The Risks of Getting Tested for Breast Cancer

Testing for breast cancer is quite expensive. That's because the really hard work is searching for the specific mutation. It's like proofreading the whole manuscript to find the typographical error; once you know where it is, finding it in other copies is fairly easy. Initially, there was great fear that there would be insurance discrimination against women who have been tested. So far, this has not proved to be the case. Still, it would be wise to check out the policy of your health insurance company before proceeding. Additionally, it isn't only you who will need to deal with the consequence of your decision. It will have implications for your sisters who may or may not want to get tested. It will also have implications for your daughters, if any, as well.
If you choose to be tested and you know you have the gene for breast cancer, you will need to decide what to do with the information. Should you start getting regular mammograms and physical examinations? If your family has a history of breast cancer, you should be doing that anyway. If you do have the gene, you have a number of options. You can simply be frequently monitored to see if you do get cancer. Should you have your breasts and ovaries removed? Preventive oophorectomy (ovary resection) and mastectomy (breast resection) may help. You can take tamoxifen for 5 years.
If you feel strongly that you should get tested, you should do so at a research center. Do not go to your gynecologist or primary care physician, or to the medical school in the next town. Even if it costs a lot to fly to wherever the closest research center is, do it. You will only do this once and it will greatly affect the rest of your life, so you had better do it well. A research center will have counseling and you will do the tests appropriately, giving you the most accurate information that's possible.
When you yourself have breast cancer, the emotional conflict becomes more intense. You tend to think that you're unlucky and that you're bound to get it again, so you think you must have the defective gene. Further, your own psychological issues get mixed into your perceptions. Were you mean to your mother when she had breast cancer, so now you're being punished by inheriting a bad gene?
There are, of course, more rational reasons for women with breast cancer to consider getting tested. They may want to know if others in their family are likely to get it. They might consider having children and the possibility of passing on a breast cancer gene could play a role in that decision. Women with cancer in one breast are more likely to get it in the other and they might want to consider getting double mastectomies if they know they have the gene. People with the defective gene have a slightly higher risk of getting colon cancer as well. So if you know you have the gene, you should consider getting regular colonoscopies (a medical procedure during which a long flexible instrument is used to view the entire inner lining of the colon).
The question of testing depends on you and your family. The answer will be different for each person. If you are considering it, by all means get counseling so that you can get up-to-date information on the risks and benefits for you and your family.