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You and the Breast-Cancer Genes: 10 Things to Think about When You Speak to Your Doctor

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Angelina Jolie
Angelina Jolie

Angelina Jolie’s announcement in the New York Times on May 14 of her prophylactic double mastectomy has women across the country buzzing about what they would do if they were in her shoes. Another group of women who already have to decide what to do are those who, like Jolie, have found out through genetic testing that they have the potentially lethal BRCA1 gene.

In light of this breaking news, I’d like to provide some detailed advice to those women who might be considering speaking to their physicians about genetic testing or prophylactic mastectomies or both.

  1. Not that many women carry these genes. Only about 12 percent of breast cancers today are believed to be caused by such a gene. This means that most breast cancers are not related to a known genetic cause.
  2. The genes themselves carry a high risk. The BRCA1 gene carries the highest risk of causing breast cancer. Statistically, the risk for carriers is between 40 percent and 80 percent.
  3. The issue of genetic testing is complicated, so always consult with an expert. No one should have the genetic tests done without first meeting with a real genetics counselor—that is, a qualified expert who is certified to formally calculate a woman’s risk. A licensed genetic counselor is trained to review her family tree for three enerations and to assess other risk factors the patient may have. For example, if someone has a significant family history but tests negative, this still does not guarantee that they don’t have a potentially dangerous gene. They may still carry one that science simply hasn’t discovered yet, or that researchers haven’t yet discovered a test for.
  4. Repercussions for the health of others. If someone has a breast-cancer gene, then her children have a 50-percent risk of carrying the gene as well.
  5. Men not nearly so at risk. If a man carries a breast-cancer gene, his risk of getting breast cancer is only 6 percent; therefore, they are not usually advised about prophylactic mastectomies.
  6. Other risks to carriers of the BRCA 1. This is the gene Angelina Joie carries, and it also has a 40 percent risk of ovarian cancer—the type of cancer her mother died from. There are no reliable methods for early screening and diagnosis of ovarian cancer. We have much better early tests for breast cancer. Therefore, doctors more commonly recommend the removal of the fallopian tubes and ovaries before they discuss the possibility of prophylactic mastectomies.
  7. Other effects on the entire family. Knowing that you carry a breast-cancer gene is an extremely potent bit of knowledge that will have ramifications for your whole family. Are they—and you—prepared to deal with how this news may affect them? A dysfunctional family might become more dysfunctional. For instance, if two sisters have for years been in the throes of sibling rivalry and they are now tested, what will happen if one is positive and the other is negative?
  8. Timing is crucial. You also have to consider when the time will be right to tell your children. When the breast-cancer gene test became available, I was enthusiastic because I fit the profile for likely having a breast-cancer gene. That is, I was diagnosed in my 30s and then developed bilateral breast cancers just two years apart from one another. But when I told my 15-year-old daughter that I was planning to be tested, she said to me, “Mom, please don’t yet. I want to be a kid for a while longer.” Her plea really gave me pause—and perspective. I then asked her to tell me when she was ready to hear such news. Shortly after her 21st birthday, she said she was ready. As it turned out, I tested negative; however, based on other factors, there remains a good chance that I have a gene that has not been identified.
  9. Discuss your reconstruction options. Angelina Jolie decided to have implants, but this was likely her only option because she is so trim and lean. In contrast, most women have some fat on their bodies that they would love to get rid of. So the DIEP flap, S-GAP, and TUG flaps would all be good options. (I try to steer women away from the TRAM flap, which sacrifices the abdominal muscles—no one needs to lose their abdominal muscles today.) I personally had the DIEP flap done, which used my tummy fat and took no muscle. The DIEP procedure requires no maintenance, looks great, and feels great. Implants, by the way, don’t come with a lifetime warranty—they may need replacing as often as every seven to ten years. Remember too that implants are very perky, a look that’s appropriate when we’re young but might not be suitable when we’re 85 years old. For older women, flaps may have a more natural look and feel.
  10. Should you spare the nipples? There is still controversy about whether someone who carries a gene should have mastectomies that spare the nipples and areolas. Remember: nipples and areolas are breast tissue, so keeping these intact will mean that some risk will remain of getting breast cancer. By the way, it is virtually impossible to rid the body of every single breast cell. Few people realize that breast tissue is not found just within the breast mound; it extends up to the collarbone, goes under the arms, and down to the band of the bra. So prophylactic surgery of this type still leaves a 1-percent to 2-percent risk of getting breast cancer—but that’s a statistic that a woman can live with. However, keep in mind that nipple reconstruction with 3D-like tattoos of the areolas and nipples is available. If a woman goes to the right tattoo artist, she will have exquisitely true-to-life versions of what were surgically removed, while keeping her risk down as low as possible.

In summary: breast-cancer genes

  • Get counseling before testing.
  • Make sure family members are ready to hear the results.
  • Having your test turn out negative is no guarantee that you don’t have a gene.
  • Ovarian cancer is also a risk, and this type of cancer is harder to detect early.
  • Look at all reconstruction options.
  • Go to breast specialists who are very familiar with these types of surgeries and who do a lot of them.
    • Such specialists have titles like “breast surgical oncologist” and “breast reconstruction plastic surgeon.”
    • They are experts in all forms of reconstruction, especially the most sophisticated procedures involving microvascular surgery.

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