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Diagnosing and treating breast cancer
Contents Introduction
2
Part one – Referral to a breast clinic Breast clinic appointment
Part two – Treating breast cancer Introduction
8
After diagnosis
9
3
Types of breast cancer
What to expect
3
Grade and stage of the cancer
11
Mammogram
4
Further tests
11
Ultrasound scan
5
Discussing treatment options
12
Questions you may want to ask
13
5
The treatment team
14
Further tests
6
Getting your results
7
Standard treatment for breast cancer
Fine needle aspiration cytology (FNAC) and core biopsy
Surgery Additional treatments
9
15 16 23
Chemotherapy
23
Radiotherapy
25
Hormone therapy
26
Monoclonal antibodies
28
Younger women
28
Clinical trials
29
Complementary therapies
29
Fatigue
30
After treatment
31
Finding out more
33
Useful addresses
33
Diagnosing and treating breast cancer
1
Introduction In the UK, breast cancer affects a significant number of Asian women and a small number of Asian men. This booklet is about diagnosing and treating breast cancer. It is divided into two main parts. The information in the first part is for anyone who has been referred to see a specialist at a breast clinic. It tells you what to expect at the clinic and talks about the different tests you may have. You may be feeling very worried and anxious at this stage. We hope the booklet and the CD that goes with it will give you enough information to be able to talk to your GP (local doctor) or breast specialist about any questions or concerns you may have. The second part of the booklet and CD describe the range of treatments you may be offered if you have been diagnosed with breast cancer. We hope the information in this part will enable you to discuss your treatment fully with your doctors, and be aware of some of the side effects that may occur. Although we refer to ‘women’ throughout the booklet, most of the information applies also to men who have been diagnosed with the disease.
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Diagnosing and treating breast cancer
Part one Referral to a breast clinic Breast clinic appointment Once your GP refers you to a breast clinic you can expect to wait between two and ten weeks for an appointment. (Waiting times will vary depending on where you live.) If your GP feels the referral is urgent you will be seen within two weeks of the referral letter being sent. Even if you are referred urgently, it is important to remember that the problem may still turn out not to be breast cancer. You may also be referred to the breast clinic if a problem has been picked up on a routine mammogram (breast x-ray) that you have had as part of the NHS breast screening programme. In this case you will be sent a letter asking you to attend your local breast clinic for further tests.
What to expect A doctor or specialist nurse experienced in diagnosing and treating breast problems will see you first. The breast clinic staff may not all be female but they are all experienced in dealing with breast conditions and will do their best to ensure your privacy and dignity. If you have difficulty understanding English, the breast clinic staff may be able to book an
Diagnosing and treating breast cancer
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interpreter for you. It is best to ring before your appointment and ask them to book someone. The doctor/nurse will ask you about your symptoms. You may be asked to fill in a short form with questions about any family history of breast problems and any medicines you are taking. This will be followed by a breast examination. The doctor/nurse will check both your breasts while you are sitting and when you are lying down. After checking your breasts, they will usually examine the lymph nodes (glands) in your armpits. You may then need to have further tests. These will usually include a mammogram and/or an ultrasound scan followed by fine needle aspiration cytology (FNAC) and/or core biopsy. (See below for more information about these tests.) The breast examination, mammogram/ultrasound and FNAC/core biopsy are known as triple assessment. Sometimes all these tests can be done on your first visit with the results available later that day. This is known as a one-stop clinic. In some hospitals this isn’t possible and you may have to make another appointment for further tests or to get your results. You may have to wait for about a week for your test results. This will vary with each breast clinic.
Mammogram A mammogram is a breast x-ray. The radiographer (expert in taking breast x-rays) will ask you to undress to the waist and stand in front of the mammography machine. She or he will then rest each breast in turn between two x-ray plates so that
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Diagnosing and treating breast cancer
it is compressed and flattened. Two images of each breast will be taken so that it can be seen from two different angles. Some women may find this uncomfortable or even painful, but it only lasts a few seconds. Mammograms are usually only done on women over the age of 35, as younger women’s breast tissue is generally too dense to produce a good image.
