Another timely guest-post from a regular readers and commenters mischief manager and baraqiel.
mm: When I was 36, I was diagnosed with early-stage breast cancer (ductal carcinoma in situ, for those of you who know the terminology). I was extremely lucky, as it was found on a baseline mammogram. Because it was such an early stage, I didn’t need chemo or radiation; I just had a mastectomy. Because the carcinoma cells were diffuse through a large area of the breast, lumpectomy wasn’t an option.
Fast-forward 20 years. I now have a daughter who is a young adult. She has a fibroadenoma in her breast, which she would like to have removed. (Wiki defines them as small, solid, rubbery, noncancerous, harmless lumps composed of fibrous and glandular tissue. They are extremely common, especially in women with large and/or dense breasts.) So she goes to a surgeon, who suggests to her that both she and I be tested for brca1, the gene that is associated with breast cancer, especially in women of Ashkenazi Jewish ethnicity. He says that I should be tested because if I am, the test will be less expensive for my daughter.
So…what do we do? I thought about it and decided that I do not want to be tested, for a number of reasons. First, I already know I have a history, so the test won’t tell me anything new. Second, the test is probably expensive and may well not be covered by insurance. Third, any test results will become part of my permanent medical record, which can have all kinds of unexpected ramifications in terms of getting and keeping health insurance and also in terms of getting jobs. Not only are these concerns valid for me, they’re even more important for my daughter, who will be entering the job market after grad school.
So I declined to be tested, even though my daughter would like to know her status. To me, the negatives far outweigh the positives, for both of us. Harpies and friends, have you experienced this dilemma? What would you have done in my place? Have you had genetic testing of any sort? How did you make your decision, either for or against?
baraqiel: From my perspective, I find myself in an unpleasant bind. On the one hand, if I got the testing done and it came back negative, it would be a relief: I would know that my mother’s medical history wouldn’t mean I have to be more worried than any other woman my age. On the other hand, the baseline of worry and care necessary when it comes to breast cancer is still quite high. Even if I knew that I didn’t have to worry about inheriting my mother’s cancer specifically, I would still have to worry about just getting cancer like any other woman. Without knowing the test results, I can’t get complacent. This adds some stress and worry to my life, but also pushes me — and my doctors — to be vigilant.
The surgeon that I consulted with regarding my fibroadenoma has recommended a very aggressive screening regimen — MRIs and mammograms alternating every six months starting when I’m about 25. While that sounds like a hassle, early detection is *the* most important part of a successful cancer treatment. Given my family history, if I can get that sort of screening schedule approved by insurance without having the “black mark” of the genetic mutation on my record, it’s perhaps the best of both worlds. Not knowing the test results might be the only way for me to avoid complacency on the one hand and a fatalistic resignation on the other. Although I still think that the fact that my genes could be used against me in terms of hiring is unjust, what I’ve started to take away from this experience is how important it is that I myself am vigilant and take responsibility when it comes to my health, even in the face of uncertainty.