month or two after it finishes. Pace yourself and save energy for the things you have to do, and that you enjoy. Get plenty of rest but balance this with some physical activity, such as short walks, which will give you more energy. There’s also a video of Denton’s experience of fatigue at macmillan.org.uk/fatigue Our booklet Coping with fatigue has more helpful tips. Aches and swelling You may notice a dull ache or shooting pains in the treated area lasting for a few seconds or minutes. Sometimes the area becomes swollen. These effects usually improve quickly after treatment finishes. 60 Understanding breast cancer in men Late effects Radiotherapy to the breast may cause side effects that occur months or longer after radiotherapy. If you’re worried about a particular side effect, talk to your cancer specialist. You may notice red ‘spidery’ marks (telangiectasia) appearing on your chest. This is caused by radiotherapy damage to the small blood vessels in the skin, but it’s harmless. It’s rare for radiotherapy to cause any heart problems and only if you had treatment to your left side. Problems with the ribs in the treated area or with the lungs are also rare. Let your doctor know if you notice any problems with your breathing or have any pain in that area. Radiotherapy for secondary breast cancer Radiotherapy can be used to treat secondary cancer that is in the bone or skin. It can help to shrink the cancer and relieve symptoms such as pain. This is called palliative radiotherapy. You may only need one or two doses of radiotherapy to treat secondary breast cancer. This type of radiotherapy causes very few side effects. Treating breast cancer in men 61 Chemotherapy Chemotherapy uses anti-cancer (cytotoxic) drugs to destroy cancer cells. Cytotoxic means toxic to cells. These drugs disrupt the way cancer cells grow and divide but they also affect normal cells. When you have chemotherapy Some men have chemotherapy before surgery to shrink a large cancer (neo-adjuvant treatment). Or your cancer specialist may recommend you have chemotherapy after surgery to reduce the risk of breast cancer coming back. This is called adjuvant treatment. Your doctor or nurse will explain the benefits of this to you and the likely side effects. You are usually offered chemotherapy after surgery if the cancer: •• is large •• is high-grade •• has spread to the lymph nodes •• is HER2-positive •• is triple-negative. Chemotherapy can also be used to control breast cancer that has come back (recurrent cancer) or spread to another part of the body (secondary breast cancer). Cancer research trials look at how to improve the effectiveness of chemotherapy and other therapies. Your cancer specialist may ask you to take part in a research trial that compares different types of treatment (see pages 79–81). 62 Understanding breast cancer in men How you have chemotherapy You usually have chemotherapy in the chemotherapy day unit. The nurse will usually give you drugs into a vein (intravenously) but you may have some as tablets. The nurse gives you chemotherapy drugs into a vein by injection or as a drip (infusion). You usually have them through a small tube (cannula) in your hand or arm. Sometimes you have them through a soft, plastic line called a central line or a PICC line. These go into a large vein in your chest or your upper arm. You can also have the drugs given into a tube that has a rubber disc (port) under the skin on your upper chest. You can read more about lines and ports in our booklet Understanding chemotherapy. You will have several sessions of chemotherapy. Each session takes a few hours. After the session, you will have a rest period. This allows your body to recover from the side effects. The chemotherapy session and the rest period is called a cycle of treatment. The length of a cycle depends on the chemotherapy drugs you’re taking, but most cycles are 1–3 weeks long. Your doctor or nurse will explain more about this. Most, but not all, courses of chemotherapy are six cycles. Treating breast cancer in men 63 The drugs used If you are having adjuvant chemotherapy, you will have a combination of different chemotherapy drugs. Some commonly used combinations include: •• FEC – fluorouracil (5FU), epirubicin and cyclophosphamide •• FEC-T – FEC followed by docetaxel (Taxotere®) •• AC or EC – doxorubicin (Adriamycin®) and cyclophosphamide or epirubicin and cyclophosphamide •• CMF – cyclophosphamide, methotrexate and fluorouracil (5FU) •• E-CMF – epirubicin and CMF. Adjuvant chemotherapy usually includes an anthracycline drug, such as epirubicin or doxorubicin. If there is more risk of the cancer coming back, docetaxel (Taxotere) is also usually included. Your doctor may offer you a choice of chemotherapy treatments. Secondary breast cancer For secondary breast cancer, the drugs you have will depend on the chemotherapy drugs you’ve previously had. You often have a single drug but sometimes a combination of drugs are used. Drugs that may be used to treat secondary breast cancer include: •• docetaxel •• paclitaxel •• vinorelbine (Navelbine®) •• capecitabine (Xeloda®). Our booklet Understanding chemotherapy has more information about chemotherapy treatment and its side effects. We can send you information about individual drugs and combinations. Treating breast cancer in men 65 Side effects of chemotherapy Chemotherapy drugs may cause unpleasant side effects, but these can usually be well controlled with medicines and will usually go away once treatment has finished. Not all drugs cause the same side effects and some people may have very few. You can talk to your doctor or nurse about what to expect from the treatment that’s planned for you. The main side effects are described here, as well as some ways to reduce or control them. We can send you further information about many of the side effects mentioned here. Risk of infection Chemotherapy can reduce the number of white blood cells, which help fight infection. If the number of your white blood cells is low, you’ll be more prone to infections. A low white blood cell count is called neutropenia. Always contact the hospital immediately on the 24-hour contact number you’ve been given and speak to a nurse or doctor if: •• your temperature goes over 37.5°C (99.5°F) or over 38°C (100.4°F), depending on the advice given by your chemotherapy team •• you suddenly feel unwell, even with a normal temperature •• you feel shivery and shaky •• you have any symptoms of an infection such as a cold, sore throat, cough, passing urine frequently (urine infection), diarrhoea. 66 Understanding breast cancer in men If necessary, you’ll be given antibiotics to treat any infection. You’ll have a blood test before each cycle of chemotherapy to make sure your white blood cells have recovered. Occasionally your treatment may need to be delayed if the number of your white blood cells is still low. After chemotherapy, your nurse may give you injections of a drug called G-CSF under the skin. This encourages the production of white blood cells and reduces the risk of infection. We have information about G-CSF that you may find helpful. Bruising and bleeding Chemotherapy can reduce the number of platelets in your blood. Platelets are cells that help the blood to clot. Tell your doctor if you have any unexplained bruising or bleeding, such as nosebleeds, bleeding gums, blood spots or rashes on the skin. Anaemia (low number of red blood cells) Chemotherapy can reduce the number of red blood cells. A low red blood cell count is called anaemia, which can make you feel tired or short of breath. Tell your doctor or nurse if you have these symptoms. Feeling sick (nausea) Some chemotherapy drugs can make you feel sick (nauseated) or even be sick (vomit). Your cancer specialist will prescribe anti‑sickness (anti-emetic) drugs to prevent this. Let your doctor or nurse know if they don’t work for you as there are different drugs you can try. We can send you more information about nausea and vomiting. Treating breast cancer in men 67 Tiredness (fatigue) You’re likely to become tired and have to take things more slowly. Try to pace yourself and save your energy for things that you want to do or that need doing. Balance rest with some physical activity. Even just going for a short walk will help increase your energy. Our booklet Coping with fatigue has more helpful tips. Hair loss Some chemotherapy drugs may cause hair loss. Some people may have complete hair loss including eyelashes and eyebrows. Others may only have some hair loss or thinning. It depends on what chemotherapy drugs you are having. Your doctor or nurse can tell you more about what to expect. If you do have hair loss, your hair should return to how it was within about 3–6 months of the end of treatment. It may grow back straighter, curlier, finer, or a slightly different colour than it was before. Your nurse can give you advice about coping with hair loss and how to look after your scalp. ‘I was dreading the word chemotherapy and thinking what was going happen. I thought I was going to be really ill. Then coming through it and out the other side, you look back and you think well, actually, for me it wasn’t too bad.’ Stuart 68 Understanding breast cancer in men Sore mouth Your mouth may become sore or dry, or you may notice small ulcers during treatment. Drinking plenty of fluids, and cleaning your teeth regularly and gently with a soft toothbrush, can help to reduce the risk of this happening. Tell your nurse or doctor if you have any of these problems, as they can prescribe mouthwashes and medicine to prevent or clear mouth infections. Taste changes You may notice that food tastes different. Some people describe having a metallic taste in their mouths. Normal taste usually comes back after treatment finishes. A dietitian or specialist nurse at your hospital can give you advice about ways of coping with this side effect. Bowel changes Chemotherapy can cause constipation or diarrhoea. Constipation can usually be helped by drinking plenty of fluids, eating more fibre in your diet and doing some gentle exercise. You may need to take medicine to help (laxatives). Your doctor can prescribe these or you can buy them at a pharmacy. Diarrhoea can usually be easily controlled with medicine but tell your doctor if it’s severe or continues. It’s important to drink plenty of fluids if you have diarrhoea. Numbness or tingling in hands or feet Some chemotherapy drugs can affect the nerves in your hands or feet. This can cause tingling or numbness, a sensation of pins and needles or muscle weakness (peripheral neuropathy). It’s important to let your doctor or nurse know if this happens. They may need to change the chemotherapy drug if it gets worse. Usually, peripheral neuropathy gradually gets better when chemotherapy is over, but sometimes it’s permanent. We can send you more information about peripheral neuropathy. Treating breast cancer in men 69 Contraception Your doctor will advise you not to father a child while having chemotherapy as the drugs can affect your sperm. It’s important to use effective contraception during your treatment and for at least a few months afterwards. You can discuss this with your doctor or nurse. Sex You’re usually advised to use condoms if you have sex within 48 hours of chemotherapy. This is to protect your partner in case the drugs are present in semen. Fertility Some chemotherapy drugs can affect your ability to father a child. If chemotherapy is likely to make you infertile and you want to have children, it may be possible to store sperm before treatment begins. If your fertility is a concern, it’s important to talk to your doctor about this before your treatment starts. We have a leaflet called Cancer treatment and fertility – information for men, which you may find helpful. 70 Understanding breast cancer in men Hormonal therapy Hormones help to control how cells grow and what they do in the body. The hormone oestrogen encourages some breast cancers to grow. Hormonal therapies reduce the levels of oestrogen in the body, or prevent it from attaching to the cancer cells. They only work for men with oestrogen-receptor (ER) positive cancers (see page 35), which is about nine out of every ten men diagnosed with breast cancer. Hormonal therapy is one of the main treatments for breast cancer in men. The most commonly used hormonal therapy is tamoxifen, but other therapies may be used. Hormonal therapy is usually given for at least five years to reduce the risk of breast cancer coming back. You can also have hormonal therapy to treat breast cancer that comes back in the same area (recurrent cancer) or has spread to another part of the body (secondary breast cancer). If this happens, your doctor will offer you a different treatment to tamoxifen. You have it for as long as it’s working to control the cancer. Treating breast cancer in men 71 Types of hormonal therapy Tamoxifen Tamoxifen is an anti-oestrogen drug. It prevents oestrogen attaching to breast cancer cells and encouraging them to grow. You take it daily as a tablet, usually for five years. We have more information about tamoxifen that we can send you. ‘I’m in remission but I still feel like I’m recovering. I’m taking Tamoxifen for another two years. The side effects are a bit odd for me – having hot flushes and things like that is quite strange as a man.’ Herbie Aromatase inhibitors Aromatase inhibitors (AIs), such as letrozole, anastrozole and exemestane, also reduce oestrogen levels. You take them daily as a tablet. These drugs reduce oestrogen levels in men by stopping male hormones (androgens) being made into oestrogen. You usually have an AI if you cannot take tamoxifen, or if the cancer has come back or is no longer being helped by tamoxifen. Some of the oestrogen in a man’s body is produced directly by the testicles, not by androgens. Because of this, your doctor may give you another drug called goserelin (Zoladex®) along with your AI. 72 Understanding breast cancer in men Goserelin (Zoladex®) The testicles are stimulated to make the hormones oestrogen and testosterone by signals received from the pituitary gland in the brain. Goserelin blocks these messages and stops the testicles making oestrogen and testosterone. Goserelin is given as a slow‑release implant that is injected just under the skin once every 1–3 months. Fulvestrant (Faslodex®) This is a newer type of anti-oestrogen that is given as an injection. It may occasionally be used if you have already had other hormonal therapies. We have information about these hormonal therapy drugs that we can send you. Side effects of hormonal therapy People often cope well with hormonal therapies but the side effects can vary from person to person. Tell your doctor or nurse if you have problems. There are usually things that can be done to manage difficult side effects. Often side effects improve over the first 3–6 months. But, if they continue to be a problem, your doctor may prescribe a different hormonal drug. Lower sex drive and erection difficulties Some men are less interested in sex or have problems with erections. If this happens, it may continue for as long as you have the treatment. Many men say this is one of the most difficult side effects to deal with. Treating breast cancer in men 73 Try not to feel embarrassed about talking to your doctor or nurse about any difficulties with sex. They are used to talking about these side effects and giving advice. There are treatments that they can prescribe to help you get an erection. Our booklet Sexuality and cancer in men has more information. Hot flushes and sweats These can be quite common, but many men find that the hot flushes wear off after a period of time. There are a number of ways to help reduce or control hot flushes and sweats. Some men find it helps to cut down on tea, coffee, nicotine and alcohol. Headaches Headaches can usually be relieved with mild painkillers. Feeling sick Sometimes hormonal therapies can make you feel sick. If your hormonal therapy is taken as a tablet, you may find taking it with food can help. Mood swings You may feel irritable or low in mood (depressed) when taking hormonal therapies. There are treatments your doctor can prescribe to help with this. Sore joints Some people may have sore joints, but this is usually mild and will stop when the treatment is finished. Treating breast cancer in men 75 Targeted therapy Targeted therapies (sometimes called biological therapies) are drugs that work differently from chemotherapy. The main targeted therapy used in breast cancer is trastuzumab (usually called Herceptin®). It is only given to men with HER2-positive breast cancer (see page 35). Trastuzumab attaches to HER2 receptors on the surface of breast cancer cells and stops them dividing and growing. It also helps the body’s own immune cells to destroy the cancer cells. You usually have it to reduce the risk of breast cancer coming back. But it can also be given to help control secondary breast cancer. So far research into trastuzumab has only been done in women with breast cancer. This means the benefits of trastuzumab in men are not fully clear. We have more information about trastuzumab. How trastuzumab is given You usually have trastuzumab every three weeks for a year. It’s given in the chemotherapy day unit or outpatient department. You have it with chemotherapy or on its own. The nurse gives you trastuzumab as a drip (infusion), into a vein (intravenously) or as an injection under the skin (subcutaneously). 