By making her preventive mastectomy and breast reconstruction public, Angelina Jolie has singlehandedly brought both topics into the limelight. Her decision was based on her hope that other women will benefit from her experience. We take Angelina’s lead as an opportunity to look at the many difficult decisions faced by women like Jolie, and the increasing options opening up for breast cancer survivors and other women who have undergone mastectomies.

The world sat up and took notice when Angelina Jolie wrote an op-ed piece in the New York Times titled “My Medical Choice”. Jolie, whose mother fought cancer for almost a decade and died at age 56, found through genetic testing that she has an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer. Although risk profiles depend on multiple factors and vary for each woman, only a fraction of women—as far as we know—develop breast cancer due to genetic mutations. But those who have the BRCA ‘faulty’ genes, like Angelina Jolie, are at increased risk. Those who have the BRCA1 gene have a 67 percent of getting breast cancer, according to the New York Times article.
Her op-ed article is not only about a preventive double mastectomy. It is also about breast reconstruction. There are reports that she may decide to have her ovaries surgically removed.

Preventive mastectomy

Preventive or prophylactic mastectomy is the removal of one or both healthy breasts to reduce cancer risk. The procedure is also referred to as risk reducing mastectomy. Like Angelina Jolie and Sharon Osbourne, some women opt for preventive mastectomy before they have been diagnosed with cancer. Many women have a healthy breast removed after discovering cancer in only one breast. In the latter group, the affected breast is removed to get rid of cancer; the healthy breast is removed to reduce the likelihood of getting cancer in that breast later on.

A preventive mastectomy is not the right decision for everyone. So who should consider it as a way to reduce breast cancer risk?

According to the Mayo Clinic’s website, women might want to consider prophylactic mastectomy if they have already had cancer in one breast and have a strong family history of breast cancer. A strong family history means a mother, sister or daughter diagnosed with breast cancer before the age of 50. Women who have more than one family member with ovarian or breast cancer face an even higher risk. The predisposition for breast cancer can be passed on from either side of the family.

Genetic testing results identifying high-risk mutations is another reason to consider preventive mastectomy. This is what led Angelina Jolie to make her choice.

Changes that occur in the breasts that increase your risk of breast cancer, undergoing radiation therapy and dense breasts are other reasons that increase your likelihood of breast cancer.

Genetic testing

Having your breasts removed as a preventive measure is a highly personal decision. It should be made after clear thinking based on correct information and weighing the actual risks against the benefits.

Women with a high risk of breast cancer can access the necessary testing through national cancer screening programmes. They are available free of charge for women “for whom there is evidence that the screening test can find a cancer at a stage when treatment is more effective” according to the Cancer Council Australia. The Cancer Council’s web page on genetic testing provides more details.

Direct-to-consumer (DTC) genetic tests are available for purchase in Australia without a doctor’s recommendation. In early 2012 the Australian Medical Association released a position statement on genetic testing, expressing concern about DTC tests. The article said that individuals “might undertake a genetic test without fully understanding and appreciating the purpose and implications of the test”. There was also concern that people who take these tests could end up with “results that are inaccurate, contradictory, misleading, taken out of context and open to misinterpretation”. This is why the AMA “strongly encourages any patients considering using a DTC genetic test to discuss the risks and benefits of such genetic testing with their General Practitioner first”. Those who have already taken such a test are encouraged to discuss the test results with their GP.

The results of genetic tests are based on complicated mathematical models that calculate your lifetime risk of breast cancer and other diseases. Interpreting these results and determining your precise levels of risk requires professional expertise and a thorough understanding of your other, non-inherited, risk factors. Even your GP may not be in a position to help you on this matter. You might need to talk with a specialist.

According to the AMA, if you are in a high-risk category or wish to have a genetic test done, genetic counselling should come before the test. The AMA also recognises that genetic counselling should be offered to those who are considering genetic testing for significant heritable disorders. They recommend pre- and post-test counselling.

Before having your tests done, enquire into the accreditation of the labs performing the test to ensure the quality and accuracy of results. National cancer screening programmes may be your first step in this direction.

Weighing up your options

For those who find they have a high risk of breast cancer, preventive mastectomy is a tough decision to make. High risk is not the same as certainty. An 87 percent chance of developing breast cancer, for example, does not mean you will develop breast cancer. It just shows that you have a high likelihood of getting it.

Preventive mastectomy is not something you should rush into. In 2010, according to a long-running study at Melbourne’s Peter MacCallum Cancer Centre, only 18 per cent of BRCA mutation carriers opted for preventive double mastectomy.

