The Role of Risk Reducing Mastectomy in Hereditary Breast Cancer

This information section is to help explain what is involved with a risk reducing (prophylactic) mastectomy. You may be considering this because you have an increased risk of developing breast cancer due to your family history, or because you have been found to carry a genetic fault. (BRCA1, BRCA2, p53, PTEN, CDH1,). This surgery has been shown by multiple studies to be effective in preventing breast cancers.

This decision can be difficult to make but there will be healthcare professionals in our team that you can discuss issues with and who will be able to support you in your decision-making.

Definition of Risk Reducing Mastectomy
This is an operation where both your breasts are removed whilst there is no evidence of cancer, to help reduce your risk of developing breast cancer.

What does the surgery involve?
In this surgery the surgeon will remove both your breasts. How this is done depends on whether or not you wish to have reconstruction and when you want that reconstruction done (at the same time as the removal of the breast tissue or at a later date).

Bilateral risk-reducing mastectomy involves the removal of breast tissue on both sides. This may include removing the breast skin and nipples (total mastectomy) or it may involve removing as much breast tissue as possible whilst leaving the breast skin and sometimes the nipples intact (skin-sparing or nipple-sparing mastectomy). Skin-sparing mastectomies allow for more natural-appearing breasts if a woman chooses to have breast reconstruction. A total mastectomy provides the greatest breast cancer risk reduction as the most breast tissue can be removed with this procedure.

Even with a total mastectomy, not all breast tissue is removed, it is impossible for a surgeon to do this. With either approach, the risk of developing breast cancer is dramatically reduced.

The recovery from this surgery is heavily influenced by whether or not a reconstruction is performed, and the reconstruction type chosen.

Who should consider prophylactic mastectomy?
This procedure is usually offered to women with a significant risk of breast and ovarian cancer due to an inherited mutation in a gene known to be associated with an increased risk of breast cancer, such as BRCA1, BRCA2, P53, PTEN and CDH1 genes (genes linked to breast and other cancers)

It may also be offered to you if you have a strong family history of breast cancer but no known genetic alteration that is detected. Sometimes it might be suggested if you have a strong family history but choose not to proceed with genetic testing.

How much does a Risk Reducing Mastectomy reduce the risk of cancer?
In women with BRCA mutation risk reducing mastectomy will reduce your breast cancer risk by at least 90%.

Individual risk of breast cancer also varies depending on other factors like family history, lifestyle choices and other strategies you are using to reduce your risk of cancer.

When should it be done?
As there are effective screening options available, the timing of risk-reducing mastectomy is based on patient preference.

The most significant risk reduction is associated with surgery which is performed by 40 years.

What are the risks of risk-reducing mastectomy?
From a surgical perspective, the risks or potential harms are related to both the mastectomy and the type of reconstruction chosen. These include things such as bleeding or infection. The surgery is irreversible. Bilateral prophylactic mastectomy can also affect a woman’s psychological well-being due to a change in body image and the loss of normal breast functions. Although most women who choose to have this surgery are satisfied with their decision, they can still experience anxiety and concerns about body image. The most common psychological side effects include difficulties with body appearance, with feelings of femininity, and with sexual relationships. Women who undergo total mastectomies lose nipple sensation, which may hinder sexual arousal.

Women who undergo risk-reducing mastectomy can also have their psychological well-being affected. This is due to changes in body image and the loss of normal breast function. Women who choose this surgery can experience anxiety and concerns related to their body image, even when they are satisfied with their decision. Some of the side effects noted includes challenges with body image, loss of feelings of femininity and impact on sexual relationships. Women will lose nipple sensation and this may impact them to a varying degree.

Are there any other alternatives to Risk Reducing Mastectomy?
Other ways of preventing breast cancer haven’t been proved to reduce risk as much as Risk reducing mastectomy. However, there are effective screening options and medications that have been shown to reduce the risk of breast cancer.

Options include:

• Increased screening for breast cancer including mammography and MRI
• Endocrine treatment with tamoxifen or raloxifene

Who should I see for this surgery?
It is generally recommended that you see a breast surgical oncologist and a plastic and reconstructive surgeon, or a breast surgical oncologist with appropriate reconstructive skills.

The specialist will have the expertise to counsel you appropriately, do the surgery according to the recommended international guidelines.

What questions should you ask your doctor?
The decision to have risk-reducing mastectomy is a challenging and difficult one with no clearly a right or wrong answer. It comes down to a personal choice you alone can make, but advice from a genetic counsellor, a breast surgeon and a reconstructive surgeon can help you make a more informed decision.

Questions to ask your doctor or other health care provider include:

• What is my risk of breast cancer?
• What are my options to lower my risk of breast cancer?
• What are the benefits and risks of each option?
• What are some good sources of information about reducing my cancer risk?
• How much time can I take to research my options and make a decision?
• If I decide that prophylactic mastectomy isn’t right for me right now, can I change my mind later?
• What advice would you give your friend or family member if she were in my situation?

Determining whether Risk-Reducing Mastectomy is right for you, and when it might be right for you depends on your individual risk of cancer and how aggressive you want to be in your cancer-prevention efforts.

We will assist you on that journey with our genetic counsellors, breast specialists, gynaecological oncologists and psychologists.