76 Understanding breast cancer in men When it’s given as a drip, you have it slowly the first time (over about an hour and a half) so the nurses can check you for signs of a reaction. After this you can have it over about 30 minutes. It only takes a few minutes to have it as an injection under the skin. But you still have to wait for an hour and a half so the nurses can check you for any reaction. If you have trastuzumab to treat secondary breast cancer, you have it as long as it is controlling the cancer. Treating breast cancer in men 77 Side effects of trastuzumab The side effects of trastuzumab are usually mild. You may get some side effects during the infusion or injection or up to four hours after, particularly with the first dose. These include flu-like symptoms, such as a headache, high temperature (fever) and chills, or feeling sick. They generally get better within a few hours of the drip finishing. Another possible side effect is an allergic reaction, but this is rare. The nurses will check for signs of a reaction. If it happens, they can treat it quickly with drugs. You may get other side effects after treatment. These include diarrhoea, headaches and feeling sick. Effects on the heart Trastuzumab may lead to changes in the way your heart works. Usually, any effect is mild and reversible. You’ll have tests to check your heart before and during treatment to make sure the drug isn’t causing any damage. You may be given heart medicines to prevent heart problems or to treat any that develop. Treating breast cancer in men 79 Research – clinical trials Cancer research trials are carried out to try to find new and better treatments for cancer. Trials that are carried out on patients are known as clinical trials. These may be carried out to: •• test new treatments, such as new chemotherapy drugs or targeted therapies •• look at new combinations of existing treatments, or change the way they are given to make them more effective or reduce side effects •• compare the effectiveness of drugs used to control symptoms •• find out how cancer treatments work •• find out which treatments are the most cost-effective. Trials are the only reliable way to find out if a different type of surgery, chemotherapy, hormone therapy, radiotherapy, or other treatment is better than what is already available. Taking part in a trial You may be asked to take part in a treatment research trial. There can be many benefits in doing this. Trials help to improve knowledge about cancer and develop new treatments. You will be carefully monitored during and after the study. Usually, several hospitals around the country take part in these trials. It’s important to bear in mind that some treatments that look promising at first can later be found to not to be as good as existing treatments or to have side effects that outweigh the benefits. 80 Understanding breast cancer in men If you decide not to take part in a trial, your decision will be respected and you don’t have to give a reason. However, it can help to let the staff know your concerns so that they can give you the best advice. There will be no change in the way that you’re treated by the hospital staff, and you’ll be offered the standard treatment for your situation. Clinical trials are described in more detail in our booklet Understanding cancer research trials (clinical trials). Blood and tumour samples Blood and tumour samples may be taken to help make the right diagnosis. You may be asked for your permission to use some of your samples for research into cancer. If you take part in a trial you may also give other samples, which may be frozen and stored for future use when new research techniques become available. Your name will be removed from the samples so you can’t be identified. The research may be carried out at the hospital where you are treated, or at another one. This type of research takes a long time, and results may not be available for many years. The samples will be used to increase knowledge about the causes of cancer and its treatment, which will hopefully improve the outlook for future patients. Treating breast cancer in men 81 Current research Because breast cancer in men is very rare, it’s difficult to run large clinical trials that can collect lots of information and study the effects of treatments. A lot of the information about breast cancer in men is based on research carried out in women with breast cancer. Because of this, a group of international specialists have formed the Male Breast Cancer Study. This group plans to pool current information on risks, causes and treatments as well as to gather tumour samples. This means they will be able to plan more trials in the future. After your treatment Follow-up84 Sexuality87 Well-being and recovery 88 Getting help and support 92 84 Understanding breast cancer in men Follow-up After treatment, you may have regular check-ups. Your appointments may be every few months at first, but eventually they may be once a year. Appointments are a good time to talk to your doctor or nurse about any concerns you have. If you notice any new symptoms, you can contact your doctor or nurse between your appointments for advice. Sometimes, instead of routine appointments, some men are given information by their breast care nurse on what to look out for. They are asked to contact their cancer specialist or nurse if there’s anything they’re worried about. Some men may attend follow up at a nurse-led clinic and only see their cancer doctor if something needs to be checked further. You may also need to see your specialist or GP if you’re having ongoing treatment with hormonal therapy, or if you have any treatment side effects that haven’t gone away. Many men find they get anxious for a while before the appointments. This is natural. It can help to get support from family, friends or one of the organisations listed on pages 121–124. You can also contact the Macmillan Support Line on 0808 808 00 00. After your treatment 85 Be aware of changes The treated side of your chest will look and feel different depending on the treatment you’ve had. It’s a good idea to be aware of what’s now normal for you. Your breast care nurse can tell you what you should expect and what to look out for. It’s also important to be aware of what to look out for in your untreated breast. If you notice anything unusual between appointments, contact your cancer specialist or breast care nurse straight away. ‘Men check other parts of their anatomy, but they don’t check their breasts. If they have a problem, seepage around the nipple, or a hard nipple, or little painful areas around the nipple, or other parts of the breast, they should go to their GP. I don’t see where the stigma is. Get it checked out. It’s such an easy procedure.’ Steve Lymphoedema Lymphoedema is a swelling of the arm that sometimes happens after surgery or radiotherapy to the lymph nodes in the armpit. It can develop months or years after treatment. It’s more likely if you’ve had all or a large number of lymph nodes removed. Having radiotherapy to the armpit as well as surgery also increases lymphoedema risk. 86 Understanding breast cancer in men If you notice any swelling in your arm, hand or chest, always get it checked by your doctor or nurse. The earlier lymphoedema is diagnosed the easier it is to manage and treat successfully. Reducing your risk of lymphoedema There are things you can do to help reduce your chances of developing lymphoedema. It’s important to protect your arm and hand, and to look after the skin in that area. Here are some tips: •• Keep your skin clean and moisturise every day with unperfumed cream or oil to keep it in good condition. •• Wash small grazes and cuts straight away, put on antiseptic cream and cover if necessary. •• See your GP straight away if you get signs of infection around a cut, for example, if it becomes red, hot or swollen. •• Avoid needles (blood tests, injections, drips or acupuncture) and having your blood pressure taken in the affected arm. •• Wear gloves and long sleeves when doing any household tasks, DIY, gardening or when handling animals. •• Use nail clippers to cut your nails. Don’t push back or cut the cuticles. •• Avoid high temperatures – don’t use saunas or hot tubs. •• Cover up in the sun and use a suncream with a high sun protection factor (SPF) of at least 30. Our booklet Understanding lymphoedema has more information. There is also information and several videos about lymphoedema at macmillan.org. uk/lymphoedema After your treatment 87 Sexuality Breast cancer, its treatments and side effects may affect your sex life and your feelings about yourself as a man. Loss of sex drive (libido) and erection difficulties (impotence) can occur. Difficulties often improve after treatment, although for some men it may take longer or continue. You may feel insecure and worry about your current or future relationships. If you have a partner, it’s important to let them know if you don’t feel interested in sex. It can help to talk openly with them about your feelings. Cuddles, kisses and massages can show how much you care for someone, even if you don’t have sex. If you have problems getting or maintaining an erection, there are different options that can help you. Let your doctor or nurse know if any difficulties with your sex life don’t improve. They may be able to reassure you or offer further help and support. If you feel uncomfortable talking to your doctor or nurse, you can call us on 0808 808 00 00. Some people may find it helpful to talk to a sex therapist. You can contact a therapist through the College of Sexual and Relationship Therapists (see page 122). Our booklet Sexuality and cancer has more information and tips that may help you. 88 Understanding breast cancer in men Well-being and recovery After treatment, some men choose to make some positive lifestyle changes. This doesn’t mean you didn’t lead a healthy lifestyle before but you might now want to focus more on your well-being. Eat well and keep to a healthy weight After treatment, it’s not unusual to find that you have put on weight. This can happen with chemotherapy and hormonal therapy. When you are ready, you can ask your GP if your weight is within the normal range for your height. There’s some evidence that keeping to a healthy weight reduces the risk of some other cancers, heart problems and other illnesses such as diabetes. Try to: •• only eat as much food as you need •• eat a balanced diet with lots of fruit and vegetables •• eat less saturated fat and sugar •• become more physically active. Our booklets Managing your weight after cancer treatment and Healthy eating and cancer both have some helpful tips. 90 Understanding breast cancer in men Get physically active Being physically active helps to keep your weight healthy and can reduce stress and tiredness. It also helps to keep your bones strong and your heart healthy. We have a booklet called Physical activity and cancer treatment, which has more information. You can also watch videos about the benefits of physical activity, including stories from people with cancer, at macmillan.org.uk/physicalactivity Look after your bones Aromatase inhibitors (see page 71) can cause bone thinning (osteoporosis) in women, but it’s not clear if this happens to the same extent in men. Zoladex may cause bone thinning when it’s given over a longer period of time. It’s a good idea to look after your bones. Keeping physically active, eating a healthy diet with enough calcium and vitamin D, and not smoking helps to keep your bones healthy. Our booklet about Bone health has more information. Look after your heart Some treatments for breast cancer may increase the risk of getting heart problems later in life. Look after yourself by keeping physically active, eating healthily, not smoking and sticking to sensible drinking guidelines. We have more information about heart health after cancer treatment. After your treatment 91 Stop smoking If you smoke, giving up is one of the healthiest decisions you can make. Smoking increases your risk of bone thinning (osteoporosis) and is a major risk factor for smoking-related cancers and heart disease. Our booklet Giving up smoking has more information and tips to help you stop. Stick to sensible drinking Stick to sensible drinking guidelines which recommend that men drink fewer than 3 units of alcohol a day, or fewer than 21 units a week. Try to have a few alcohol-free days each week. There is more information about recommended drinking guidelines in our booklet Healthy eating and cancer. 92 Understanding breast cancer in men Getting help and support Different people can help you during and after treatment. Practical help If you need help at home during or after treatment, a nurse or hospital social worker may be able to arrange this. If you have children, the social worker may arrange some help with childcare. We have information on childcare that we can send you. A social worker or benefits adviser (see pages 123–124) can tell you about benefits you may be able to claim and help with other costs. If you need help with a wound or wound drain, the district nurses can visit you at home to help with this. Emotional help It’s common to have different and sometimes difficult feelings after cancer treatment (see pages 96–101). But as you recover and get back to your everyday life, these usually get easier to deal with. Talking to family and friends often helps. If you think you may be depressed, or feel helpless or anxious a lot of the time, talk to your cancer specialist or nurse. They can refer you to a psychologist or counsellor who specialises in the emotional problems of people with cancer. Our cancer support specialists on 0808 808 00 00 can tell you more about counselling and let you know about services in your area. After your treatment 93 Complementary therapies Some men find that using some complementary therapies help them to relax or cope with treatment side effects. Some hospitals or support groups may offer therapies such as relaxation or aromatherapy. Our booklet Cancer and complementary therapies has more information. Support groups Self-help or support groups offer a chance to talk to other people who understand what you’re going through. You can call us or visit our website for information about support groups in the UK. Online support Many people get support on the internet. There are online support groups, social networking sites, forums, chat rooms and blogs for people affected by cancer. You can use these to share your experience and to ask questions, or get and give advice based on your breast cancer experience. Our online community (macmillan.org.uk/community) is a social networking site where you can talk to people in our chat rooms, write blogs, make friends and join support groups. Your feelings and relationships Your feelings What you can do 96 101 Relationships102 If you are a relative or friend 104 Talking to children 105 96 Understanding breast cancer in men Your feelings It’s common to feel overwhelmed by different feelings when you’re told that you have cancer. We talk about some of these here. Partners, family and friends may also have some of the same feelings. You might have different reactions to the ones we describe here. There is no right or wrong way to feel. You’ll