In 2012, the ANZ Journal of Surgery, the journal of the Royal Australasian College of Surgeons, published the results of a study on breast surgeons’ perceptions and attitudes towards preventive mastectomy. Study data showed that surgeons took into consideration both objective risk factors and subjective factors—including patients’ fear and anxiety and their desire for breast symmetry—in recommending breast removal. Fear and anxiety appear to play a major role in the decision process. But for some women who have already been diagnosed with cancer in one breast, a preventive mastectomy is a step too far.

According to data from a University of Michigan study presented at the American Society for Clinical Oncology’s 2012 Quality Care Symposium, women diagnosed with breast cancer in one breast do not necessarily need to have the other breast removed. The study, which surveyed 1,525 women diagnosed with breast cancer soon after diagnosis and four years later, found that

• 1,446 women had not had a recurrence of breast cancer in the time between surveys.
• Just over a third of the women (35%) considered removing the unaffected breast, but only 7.4 percent went through with the removal surgery.
• Among those who received a mastectomy in the affected breast, 53 percent thought about removal of the other breast, but only 19 percent had undergone the procedure by the time of survey.
• Nine out of ten among the women who had healthy breasts removed after cancer diagnosis in one breast reported being very worried about recurrence when making their treatment decision.

Here’s the alarming piece of news: According to the researchers, about 70 percent of women who had a preventive mastectomy on the unaffected breast were “clinically at very low risk” of developing cancer in the other breast.

Mere genetic test results and the risk percentages given cannot tell you whether or not to opt for preventive mastectomy. This is why receiving the right advice and knowing as much as you can about your specific risk is important. According to Associate Professor Phillips of the Australian Cancer Council, it is very important that the risk a woman faces be thoroughly assessed. Family cancer centres are the places to go because they specifically focus on the risk of breast cancer. She told The Australian, “We have all seen women who . . . have had breasts removed when the risk wasn’t particularly high, or who have had their breasts off without themselves being tested for the mutation.”

Other ways of reducing risk

It is true that nothing reduces your risk levels of breast cancer so much as having your breasts removed. Preventive mastectomy can reduce your risk of breast cancer by as much as 90 percent. Unfortunately, even after breast removal surgery a few women—about one in ten—will end up with breast cancer due to leftover breast tissue in the armpits, above the collarbone and in the upper part of the abdomen.

There are a number of options that allow women to reduce their levels of risk significantly without surgery. Key options for early detection and risk reduction include breast cancer screening, risk-reducing medications and removal of ovaries. Lifestyle changes can also reduce levels of risk.

Breast cancer screening is done though mammograms and magnetic resonance imaging (MRI). Breast self-exams and clinical breast exams by a doctor are also part of the screening process. Early detection is important with breast cancer.

Medications such as tamoxifin can reduce breast cancer risk by blocking the effects of estrogen.  The downside is their undesirable side effects. Very few Australian women are using these medications to reduce their breast cancer risk. According to The Australian, “only 0.3 per cent of women at high risk either from a family history or a known BRCA mutation were using drugs such as tamoxifen or raloxifene, despite good evidence they cut the risk by about 40 per cent”.

Women with BRCA gene mutations are at high risk of cancer in the ovaries as well as breast cancer.  Preventive ovarian surgery or prophylactic oophorectomy can reduce the risk of both kinds of cancer. Removing the ovaries can reduce the risk of breast cancer by as much as 50 percent in some high-risk women.

Lifestyle changes, such as being at a healthy weight, exercising most days and limiting alcohol consumption, can reduce cancer risk. Avoiding hormone therapy after menopause also reduces risk. It is not exactly clear, however, how much such lifestyle changes can reduce risk in women who already have a high risk of breast cancer.

The risk level you can live with is up to you

At present, although preventive mastectomy is the gold standard for preventing breast cancer, preventive mastectomy is not for everyone. It can affect many aspects of a woman’s life, including body image, social and sexual functioning and relationships. We’d like to quote Stephanie Watson, executive editor of the Harvard Women’s Health Watch, who says that Angelina Jolie “telling her story may help other women learn more about the genes that underlie some—but not all—breast cancers and the tests available for them. For some women, the benefits of such a serious preventive step outweigh the risks, for personal and medical reasons. But this may not be true for every woman.”

If you believe you are at a high risk of developing breast cancer, find a genetic counsellor, get tests done and explore all your options, risks and benefits. Work with your doctors to find the best risk reduction strategies for you. You should not undergo life changing and irreversible medical procedures like a mastectomy unless it gives you a significant benefit over alternatives. This is one decision you do not want to end up regretting.

The other side of preventive mastectomy is breast reconstruction, which has its own set of difficulties. We will address breast reconstruction in a separate article.