Ultrasound scan An ultrasound scan uses high-frequency sound waves to produce an image of the breast. You will be asked to lie on a couch with your arm above your head. Some gel will be spread on your breast and a scanning probe will be moved around it. This is the same technique used to look at babies in the womb during pregnancy. An ultrasound scan is painless and only takes a few minutes to do. This is more suitable for women under the age of 35. Regardless of age, sometimes an ultrasound scan may be done as well as a mammogram when there is an area on the x-ray that needs to be looked at more closely.
Fine needle aspiration cytology (FNAC) and core biopsy If a lump or an abnormal area is found a sample will be taken. This can be a fine needle aspiration (FNAC) or a core biopsy. Both these tests can be done with or without using ultrasound for guidance.
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FNAC FNAC is where cells are drawn off using a fine needle and syringe. The sample is then sent to the laboratory where it is looked at under a microscope. The specialist will use the result to help decide what further tests or treatments are needed.
Core biopsy A core biopsy uses a larger needle to obtain a sample of tissue. The specialist may take several samples at the same time. The tissue samples are sent to the laboratory where they are looked at under the microscope to confirm a diagnosis. You will be given a local anaesthetic to numb the area. Once this wears off you will probably find that your breast aches and it may also be bruised. You may need to take painkillers if the area is tender or painful.
Further tests A triple assessment is usually all that is needed to make a diagnosis but sometimes you may need further tests. You can call Breast Cancer Care’s helpline (using an interpreter if you like) to find out more about any tests you may be having.
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Diagnosing and treating breast cancer
Getting your results It may be a good idea to have another adult with you when you get your results. That way you can be sure of support if you need it. If your results show that you have cancer you may feel all sorts of emotions such as fear, anger and helplessness, and you may find it hard to take in what you are being told. Having someone with you who can listen carefully or ask questions can be very helpful. You will also be put in contact with a breast care nurse who will talk to you about your diagnosis and treatment. Information can help you understand what is happening. As well as reading this booklet or listening to the CD that goes with it, you might find it helpful to call Breast Cancer Care’s helpline and talk in your own language to a nurse or someone who has had breast cancer.
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Part two Treating breast cancer Introduction Breast cancer is not one single disease. There are several types of breast cancer. It can be found at different stages of development and can grow at different rates. But having breast cancer doesn’t automatically mean that you are going to die. It is difficult to predict what course the disease will take and what treatment you will have. Factors such as your age and your general health will all be considered by your specialists when they are working out the best treatment for you. This may involve surgery, chemotherapy, radiotherapy or hormone therapy, either given alone or in any combination or order. You will see that we refer throughout the booklet to ‘your doctors’. This is because it is recommended that breast cancer treatment is carried out by different specialists who work together as a team (see page 14). So it is important that your GP refers you to a specialist breast unit from the start. If your local hospital doesn’t have such a complete team of specialists you can ask to be referred to a specialist breast unit elsewhere. Most hospitals have a breast care nurse who is a very important member of the team. There should be opportunities for you to discuss your treatment options with the breast care nurse or your doctors, and to raise any issues
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Diagnosing and treating breast cancer
or concerns. If you need an interpreter the hospital should provide one. Or you can take along a family member or friend to translate for you. You can also ring our free helpline to get up-to-date information and support from our specially trained team, using an interpreter if you want to talk in your own language. They won’t tell you what to do, but they will help you consider your options and suggest questions you may want to take back to your doctors. Similarly, during and after treatment our helpline team is there to discuss any concerns you may have.
After diagnosis Once you have been diagnosed with breast cancer, your doctors will discuss your treatment options with you and prepare a treatment plan. The plan will be based on the results of the tests you had when you were being diagnosed (see page 4).
Types of breast cancer There are two main types of breast cancer – non-invasive cancer and invasive cancer.