cope with things in your own way. Because breast cancer may be thought of as ‘a woman’s condition’, men with breast cancer can feel embarrassed about their diagnosis. You may have to deal with a lack of awareness about the cancer and sometimes some unhelpful reactions from others. Talking to people close to you or other people affected by cancer can often help. Shock and disbelief You may find it hard to believe it when your doctor tells you that you have cancer. It’s common to feel shocked and numb. You may not be able to take in much information and find that you keep asking the same questions again and again. At first, you might find it hard to talk to family and friends about the cancer. This usually gets easier as the shock wears off and it becomes more real to you. You may find you can’t think or talk about anything but the cancer. This is because your mind is trying to process what you’re going through. Your feelings and relationships 97 Fear and anxiety People can be very anxious or frightened about whether treatment will work and what will happen in the future. This uncertainty can be one of the hardest things to cope with. It can help to try to focus on what you can control. You may want to find out more about the cancer, its treatment and how to manage side effects. It can also help to talk about your feelings and to take time to do things that are important to you and that you enjoy. Doctors often know roughly how many people can benefit from a type of treatment. But they can’t be sure what will happen to an individual person. Although they may not be able to answer your questions fully, they can usually talk through any problems with you and give you some guidance. Avoidance Some people cope by not wanting to know very much about the cancer and by not talking about it. If you feel like this, let your family and friends know that you don’t want to talk about it right now. You can also tell your doctor if there are things you don’t want to know or talk about yet. Occasionally, this avoidance can be extreme. Some people may not believe that they have cancer. This is sometimes called being in denial. It may stop them making decisions about treatment. If this happens, it’s very important for them to get help from their doctor. 98 Understanding breast cancer in men Sometimes, avoidance is the other way around. Family and friends may seem to avoid you and the fact that you have cancer. They may not want to talk about it or they might change the subject. This is usually because they are also finding the cancer difficult to cope with, and they may need support too. Try to let them know how this makes you feel and that talking openly with them about your illness will help you. Anger You may feel angry about your illness and sometimes resent other people for being well. These are normal reactions, especially when you feel frightened, stressed, out of control or unwell. You may get angry with the people close to you. Let them know that you are angry at your illness and not at them. Finding ways to help you relax and reduce stress can help with anger. This can include talking about or writing down how you feel, gentle exercise, breathing or relaxation therapy, yoga or meditation. Guilt and blame Some people feel guilty or blame themselves or others for the cancer. You may try to find reasons for why it has happened to you. Most of the time, it’s impossible to know exactly what has caused a person’s cancer. Over time, several different factors may act together to cause a cancer. Doctors don’t fully understand all of these factors yet. Instead, try to focus on looking after yourself and getting the help and support you need. Your feelings and relationships 99 Feeling alone Some people feel alone because they don’t have enough support. Family and friends may live far away, have other commitments or feel uncomfortable because of their own fears about cancer. Try to let your family and friends know how you feel and how they could support you more. If you need more support, you can call the Macmillan Support Line free on 0808 808 00 00 and talk to one of our cancer support specialists. Our website can help you find out about local support groups – visit macmillan.org.uk/supportgroups You can also talk to other people going through the same thing on our online community at macmillan.org.uk/community It’s normal to have times when you want to be left alone to sort out your feelings. But if you find you’re avoiding people a lot of the time, then try to talk to your doctor or nurse. ‘I heard about this peer support thing – and what a relief it was. I talked to a guy who’d gone through exactly the same things that I’d gone through, who had had a mastectomy and who’d had chemotherapy and who could answer all my questions.’ David 100 Understanding breast cancer in men If you need more help These feelings can be very difficult to cope with and sometimes people need more help. This happens to lots of people and doesn’t mean you’re not coping. If you feel anxious, panicky or sad a lot of the time, or think you may be depressed, talk to your doctor or nurse. They can refer you to a doctor or counsellor who can help. They may also prescribe medicine to help with anxiety or an antidepressant drug. Our booklet How are you feeling? The emotional effects of cancer discusses the feelings you may have in more detail, and has suggestions for coping with them. ‘My Macmillan nurse, Lorraine, has been with me ever since my diagnosis. They asked if I needed counselling, but she’s always ready to listen to me so I don’t feel I need it. I can talk to her about anything. When I had surgery to remove the lump, she came in with me. She is fantastic, marvellous.’ Lance Your feelings and relationships 101 What you can do One of the hardest things to cope with can be the feeling that the cancer and its treatment have taken over your life. This is a common feeling, but there are lots of things you can do. There may be days when you feel too tired to even think about what could help. You’ll have good and bad days, but if you’re overwhelmed by these feelings, let your doctor or nurse know. It may be that you have depression, and this is treatable so they should be able to help. Finding ways to cope You may find it helps to try to carry on with life as normally as possible, by staying in contact with friends and keeping up your usual activities. Or you may want to decide on new priorities in your life. This could mean spending more time with family, going on the holiday you’ve dreamed about or taking up a new hobby. Just thinking about these things and making plans can help you realise that you still have choices. Some people want to improve their general health by eating a more healthy diet, by getting fitter or by finding a relaxing complementary therapy. Understanding about the cancer and its treatment helps many people cope. It means they can discuss plans for treatment, tests and check-ups with their doctors and nurses. Being involved in these choices can help give you back control of your life. 102 Understanding breast cancer in men Relationships Your cancer experience may have improved your relationships with people close to you. Support from family and friends may have helped you cope. But cancer is stressful and can affect your relationships. Any problems usually improve over time, especially if you can talk openly about them. Your partner Some couples become closer when one partner has cancer. However, cancer can put a lot of strain on a relationship. Problems can develop, even between couples who’ve been together for a long time. If a relationship was already difficult, the stress of a major illness may make things worse. Even couples who are close may not always know how their partner is feeling. Talking openly about your feelings and listening to each other can help you understand each other. Our booklets Cancer, you and your partner and Sexuality and cancer have more information that may help. Family and friends Your family and friends may not always understand if you aren’t feeling positive. They may not know how much your treatment is affecting your life. Talking about how you feel will help them give you the support