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Information for Women Considering Preventative Mastectomy

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Information for Women Considering Preventative Mastectomy INFORMATION FOR WOMEN CONSIDERING PREVENTIVE MASTECTOMY INFORMATION BECAUSE OF A STRONG FAMILY HISTORY OF BREAST CANCER Developed by the Hereditary Cancer Clinic, Prince of Wales Hospital and the Centre for Genetics Education, NSW Health, Royal North Shore Hospital, Sydney, NSW 1 This booklet was developed and printed with the support of the: Hereditary Cancer Clinic, Prince of Wales Hospital CONTENTS Centre for Genetics Education, NSW Health, Royal North Shore Hospital Cancer Council NSW Previous print: April 2003; 2008 Current print: April 2012 2 CC mastectomy booklet[V8].indd 2 22/10/08 8:40:25 PM Contents 04 Introduction 05 Booklet aims 06 Options for women with a strong family history ? 08 What does preventive mastectomy surgery involve CONTENTS 11 Can breast cancer risk be reduced or eliminated? 15 Breast reconstruction 17 Advantages and disadvantages 18 Cost and other factors 19 Additional information 20 Hospital stay and recovery 21 Possible complications 23 Making the decision 25 The reactions of family and friends 26 After the mastectomy 27 Sexuality 28 Where you can get information and support 29 Contact details 33 More information 34 References 35 Acknowledgements 37 Questions and notes This booklet was originally developed and produced with support from the National Breast Cancer Centre. The 2008 update was funded by a Strategic Research Partnership Grant from Cancer Council NSW. 3 CC mastectomy booklet[V8].indd 3 22/10/08 8:40:25 PM INTRODUCTION This booklet is intended for women with a strong family history of breast cancer who may be considering the option of surgical removal of their breasts as a way of reducing their risk of developing breast cancer. This type of surgery is known as preventive or prophylactic mastectomy. If this is you, this booklet presumes that you have already attended a family cancer service (or other genetic counselling service), breast INTRODUCTION surgeon or oncologist to discuss in detail your breast cancer risk and the options that may help you reduce your risk. If you haven’t already done so, you will need to have your risk assessed to see if the information provided in this booklet applies to you. There are some contact details for services that may be useful to you in the back of the booklet (see pages 29 to 33). Preventive mastectomy (see page 8) is not particularly common. There are many issues to be considered and the reasons for making any decision will be different, depending on each woman’s situation. You may want to discuss your situation with any or all of the following: • Your family doctor • Family cancer service or other genetic counselling service • Breast surgeon • Psychiatrist and/or clinical psychologist • Support person, such as a friend or family member. 4 CC mastectomy booklet[V8].indd 4 22/10/08 8:40:25 PM We hope this booklet will help answer some of the questions you may have about preventive mastectomy. This booklet also aims to help you develop a list of questions to ask the different health professionals you talk to when considering the surgery. It is not intended to replace seeing them. Remember, talking to a doctor about preventive mastectomy does not mean you have to go ahead with the surgery. INTRODUCTION The booklet aims to: • Provide information about preventive mastectomy. • Explain what the surgery might involve and how it might affect you. • Discuss your options following surgery, such as reconstruction. • Explore some of the feelings you might be experiencing. • List some of the services available to help you. • Help in your decision making. There are many things for you to consider if you are thinking of having preventive mastectomy. You may fi nd it helpful to keep a notebook handy to jot down questions you would like to ask professionals as well as their answers. The important thing to remember about preventive mastectomy is that there are advantages and disadvantages to the surgery. It is your choice whether or not you have the surgery. The decision is yours to make when you feel ready to make it. 5 CC mastectomy booklet[V8].indd 5 22/10/08 8:40:26 PM Options for women with a strong family history of breast cancer There are a number of options for women at increased risk of developing breast cancer and these should be taken into account when considering whether or not to have preventive mastectomy: • Doctors suggest limiting alcohol consumption, avoiding hormones such as those found in hormone replacement therapy (HRT) and the oral contraceptive pill, and eating a diet low in fat and high in vegetables. INTRODUCTION • Regular breast examinations, mammography (with or without breast ultrasound) and breast Magnetic