Non-invasive cancer This means there are cancer cells in your breast tissue that are growing and dividing abnormally. They are only in the breast ducts (milk ducts) or lobules in the breast and have not spread into the surrounding breast tissue or to other parts of the body. Some doctors may describe it to you as a non-invasive (non-spreading) cancer while others may call it a pre-cancerous condition. These conditions are called DCIS (ductal carcinoma in situ) and LCIS (lobular carcinoma in situ). Diagnosing and treating breast cancer
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Invasive cancer This is what is generally meant by the term ‘breast cancer’. With invasive cancer, the cancer cells are no longer confined to the breast ducts or lobules. They have spread to the surrounding breast tissue and have the potential to spread to other parts of the body. If you have invasive breast cancer it doesn’t automatically mean the cancer has or will spread, just that it could spread.
Lobules
Ducts Lobular carcinoma in situ (LCIS)
Invasive lobular carcinoma
Ductal carcinoma in situ (DCIS)
Invasive ductal carcinoma
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Diagnosing and treating breast cancer
Grade and stage of the cancer The cancer cells’ potential to spread is measured by looking at them under a microscope. This is known as grading. Breast cancer is graded 1, 2 or 3. In general, a lower grade (1) means a slower-growing cancer while a higher grade (3) means a faster-growing cancer. The extent of the spread of a cancer and the size of a tumour is known as the stage of the disease. There are different ways of describing staging so if you want to know more about the stage of your cancer, ask your specialist to explain it to you.
Further tests Further tests may be done to find out more about your particular cancer and to help make sure you get the most suitable treatment.
Hormone receptor test This test is now routinely carried out on the cancer cells after surgery. It is done to find out whether a cancer is sensitive to oestrogen and progesterone (female hormones) in the body. If the test result is positive it means that hormone therapy may be particularly helpful in preventing the cancer coming back. (Hormone therapy is explained on page 26.)
HER2 test Some breast cancer cells divide and grow when a protein called human epidermal growth factor attaches to another protein called HER2 that is found on the surface of breast cancer cells. Approximately 25 per cent of people with breast cancer have an increased amount of HER2 protein (known as HER2 positive breast cancer).
Diagnosing and treating breast cancer
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If your cancer is HER2 positive it may respond to drugs called monoclonal antibodies (see page 28). There are various tests to measure HER2 levels and national guidance states that all women with primary breast cancer should have their HER2 levels tested.
Staging tests If your cancer is a high grade, or if it has affected the lymph nodes in your armpit, you may have other tests to check that the cancer hasn’t spread to other parts of the body. Your doctors or breast care nurse will explain what these tests are for and what will happen.
Discussing treatment options Once your doctors have all the information together they will consider the best treatment for you. This is the point where you can decide how much, or how little, involvement you want. Everyone is different. Some women want to know everything they can about their disease and expect to be fully involved in making decisions about their treatment. Others may want to be well informed about what is going on but are happy to leave the treatment choices to their doctors. Some may want to know as little as possible and leave all the decisions to the specialists. Whatever you decide, you don’t have to be rushed into treatment. A few extra days to think about what you really want, and a chance to discuss your options with your husband, family, friends or GP will make no difference.
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Diagnosing and treating breast cancer
Questions you may want to ask You will probably have some questions and you should feel free to ask for as much information as you feel you need. Questions might include: • • • • • •
Why is this the best treatment for me? Are there any other options? What are the possible side effects? Are there any long-term implications for me? How will these treatments impact on my everyday life? Where will I need to go for these treatments? Will I have to travel far?
Your specialist team will be able to explain anything you don’t understand. Breast Cancer Care’s helpline staff can also talk to you about your proposed treatment, using an interpreter who speaks your own language if you wish. They may also be able to put you in touch with a Breast Cancer Care volunteer who speaks your language and has had breast cancer. You don’t have to accept the advice you are offered, but remember that the treatment recommended to you is the best option in the opinion of the treatment team. Think about it carefully and talk it over with other people if you feel this would help. Take as much time as you need before making a decision.
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Asking for a second opinion You can ask for a second opinion at any stage and this shouldn’t be a problem. You can either ask your GP or your current specialist to refer you to another consultant. It is important to remember that the second opinion may not be different from the one you have already had. The time taken to get a second opinion should make no difference to the outcome of your treatment.