you need. Our booklet Talking about your cancer has more useful tips. Your feelings and relationships 103 If you are a relative or friend Some people find it hard to talk about cancer or share their feelings. You might think it’s best to pretend everything is fine, and carry on as normal. You might not want to worry the person with cancer, or you might feel you’re letting them down if you admit to being afraid. Unfortunately, denying strong emotions can make it even harder to talk, and may lead to the person with cancer feeling very isolated. Partners, relatives and friends can help by listening carefully to what the person with cancer wants to say. It may be best not to rush into talking about the illness. Often it’s enough just to listen and let the person with cancer talk when they are ready. You may find some of the courses on our Learn Zone website helpful. There are courses to help with listening and talking, to help friends and family support their loved ones affected by cancer. Visit macmillan.org.uk/learnzone to find out more. Our booklet Lost for words – how to talk to someone with cancer has more suggestions if you have a friend or relative with cancer. If you’re looking after a family member or friend with cancer, you may find our booklet Looking after someone with cancer helpful. It’s based on carers’ experiences and has lots of practical tips and information. We have more information about supporting someone with cancer at macmillan.org.uk/carers Your feelings and relationships 105 Talking to children Deciding what to tell children about your cancer is difficult. An open, honest approach is usually best. Even very young children can sense when something is wrong, and their fears can sometimes be worse than the reality. How much you tell children will depend on their age and how mature they are. It may be best to start by giving only small amounts of information, and gradually tell them more to build up a picture of your illness. Teenagers Teenagers can have an especially hard time. At a stage when they want more freedom, they may be asked to take on new responsibilities and they may feel over-burdened. It’s important that they can go on with their normal lives as much as possible and still get the support they need. If they find it hard to talk to you, you could encourage them to talk to someone close who can support and listen to them, such as a grandparent, family friend, teacher or counsellor. They may also find it useful to look at the website riprap.org.uk which has been developed especially for teenagers who have a parent with cancer. Work and financial support Work108 Financial help and benefits 110 108 Understanding breast cancer in men Work You may need to take time off work during your treatment and for a while afterwards. It can be hard to judge the best time to go back to work, and this will depend mainly on the type of work you do and how much your income is affected. It’s important to do what’s right for you. Getting back into your normal routine can be very helpful, and you may want to go back to work as soon as possible. It can be helpful to talk to your employer about the situation – it may be possible for you to work part-time or job share. On the other hand, it can take a long time to recover fully from cancer treatment, and it may be many months before you feel ready to return to work. It’s important not to take on too much, too soon. Your consultant, GP or specialist nurse can help you decide when and if you should go back to work. Employment rights The Equality Act 2010 protects anyone who has, or has had, cancer. Even if a person who had cancer in the past has been successfully treated and is now cured, they are still covered by the act. This means their employer must not discriminate against them for any reason, including their past cancer. The Disability Discrimination Act protects people in Northern Ireland. Our booklets Work and cancer, Working while caring for someone with cancer and Self‑employment and cancer have more information that may be helpful. There’s also lots more information at macmillan.org.uk/work 110 Understanding breast cancer in men Financial help and benefits If you are struggling to cope with the financial effects of cancer, help is available. If you cannot work because you are ill, you may be able to get Statutory Sick Pay. Your employer will pay this for up to 28 weeks of sickness. If you qualify for it, they cannot pay you less. Before your Statutory Sick Pay ends, or if you do not qualify for it, check whether you can get Employment and Support Allowance (ESA). This benefit is for people who cannot work because they are ill or disabled. There are two different types of ESA: •• contributory – you can get this if you have made enough national insurance contributions •• income-related – you can get this if your income and savings are below a certain level. Since October 2013, a new benefit called Universal Credit has started replacing income-related ESA in England, Scotland and Wales. This benefit is for people who are looking for work or on a low income. Personal Independence Payment (PIP) is a new benefit for people under 65 who find it difficult to walk or look after themselves (or both). You must have had these difficulties for at least three months, and they should be expected to last for the next nine months. Since April 2013, PIP has started to replace a similar older benefit called Disability Living Allowance in England, Scotland and Wales. Work and financial support 111 Attendance Allowance (AA) is for people aged 65 or over who find it difficult to look after themselves. You may qualify if you need help with things like getting out of bed, having a bath or dressing yourself. You don’t need to have a carer, but you must have needed care for at least six months. If you are terminally ill, you can apply for PIP, DLA or AA under the ‘special rules’. This means your claim will be dealt with quickly and you will get the benefit you applied for at the highest rate. 112 Understanding breast cancer in men Help for carers Carers Allowance is a weekly benefit that helps people who look after someone with a lot of care needs. If you don’t qualify for it, you can apply for Carer’s Credit. This helps you to build up qualifying years for a State Pension. More information The benefits system can be hard to understand, so it’s a good idea to talk to an experienced welfare rights adviser. You can speak to one by calling the Macmillan Support Line on 0808 808 00 00. We’ve just listed some benefits here, but there may be others you can get. You can find out about state benefits and apply for them online at gov.uk (England, Wales and Scotland) and nidirect.gov. uk (Northern Ireland). These websites have information about financial support, your rights, employment and independent living. You can also get information about these issues from the relevant Department for Work and Pensions helplines (see page 123) or Citizens Advice (see page 123). In Northern Ireland, you can call the Benefit Enquiry Line Northern Ireland on 0800 220 674. Our booklet Help with the cost of cancer has more detailed information. You might also find our video at macmillan.org.uk/ gettingfinancialhelp useful. Work and financial support 113 Insurance People who have, or have had, cancer may find it hard to get certain types of insurance, including life and travel insurance. A financial adviser can help you look at your needs and find the best deal for you. You can find a financial adviser by contacting one of the organisations on pages 123–124. Our booklets Insurance and Getting travel insurance may also be helpful. Further information About our information 116 Other ways we can help you 118 Other useful organisations 121 Your notes and questions 125 116 Understanding breast cancer in men About our information We provide expert, up-to-date information about cancer. And all our information is free for everyone. Order what you need Other formats You may want to order more We also provide information leaflets or booklets like this one. in different languages and Visit be.macmillan.org.uk or formats, including: call us on 0808 808 00 00. •• audiobooks We have booklets on