Resonance Imaging (MRI) may be benefi cial for women at high risk of breast cancer, as they can help to detect breast cancer at an early stage — though they don’t prevent it. It’s important to be aware that most breast cancers found at an early stage have a good outcome. The usual surgical treatment when breast cancer is detected early is removal of the lump (lumpectomy) so that the breast is conserved. • If you are post-menopausal, it may be possible for you to take part in an international trial called IBIS II using the drug anastrozole. This study is being done to fi nd out if anastrozole can help prevent breast cancer in women who are at increased risk of breast cancer. You should discuss with your doctor the benefi ts and disadvantages of taking part in this study. Alternatively, you can call the toll free number 1800 640 709 for more information. • You may wish to consider having a preventive mastectomy. Women who learn that they have inherited a faulty gene that increases their risk of developing breast cancer might be particularly interested in this option. 6 CC mastectomy booklet[V8].indd 6 22/10/08 8:40:26 PM Why do some women with a strong family history of breast cancer consider preventive mastectomy? In addition to a strong family history of breast cancer, there may be other factors infl uencing a woman’s decision about preventive mastectomy. These may include: • Having an inherited change identifi ed in one of the breast cancer INTRODUCTION protection genes (BRCA1 or BRCA2) that makes the gene faulty. Being born with these faulty genes means the woman has an increased risk of developing breast cancer. • Having already had breast cancer in one breast and being concerned about the risk of cancer occurring in the other breast. • Having multiple breast biopsies, which may increase anxiety about breast cancer risk. Sometimes this tissue is benign but it may suggest an increased risk of breast cancer. It is important to discuss with your surgeon what the biopsy fi ndings mean for you. • A woman’s anxiety about breast cancer. Anxiety about developing breast cancer can have a major impact on day-to-day living, particularly for women who have an increased risk of developing cancer because of their family history. It is important for you to talk about your breast cancer anxiety with an appropriate professional (such as a clinical psychologist or psychiatrist) before making a fi nal decision about whether or not to undergo preventive mastectomy. Making a decision about preventive mastectomy can be a diffi cult process. That’s why some clinicians and surgeons routinely require women who are considering the surgery to consult a clinical psychologist or psychiatrist to support them during the decision-making process. The choice to have preventive mastectomy is a very personal one; the right decision for one woman may not be right for another. 7 CC mastectomy booklet[V8].indd 7 22/10/08 8:40:26 PM WHAT DOES PREVENTIVE MASTECTOMY SURGERY INVOLVE? Preventive mastectomy involves the removal of breast tissue before a breast cancer has occurred in an effort to prevent breast cancer. In a MASTECTOMY SURGERY very small percentage of women who undergo this surgery, breast cancer is found at the time of surgery or when the tissue is sent to pathology. When deciding whether preventive mastectomy is right for you, it is important to know what’s involved. Talking to a breast surgeon and reconstructive surgeon about your particular situation is the best way of fi nding out what the surgery may involve and what it means for you. Talking to these surgeons does not mean you have to go ahead with the surgery. Before fi nding out more about preventive mastectomy, you may fi nd it helpful to review the anatomy of the breast (see diagram, right). Usually organs in the body such as the kidneys and heart are contained in a ‘capsule’ that separates the organ tissue from the rest of the body. This is not the case with the breast. Breast tissue blends into surrounding body tissue, which makes it diffi cult to distinguish between where the breast ends and the surrounding tissue begins. This is particularly true in the lower part of the breast and in the part of the breast that extends into the armpit (called the axillary tail). 8 CC mastectomy booklet[V8].indd 8 22/10/08 8:40:26 PM Fatty tissue Lobules MASTECTOMY SURGERY Milk ducts Muscle Nipple Ribs Illustration: Greg Smith/Cancer Council NSW It is possible to remove nearly all the breast tissue in most post- menopausal women, because they tend to have a moderate amount of fat between their skin and breast tissue. It is more diffi cult however, to remove all the breast tissue in younger women where there may not be as much fat between the skin and the breast tissue. Surgeons use different approaches when performing preventive mastectomy.
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