Declining treatment Very occasionally someone may consider not having any treatment. This may be because they think the treatment will do them no good or that it will seriously affect their quality of life, or they may simply be scared. Even if you think you don’t want to accept one, or all, of the treatments being offered, do consider the alternatives carefully before making a final decision. Breast Cancer Care’s helpline staff can discuss your options and refer you to other organisations and sources of information and help.
The treatment team The specialist team in a breast unit will usually include: • • • •
consultant surgeon consultant medical oncologist (cancer drug specialist) consultant clinical oncologist (radiotherapy specialist) consultant radiologist (specialist in diagnosing disease through x-rays and scans) • breast care nurse (trained to give information and support to anyone diagnosed with breast cancer) • chemotherapy nurse (trained to give anti-cancer drugs)
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Diagnosing and treating breast cancer
• consultant histopathologist/cytologist (specialist in analysing tissue and cells under the microscope) • diagnostic radiographer (trained to do x-rays and scans) • therapy radiographer (trained to give radiotherapy treatment). You will see several members of the specialist team at different times during your treatment. Other professionals may also contribute to your care, such as psychologists, plastic surgeons, physiotherapists and pharmacists.
Standard treatment for breast cancer If non-invasive cancer is not treated it may develop into invasive cancer. So treatment for non-invasive cancer aims to stop the cancer developing the ability to spread. There is no single approach suitable for everyone with non-invasive cancer. Your treatment will depend on factors such as the extent of the non-invasive cancer, the grade and where it is. It is possible for invasive cancer to be present too, which will also affect the treatment you are offered. For invasive cancer, treatment aims to: • remove the cancerous area in the breast and any affected lymph nodes in the armpit; and • destroy any cancerous cells that may have already spread from the breast into your body.
Diagnosing and treating breast cancer
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Surgery Surgery is usually the first treatment for most women with breast cancer. In some cases chemotherapy or hormone therapy may be offered first to shrink the tumour so that surgery can be less extensive. This is called neo-adjuvant treatment.
Types of operation There are two main types: • Breast-conserving surgery. This can range from lumpectomy or wide local excision (where the tumour is removed with a small amount of surrounding tissue) to quadrantectomy (where approximately a quarter of the breast is removed). It is sometimes also called a partial mastectomy. • Mastectomy. This is where all breast tissue is removed, including the nipple. A simple mastectomy means the entire breast is removed but the lymph nodes and muscles underneath the breast are not affected. A modified radical mastectomy means the whole breast is removed together with some of the lymph nodes in the armpit. Occasionally, one of the small muscles on the chest wall is also removed. Some women also have a breast reconstruction at the same time (see page 19). For non-invasive cancer (and sometimes invasive cancer) breast-conserving surgery followed by radiotherapy is often sufficient treatment. Sometimes a mastectomy is necessary. Your doctors will explain why they think a particular treatment is best for you. For invasive cancer it is usually recommended that some or all of the lymph nodes in the armpit are removed.
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Diagnosing and treating breast cancer
Lumpectomy or wide local excision
Simple mastectomy
Quadrantectomy
Modified radical mastectomy
Diagnosing and treating breast cancer
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Checking the lymph nodes With invasive cancer it is important for your doctors to find out whether the cancer has spread to the lymph nodes in your armpit because this will influence your further treatment. The number of lymph nodes removed will vary depending on the practice of your surgeon. There are approximately 20 lymph nodes in the armpit. Either some of them can be removed (between four and ten) and checked or all of them can be removed. There is a new way of checking the lymph nodes called sentinel node biopsy. It uses radioactive material and coloured dye to see whether any lymph nodes have been affected. As surgeons have to be specially trained to use this technique it is not yet available in all breast units. You can ask whether it is available in your hospital and whether it is suitable for you.