different cancer types, treatments and side effects. We also have information about work, financial issues, diet, life after cancer and information for carers, family and friends. All of our information is also available online at macmillan. org.uk/cancerinformation There you’ll also find videos featuring real-life stories from people affected by cancer, and information from health and social care professionals. •• Braille •• British Sign Language •• Easy Read booklets •• ebooks •• large print •• translations. Find out more at macmillan. org.uk/otherformats If you’d like us to produce information in a different format for you, email us at cancerinformationteam@ macmillan.org.uk or call us on 0808 808 00 00. Further information 117 Help us improve our information We know that the people who use our information are the real experts. That’s why we always involve them in our work. If you’ve been affected by cancer, you can help us improve our information. We give you the chance to comment on a variety of information including booklets, leaflets and fact sheets. If you’d like to hear more about becoming a reviewer, email reviewing@macmillan. org.uk You can get involved from home whenever you like, and we don’t ask for any special skills – just an interest in our cancer information. 118 Understanding breast cancer in men Other ways we can help you At Macmillan, we know how a cancer diagnosis can affect everything, and we’re here to support you. No one should face cancer alone. Talk to us If you or someone you know is affected by cancer, talking about how you feel and sharing your concerns can really help. Macmillan Support Line Our free, confidential phone line is open Monday–Friday, 9am–8pm. Our cancer support specialists can: •• help with any medical questions you have about your cancer or treatment •• help you access benefits and give you financial advice •• be there to listen if you need someone to talk to •• tell you about services that can help you in your area. Call us on 0808 808 00 00 or email us via our website, macmillan.org.uk/talktous Information centres Our information and support centres are based in hospitals, libraries and mobile centres. There, you can speak with someone face to face. Visit one to get the information you need, or if you’d like a private chat, most centres have a room where you can speak with someone alone and in confidence. Find your nearest centre at macmillan.org.uk/ informationcentres or call us on 0808 808 00 00. Further information 119 Talk to others Online community Thousands of people use our No one knows more about the online community to make impact cancer can have on your friends, blog about their life than those who have been experiences and join groups through it themselves. That’s to meet other people going why we help to bring people through the same things. together in their communities You can access it any time and online. of day or night. Share your experiences, ask questions, Support groups or just read through people’s Whether you are someone posts at macmillan.org.uk/ living with cancer or a carer, community we can help you find support The Macmillan in your local area, so you healthcare team can speak face to face with people who understand. Our nurses, doctors and Find out about support groups other health and social care in your area by calling us or professionals give expert care by visiting macmillan.org.uk/ and support to individuals and selfhelpandsupport their families. Call us or ask your GP, consultant, district nurse or hospital ward sister if there are any Macmillan professionals near you. ‘Everyone is so supportive on the online community, they know exactly what you’re going through. It can be fun too. It’s not all just chats about cancer.’ Mal 120 Understanding breast cancer in men Help with money worries Having cancer can bring extra costs such as hospital parking, travel fares and higher heating bills. If you’ve been affected in this way, we can help. Financial advice Our financial guidance team can give you advice on mortgages, pensions, insurance, borrowing and savings. Help accessing benefits Our benefits advisers can offer advice and information on benefits, tax credits, grants and loans. They can help you work out what financial help you could be entitled to. They can also help you complete your forms and apply for benefits. Macmillan Grants Macmillan offers one-off payments to people with cancer. A grant can be for anything from heating bills or extra clothing to a much-needed break. Call us on 0808 808 00 00 to speak to a financial guide or benefits adviser, or to find out more about Macmillan Grants. We can also tell you about benefits advisers in your area. Visit macmillan.org.uk/ financialsupport to find out more about how we can help you with your finances. Help with work and cancer Whether you’re an employee, a carer, an employer or are self-employed, we can provide support and information to help you manage cancer at work. Visit macmillan.org.uk/work Macmillan’s My Organiser app This free mobile app can help you manage your treatment, from appointment times and contact details, to reminders for when to take your medication. Search ‘My Organiser’ on the Apple App Store or Google Play on your phone. Further information 121 Other useful organisations There are lots of other organisations that can give you information or support. Breakthrough Breast Cancer Weston House, 246 High Holborn, London WC1V 7EX Tel 08080 100 200 Email [email protected] www.breakthrough.org.uk Aims to discover the causes of the disease, find methods of prevention and develop new treatments. Campaigns for policies that support breast cancer research and better services, and promotes breast cancer education and awareness. Breast Cancer Care 5–13 Great Suffolk Street, London SE1 0NS Helpline 0808 800 6000 (Mon–Fri, 9am–5pm, Sat, 9am–2pm) Textphone 0808 800 6001 Email [email protected] www.breastcancercare. org.uk Provides information, publications, practical assistance and emotional support for anyone affected by breast cancer. Specialist breast care nurses run the helpline. The British Heart Foundation Greater London House, 180 Hampstead Road, London NW1 7AW Tel 0300 330 3311 www.bhf.org.uk Carries out research, provides information and ensures quality care and support for everyone living with heart disease. 122 Understanding breast cancer in men Counselling and emotional support General cancer support organisations British Association for Counselling and Psychotherapy (BACP) BACP House, 15 St John’s Business Park, Lutterworth LE17 4HB Tel 01455 883 300 Email [email protected] www.bacp.co.uk Promotes awareness of counselling and signposts people to appropriate services. You can search for a qualified counsellor at itsgoodtotalk. org.uk Cancer Support Scotland Calman Centre, Gartnaval Complex, 75 Shelley Road, Glasgow G12 0ZE Tel 0141 211 0122 Email info@ cancersupportscotland.org www.cancersupport scotland.org Offers information and support to people affected by cancer. Also runs support groups, and provides counselling and complementary therapies. The College of Sexual and Relationship Therapists COSRT, PO Box 13686, London SW20 9ZH Tel 020 8543 2707 Email [email protected] www.cosrt.org.uk Has a directory of therapists to help members of the public find professional support in their local area. Irish Cancer Society 43–45 Northumberland Road, Dublin 4, Ireland Tel 1800 200 700 (Mon–Thurs, 9am–7pm, Fri, 9am–5pm) Email [email protected] www.cancer.ie Has a freephone cancer helpline staffed by nurses trained in cancer care. You can also chat to a nurse online and use the site’s message board. Further information 123 Maggie’s Centres 1st Floor, One Waterloo Street, Glasgow G2 6AY Tel 0300 123 1801 Email enquiries@ maggiescentres.org www.maggiescentres.org Maggie’s Centres provide information about cancer, benefits advice, and emotional or psychological support. Tenovus Head Office, Gleider House, Ty Glas Road, Cardiff CF14 5BD Tel 0808 808 1010 www.tenovus.org.uk Provides a range of services to people with cancer and their families, including counselling and a freephone helpline. Financial or legal advice and information Benefit Enquiry Line Northern