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Genetics

Angelina Jolie's Tough Decision—What It Means for Us

Whether or not to have a prophylactic surgery is an individual choice.

The massive news coverage of Angelina Jolie's decision to have a preventative double mastectomy following testing positive for the BRCA1 gene mutation has people thinking and talking. Jolie's decision to go public about her circumstances is sure to heighten awareness about testing for the gene mutations that increase one's odds of getting breast and ovarian cancer. The news also may influence those who also have the gene and are wrestling with the choice of whether to undergo surgery or continue to monitor closely to go forward with a double mastectomy, as well as oophorectomy.

Whether women who test positive for the BRCA1 and/or BRCA2 gene mutations should have prophylactic surgery is a matter of choice. It is a decision that takes into account one's personal risk of getting these cancers, health status in relation to having surgery, and psychological factors. Cost may be a factor as well. Those who are faced with this decision are routinely advised to consult one's doctor and make an informed personal choice.

One important fact that people may not realize is that the vast majority of women who get breast or ovarian cancer do not have BRCA1 or BRCA2. Breast cancer may occur due to environmental and/or individual biological (but non-genetic) factors. Testing negative for BRCA1 and BRCA2 does not mean that one does not need to monitor routinely for breast cancer. And given the prevalence of the disease (12% of all women), it is important for every woman to be appropriately vigilant. Those who have several and/or close relatives who had breast or ovarian cancer, and also who test positive for the BRCA1/BRCA2 gene mutations are at the highest risk for getting these cancers (though they may never develop them). The level of vigilance therefore needs to be higher, and of course, the anxiety tends to be worse. Still, how to cope with that anxiety and what to do about it is an individual choice, and is likely not an easy one.

Many doctors caution that having an instance of breast cancer in the absence of the BRCA gene mutations does not indicate the need for double mastectomy. Each case presents with its own factors and the recommended treatments will vary accordingly. Disturbing to doctors is a recent trend of some women to elect for double mastectomy when diagnosed with cancer in one breast, but testing negative for BRCA1 and BRCA2. In such cases, lumpectomy may be the most appropriate solution. Caution is advised when faced with such a situation to not allow anxiety to drive the decision-making process.

All of the ideas and facts surrounding this complex issue begs the question about how to feel about women's choices when making such tough decisions. There is no one right answer for all. The most neutral place seems to be that of respecting each woman's right to make her own choices - the best decision she can make at the time given the facts she has at that time. Not everyone needs to be tested for the BRCA gene mutations. According to guidelines located in an article on CNN.com http://www.cnn.com/2013/05/15/health/brca-expert-qa/ (5/15/13), those "with a personal or family history of breast cancer appearing before age 50, ovarian cancer at any age, breast cancer in both breasts, male breast cancer, multiple cases of breast cancer within a family, and breast cancer in individuals of Ashkenazi Jewish ancestry should get genetic counseling to determine whether they should be tested." Nevertheless, for all women, taking care of oneself, getting routine mammograms, and if indicated, screening for the BRCA gene mutations remains important and the best we can do, and for the majority, are all that is needed.

Self-esteem can be significantly affected by mastectomy, though the effect may be temporary. Therapy, and especially CBT, can help those who are facing these issues to sort out thoughts and feelings as well as to cope more effectively.

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