Which operation? One of the first big decisions you may have to make may be the type of operation you have. You may find it helpful to talk through your choices with your breast care nurse and discuss how each might affect you. Some women will be offered a choice between breast-conserving surgery and a mastectomy. More than half of early stage breast cancers can now be treated by breast-conserving surgery, usually followed by radiotherapy. Studies show that long-term survival is the same for breast-conserving surgery followed by radiotherapy as for mastectomy.
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Diagnosing and treating breast cancer
The type of breast-conserving surgery you have will be based on the type of cancer, the size of the tumour, where it is in the breast and how much surrounding tissue needs to be removed. It will also depend on how large your breasts are. The surgeon will want to give you the most effective surgery as well as the best cosmetic result possible. That means conserving as much as possible of your breast while minimising the risk of the cancer coming back. There are times when the surgeon will have good reasons for recommending a mastectomy. It can be the better option when: • the breast is small and the remaining tissue would look misshapen after breast-conserving surgery • the cancer occupies a large area of the breast • there is more than one area of cancer in the breast • the tumour is in the centre of the breast or directly behind the nipple.
Reconstruction The aim of breast reconstruction is to make a breast that looks and feels as much like the natural breast as possible. If you are going to have a mastectomy you will usually be offered a breast reconstruction, either at the same time or later on. This will depend partly on the type of breast cancer you have and any future treatment you may need. If you prefer to wait a while and see how you feel after surgery, then tell your specialist. Some women decide later that they would like to have a reconstruction. Others find that they become used to living without a breast and wearing a prosthesis (a false breast shape that fits inside the bra) and eventually decide against a reconstruction.
Diagnosing and treating breast cancer
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Reconstruction is major surgery and should be considered carefully. There are different types of reconstructive surgery and many issues to consider. You can discuss the details with the surgeon who is going to do the operation and ask to see photographs of the operations she or he has done. You might like to talk it over with your breast care nurse or ask to meet a woman who has had the same type of reconstruction.
Breast prostheses If you have a mastectomy and don’t have a reconstruction you may want to wear a prosthesis. On the NHS you are entitled to both a temporary and a permanent prosthesis without having to pay for them. Your breast care nurse, ward nurse or the hospital’s appliance officer can fit you with a temporary prosthesis before you go home after surgery. Later you can choose and be fitted with a permanent prosthesis. (You should have a choice of different prostheses, including ones that match your skin colour.)
After your surgery Everyone reacts differently but the symptoms described here are very common. For instance, some women feel sick after their operation. This is due to the anaesthetic and should pass within a day or two. (If you know anaesthetics make you sick tell the anaesthetist first as extra anti-sickness drugs can be given.) You will probably have wound drains put in during the operation. These plastic tubes drain blood and fluid away from the wound into a bottle. The drains will stay in for a few days then be removed by a nurse. You can walk around and move quite normally with the drains in.
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Diagnosing and treating breast cancer
Some people may have pins and needles, burning, numbness or darting sensations in the chest area and down the arm on the operated side. This is quite common and can go on for weeks or even months. The scar may feel tight and tender. While this lasts you may not be able to wear a bra or anything that puts pressure on the area. As it becomes less sensitive you may choose to wear a lightweight prosthesis to help restore your shape until your scar heals completely. If you have had breast-conserving surgery you may find it more comfortable to wear a supportive bra, even in bed at night. Your arm and shoulder on the operated side are likely to feel stiff and sore for some weeks. Your breast care nurse, surgeon or physiotherapist will give you exercises to help you regain full movement. This is part of the healing process which you should continue after you go home. If doing the exercises is painful, painkillers may help. If you have radiotherapy it is important to continue these exercises in a modified form, probably for at least two years. You can also get a poster/booklet from Breast Cancer Care called Exercises after breast surgery.
Lymphoedema Surgery to remove some or all of the lymph nodes under your arm may affect your lymphatic system. It can cause a blockage that results in a build-up of fluid in the tissue of your arm. This is called lymphoedema. The risk of lymphoedema is greater the more lymph nodes you have removed. Having radiotherapy to the armpit can have a similar effect.