Ireland Tel 0800 220 674 (Mon–Wed and Fri, 9am–5pm, Thu, 10am–5pm) Textphone 0800 243 787 www.nidirect.gov.uk/ money-tax-and-benefits Provides information and advice about disability benefits and carers’ benefits in Northern Ireland. Citizens Advice Provides advice on a variety of issues including financial, legal, housing and employment issues. Details for your local office can be found in the phone book or on one of the following websites: England and Wales www.citizensadvice.org.uk Scotland www.cas.org.uk Northern Ireland www.citizensadvice.co.uk You can also find advice online in a variety of languages at adviceguide.org.uk 124 Understanding breast cancer in men Department for Work and Pensions (DWP) Disability Living Allowance Helpline 0345 712 3456 Textphone 0345 722 4433 Personal Independence Payment Helpline 0345 850 3322 Textphone 0345 601 6677 Carer’s Allowance Unit 0345 608 4321 Textphone 0345 604 5312 www.gov.uk/browse/ benefits Manages state benefits in England, Scotland and Wales. You can apply for benefits and find information online or through its helplines. Personal Finance Society – ‘Find an Adviser’ service 42–48 High Road, South Woodford, London E18 2JP Tel 020 8530 0852 www.findanadviser.org Use the website to find qualified financial advisers in your area. Support for carers Carers UK 20 Great Dover Street, London SE1 4LX Tel (England, Scotland, Wales) 0808 808 7777 Tel (Northern Ireland) 028 9043 9843 (Wed–Thu, 10am–12pm and 2–4pm) Email [email protected] www.carersuk.org Offers information and support to carers across the UK. Can put people in contact with support groups for carers in their area. Advanced cancer and end-of-life care Marie Curie Cancer Care 89 Albert Embankment, London SE1 7TP Tel 0800 716 146 (Mon–Fri, 9am–5.30pm) Email supporter.services@ mariecurie.org.uk www.mariecurie.org.uk Marie Curie nurses provide free end-of-life care to people in their own homes, or in Marie Curie hospices, 24 hours a day, 365 days a year. Your notes and questions 126 Understanding breast cancer in men Disclaimer We make every effort to ensure that the information we provide is accurate and up to date but it should not be relied upon as a substitute for specialist professional advice tailored to your situation. So far as is permitted by law, Macmillan does not accept liability in relation to the use of any information contained in this publication, or third-party information or websites included or referred to in it. Some photographs are of models. Thanks This booklet has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been approved by our Medical Editor, Dr Rebecca Roylance, Consultant Medical Oncologist. With thanks to: Mr Glyn Neades, Consultant Breast Surgeon; Ms Caroline Richardson, Breast Surgeon; Ms Jennifer Rusby, Consultant Oncoplastic Breast Surgeon; Dr Matthew Wallis, Consultant Radiologist; and Dr Robin Wilson, Consultant Radiologist. Thanks also to the people affected by cancer who reviewed this booklet, and those who shared their stories. Sources We’ve listed a sample of the sources used in this publication below. If you’d like further information about the sources we use, please contact us at bookletfeedback@ macmillan.org.uk ESMO Guidelines Working Group. Primary breast cancer: ESMO Clinical Practice 2013. National Institute for Health and Care Excellence (NICE). NICE clinical guideline 80 – Early and localised breast cancer: diagnosis and treatment 2009. National Institute for Health and Care Excellence (NICE). NICE Clinical Guideline 81 – Advanced breast cancer (update): Diagnosis and treatment 2014. National Institute for Health and Care Excellence (NICE). NICE Quality Standards QS12 – Breast cancer quality standard 2011. Scottish Intercollegiate Guidelines Network. SIGN 134 – Treatment of primary breast cancer. A national clinical guideline 2013. WHO. Classification of tumours of the breast. Lyon: International Agency for Research on cancer. 2012. Can you do something to help? We hope this booklet has been useful to you. It’s just one of our many publications that are available free to anyone affected by cancer. They’re produced by our cancer information specialists who, along with our nurses, benefits advisers, campaigners and volunteers, are part of the Macmillan team. When people are facing the toughest fight of their lives, we’re there to support them every step of the way. We want to make sure no one has to go through cancer alone, so we need more people to help us. When the time is right for you, here are some ways in which you can become a part of our team. 5 ways you can someone hElP with cAncer Share your cancer experience Support people living with cancer by telling your story, online, in the media or face to face. Campaign for change We need your help to make sure everyone gets the right support. Take an action, big or small, for better cancer care. Help someone in your community A lift to an appointment. Help with the shopping. Or just a cup of tea and a chat. Could you lend a hand? Raise money Whatever you like doing you can raise money to help. Take part in one of our events or create your own. Give money Big or small, every penny helps. To make a one-off donation see over. Call us to find out more 0300 1000 200 macmillan.org.uk/getinvolved Please fill in your personal details Don’t let the taxman keep your money Mr/Mrs/Miss/Other Do you pay tax? If so, your gift will be worth 25% more to us – at no extra cost to you. All you have to do is tick the box below, and the tax office will give 25p for every pound you give. Name Surname Address Postcode Phone Email Please accept my gift of £ (Please delete as appropriate) I enclose a cheque / postal order / Charity Voucher made payable to Macmillan Cancer Support OR debit my: Visa / MasterCard / CAF Charity Card / Switch / Maestro Card number Valid from Expiry date Issue no Security number I am a UK taxpayer and I would like Macmillan Cancer Support to treat all donations I have made for the four years prior to this year, and all donations I make in the future, as Gift Aid donations, until I notify you otherwise. I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax in each tax year, that is at least equal to the tax that Charities & CASCs I donate to will reclaim on my gifts. I understand that other taxes such as VAT and Council Tax do not qualify and that Macmillan Cancer Support will reclaim 25p of tax on every £1 that I give. Macmillan Cancer Support and our trading companies would like to hold your details in order to contact you about our fundraising, campaigning and services for people affected by cancer. If you would prefer us not to use your details in this way please tick this box. In order to carry out our work we may need to pass your details to agents or partners who act on our behalf. Signature Date // If you’d rather donate online go to macmillan.org.uk/donate # Please cut out this form and return it in an envelope (no stamp required) to: Supporter Donations, Macmillan Cancer Support, FREEPOST LON15851, 89 Albert Embankment, London SE1 7UQ 27530 More than one in three of us will get cancer. For most of us it will be the toughest fight we ever face. And the feelings of isolation and loneliness that so many people experience make it even harder. But you don’t have to go through it alone. The Macmillan team is with you every step of the way. We are the nurses and therapists helping you through treatment. The experts on the end of the phone. The advisers telling you which benefits you’re entitled to. The volunteers giving you a hand with the everyday things. The campaigners improving cancer care. The community there for you online, any time. The supporters who make it all possible. Together, we are all Macmillan Cancer Support. For cancer support every step of the way, call Macmillan on 0808 808 00 00 (Mon–Fri, 9am–8pm) or visit macmillan.org.uk Hard of hearing? Use textphone 0808 808 0121, or Text Relay. Non-English speaker? Interpreters available. Braille and large print versions on request. © Macmillan Cancer Support, June 2015. 3rd edition. MAC11915. Next planned review 2017. Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Printed using sustainable material. Please recycle.