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If you notice any swelling of the hand or arm on the affected side, tell your specialist or breast care nurse as soon as possible, however trivial it may seem at the time. This can happen months, or even years, after treatment. You may reduce your risk of developing lymphoedema by taking some precautions, such as avoiding scratching or cutting your hand and arm on the affected side. If possible, avoid having your blood pressure or blood samples taken from your affected arm.
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Diagnosing and treating breast cancer
Additional treatments Depending on the grade and stage of your cancer (see page 11), you may need further treatment after your surgery. This may include chemotherapy, radiotherapy and hormone therapy or a monoclonal antibody. Your specialist may advise you to have one or all of these treatments.
Chemotherapy Chemotherapy treats the whole body with a combination of anti-cancer drugs. The aim is to destroy cancer cells that may have spread from the breast into the bloodstream. The drugs may be given by injection into a vein, a drip or as tablets.
Why Chemotherapy may be offered to you depending on different factors, for example your age, your general health and the grade and stage of your cancer.
When You are most likely to be given chemotherapy after your surgery but before radiotherapy, although sometimes it may be the other way round. In some cases, women may be given chemotherapy before surgery to try to shrink large tumours, or if the tumour seems to be growing very fast.
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What happens You will usually be given chemotherapy by a specialist chemotherapy nurse as an outpatient. You receive a course of drugs every three or four weeks for a specified period.
Side effects Some women have few side effects from chemotherapy while others may not be so fortunate. Drugs have different effects and the same dosage and combination can affect women quite differently. Mouth ulcers, feeling sick, tiredness, vomiting and hair loss are some of the more common side effects. Some of these side effects can be minimised. For instance, you can be given drugs to control the sickness and vomiting. You may be offered a ‘cold cap’ to wear before and during your treatment to help reduce hair loss. (A cold cap reduces the blood flow to the hair follicles, which means that the amount of drugs that reaches the hair follicles is also reduced.) Chemotherapy can affect the healthy blood cells, making you more prone to infections and anaemia (low red blood cells). This is why you will be given a blood test before each treatment. Tell your specialist or chemotherapy nurse about any side effects you have as they may be able to change the dose or combination of drugs, or give you drugs to control the side effects.
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Diagnosing and treating breast cancer
Radiotherapy This uses radiation in small doses to destroy cancer cells that may remain in and around the breast area after surgery.
Why Radiotherapy is usually recommended after any type of breast-conserving surgery to reduce the risk of the cancer coming back in the same breast. It is also sometimes given after a mastectomy. It may be given to the armpit if some lymph nodes have been removed and are affected. It will not usually be given to the armpit if all the lymph nodes have been removed.
When Your treatment will usually start a few weeks after your operation, giving you time to recover from your surgery. Treatment plans vary but generally you will have to go to the hospital for radiotherapy each day, usually five days a week for three to six weeks. It is important not to miss your appointments but you can ask for a time that suits you, for example if you have family commitments or are working.
What happens Before your radiotherapy begins your specialist or radiographer will explain the treatment, why you are having it, how it will be done and what your treatment plan will be. You will then spend some time in a simulator unit where the radiographer will measure the area to be treated and draw lines around it so that exactly the same area is treated each time. These lines are not permanent, so try to keep the skin in
Diagnosing and treating breast cancer
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that area dry during your treatment. Alternatively, if you agree, the area might be marked with a permanent pinprick tattoo.
Short-term side effects Everyone is different, but a common side effect of radiotherapy is a skin reaction: a change in skin colour, itching, soreness or tenderness. The radiotherapy staff will advise you on how to take care of your skin according to the type of reaction you have. You may feel extremely tired towards the end of the course of treatment. This feeling of fatigue is common and can last for months, so be kind to yourself and try to ease up on your commitments. Regular exercise such as a daily walk can help with fatigue. See page 30 for more information about fatigue.
Long-term side effects In the long term, some women may develop lymphoedema (see page 21). Other problems can appear years later because of radiation damage to the tissues, nerves or bones, although with modern treatment this is rare.
Hormone therapy Some breast cancer cells are stimulated to grow by the hormones oestrogen and progesterone. So a hormone receptor test is now done routinely after surgery to find out whether your breast cancer is sensitive to these hormones (see page 11). If it is positive it means that you may be offered hormone therapy, which stops the hormones from stimulating the growth of breast cancer cells.
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Diagnosing and treating breast cancer
Why If you have a hormone-sensitive cancer, hormone therapy can help stop the cancer from coming back.
When Hormone therapy usually starts after surgery. If you are also having chemotherapy it will probably start once this is finished. Sometimes people are given hormone therapy before surgery to try to shrink larger tumours.
What happens There are several different types of hormone therapy drugs and your specialist will consider which is the most suitable. You will usually take the drugs for several years.
Side effects Many women have side effects from hormone treatment. These can include menopausal symptoms such as hot flushes, night sweats and mood swings. Some people gain weight or have painful joints. If you are tempted to stop hormone treatment because of side effects, discuss the situation first with your doctors and your breast care nurse, as there may be another drug that suits you better.
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Monoclonal antibodies Monoclonal antibodies are a type of breast cancer drug. The best known of these drugs is Herceptin (trastuzumab). It is used to treat people with primary or secondary breast cancer that is HER2 positive. These types of breast cancer tend to grow faster than ones that are HER2 negative. Herceptin stops one of the ways that breast cancer cells divide and grow by sticking to a protein called HER2 on the surface of the cancer cells. It also helps the body’s immune system to destroy breast cancer cells. If your breast cancer is HER2 positive you should, in most cases, be offered Herceptin to reduce the chances of the breast cancer returning or spreading.
Younger women Women who have not reached the menopause when they are diagnosed with breast cancer often have extra concerns when making treatment decisions. Uncertainty over fertility, new relationships, family life and career opportunities may all have an impact. Take time to think about what you want, now and in the future. Only you can decide on the treatment that is right for you. Your breast care team are there to support you, and Breast Cancer Care’s helpline staff can also help you discuss your options, in your own language if you prefer, and refer you to other sources of information and support.
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Clinical trials Researchers are constantly trying to improve breast cancer treatments. This is why you may be asked to take part in a clinical trial. Clinical trials are studies to find out the best treatment for a particular condition. They may be to test new drugs or other treatments such as types of surgery, varying doses of radiotherapy and differences between treatments. You will not be put on a trial without your knowledge and without giving your informed consent. This means fully understanding the purpose of the trial, why you are considered suitable for it and what it will mean for you. You should be given detailed written information and plenty of time to discuss your options. If you have been asked to take part in a trial and you decide not to, don’t feel guilty or worried that your doctors will treat you differently. You will continue to have treatment and care as before. The decision is entirely up to you.
Complementary therapies Complementary therapies include a wide range of approaches that can be used as well as standard medical treatment. The therapies are mainly gentle and natural and they can have psychological as well as physical benefits. They can often help people with cancer feel more in control of their lives. For example, aromatherapy, shiatsu and other types of gentle massage can be very relaxing. Prayer or meditation may help you cope with emotional stress. Acupuncture can be used to
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ease sickness, pain and tension. Some of these therapies can also help with menopausal symptoms caused by hormone therapy. Always tell your breast care nurse or specialist about any complementary therapy you want to use to make sure it doesn’t affect any other treatment you are having.
Fatigue Fatigue is a common – and perfectly normal – side effect of treatment. People may feel tired or exhausted some or all of the time, often without the energy to complete even simple everyday tasks. Most people get their energy back in six months to a year after treatment, but for some it can be a continuing problem. Fatigue can be very distressing. It can affect your concentration and make you feel angry, anxious and frustrated. If fatigue is affecting your life, do talk to your doctors or breast care nurse as they may be able to help you manage it. And let family and friends know how you are feeling and what they can do to help. You may also find that at least 30 minutes of gentle exercise three times a week reduces fatigue and improves your sleep and your general quality of life.
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After treatment The end of treatment can be a difficult time. After coping with the physical and emotional demands of cancer and its treatment, it may seem a bit of an anticlimax, especially if you expected to feel relieved and happy it’s all over. You and the people close to you will be expecting things to get back to normal. But it may not be easy just to go back to work or to looking after the family as if nothing had happened. Some things may have changed, so don’t feel guilty about taking time to fit back into your old life or adapt to a different role. After treatment you will have time to think about what has happened to you. If there have been permanent changes in the way you look or feel you’ll probably need to grieve for what has been lost. It can take a long time to get used to the changes that have taken place and to adjust to life after breast cancer treatment. Many people worry about whether their cancer will come back. It may take time for you to regain trust in your body, and not to assume that every ache and pain is the cancer returning. Some events may be particularly stressful – the days leading up to your checkups, or finding out that someone you know has cancer. We all deal with such anxieties in our own way, and there are no easy answers. The effects of your breast cancer may continue for many years, but time may also bring a greater understanding of what has happened to you. This perspective may mean that you want to give more time to doing things that are important to you, like spending time with friends and family or treating yourself every now and then.
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As time goes by, breast cancer will no longer be so important in your everyday life but an experience that has shaped you and your outlook. People do manage to look forward, make new plans and resume ones that had to be put on hold. Having breast cancer does change your life. It can have positive and negative effects but many people find that they come through it with a different outlook and a renewed feeling for life. If you would like to discuss any concerns during and after treatment, or would like more information on any of Breast Cancer Care’s services, call our free helpline on 0808 800 6000 (using an interpreter if you want to talk in your own language).
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Finding out more Useful addresses Cancerbackup 3 Bath Place Rivington Street London EC2A 3JR Office: 020 7696 9003 Freephone helpline for cancer information in Urdu: 0808 800 0140 Freephone helpline (for cancer information in any language): 0808 800 1234 Email:
[email protected] Website: www.cancerbackup.org.uk Cancerbackup is the leading national information and support charity for people affected by cancer. Services include a helpline staffed by specialist cancer information nurses, a website, cancer information booklets and local information centres. All Cancerbackup services are free to people affected by cancer.
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Macmillan Cancer Support 89 Albert Embankment London SE1 7UQ Telephone: 020 7840 7840 Macmillan CancerLine: 0808 808 2020 Textphone: 0808 808 0121 Email:
[email protected] Website: www.macmillan.org.uk Macmillan Cancer Support is helping people who are living with cancer through the provision of immediate practical and emotional support. Specialist services include Macmillan nurses and doctors, cancer centres, a range of cancer information and direct financial help. The Macmillan CancerLine provides information and emotional support. Textphone available.
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Central Office
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to equal opportunities and access
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ISBN 1 870577 52 3
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© Breast Cancer Care June 2004.
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of this publication may be
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This edition November 2006. All rights are reserved. No part reproduced, stored or transmitted, in any form or by any means, without the prior permission of the publishers. Illustrations © Alexa Rutherford Design SMD Design Urdu translation and typesetting Newcom UK Ltd Print Cavendish Press Ltd
For all breast cancer or breast health concerns, call our free, national helpline on 0808 800 6000 (textphone 0808 800 6001) or visit www.breastcancercare.org.uk.
Breast Cancer Care relies on donations from the public to provide its services free to clients. If you would like to make a donation, please send your cheque to: Breast Cancer Care, Freepost Lon 644, London SW6 4BR. Or donate online via our secure site at: www.breastcancercare.org.uk.
Breast Cancer Care is the UK’s leading provider of information, practical assistance and emotional support for anyone affected by breast cancer. Every year we respond to over two million requests for support and information about breast cancer or breast health concerns. All our services are free. We are committed to campaigning for better treatment and support for people with breast cancer and their families. If you have any breast cancer or breast health concerns you can talk to someone in English or in your own language by calling our helpline on 0808 800 6000 (textphone for deaf callers 0808 800 6001). Calls may be monitored for training purposes. Confidentiality is maintained between callers and Breast Cancer Care. A large print version of this booklet can be downloaded from our website, www.breastcancercare.org.uk. It is also available in Braille on request. Call 020 7384 4629 for more information.