If several members of your family had died from breast cancer, would you want to know if you carried the breast cancer gene or not? What if you were only 18 years old?
That is the scenario described with this British family - 18-year-old Josie is facing whether or not she wants to know, based on the fact that both her grandmother and her great-great-grandmother died of breast cancer. Her mother already had a double mastectomy as a preventative measure.
I have heard of others doing this before - even in the absence of actual cancer - and while I can't necessarily blame them, I feel that it's a bit premature. It saddens me, almost, because to me it means they're living their lives in fear. Trying to cross a bridge they haven't even come to yet, or might not, ever in their lives.
Risk is not always absolute.
Although there is some family history, it's not like it was her mother, her grandmother, and all her aunts. A great-great-grandmother, while lurking in the background, is not really considered an immediate family member. As someone pointed out on my FaceBook page, one thing can really lower that risk: breastfeeding. Did this girl's mother breastfeed her? I don't know exact breastfeeding rates for 18 years ago when she was born, but if they follow current "trends" I'd have to guess that no, she didn't. Was her mother breastfed? Based on the photograph, I'd say she's maybe in her mid-50's. Breastfeeding was on the verge of being abysmally low then, what with the introduction of milk substitutes and hospitals taking a very aggressive stance against nursing. (Although this family is from the UK - where breastfeeding rates are the lowest of all Europe.)
I have to wonder - if part of that fear instilled in her about the possibility of cancer hasn't been part of her own mother's fears transferred to her. Growing up with a mom who had a preventative mastectomy can't be easy to ignore; breasts are therefore seen as weapons of mass destruction rather than a source of nourishment, comfort or pleasure. The idea of being gripped by fear over the possible results of a blood test is like letting those results - real or perceived - rule your life. This girl has dreams and plans of doing things and yet is already acting like she's been diagnosed.
One thing Josie has on her side is technology, and studies that tell her certain things that perhaps they didn't tell her grandmother: that breastfeeding - both just doing it to begin with and for a longer period of time overall - can greatly reduce her risk of getting cancer. That just because she might have the gene, that still doesn't mean that she will get cancer. That even if she does get cancer, there are much less invasive treatment methods that can save the breast. That only a small percentage - maybe between 5-10 percent - of breast and ovarian cancers are inherited. That a portion of breast cancers are a result of hormone replacement therapy and are estrogen-fed tumors. Does that mean her mother went through a double mastectomy for nothing? Maybe.
One side note: Many breast cancer advocacy groups want to increase awareness, both of risk factors and ways to prevent it. Unfortunately, long-term breastfeeding - or nursing at all - doesn't often make the list, which is troubling.
A dear friend of mine died several years ago after a long battle with breast cancer. I don't know that she had any family history, but she originally got breast cancer at age 40, back in the early 1980s. There weren't many options available then, so her choice was a radical mastectomy of the affected breast. Over the next few decades, she fought cancer at least three more times, eventually succumbing. Why? Because they detected the original cancer from the breast - more than 20 years later - in her uterus. What does that mean? That even with a mastectomy, the breast cancer can still kill you. Then what?
I would argue that my friend crossed that bridge when she came to it - rather than systematically removing body parts to ostensibly lower her risk, she lived her life as well as she could in the midst of everything. She enjoyed her children and her grandchildren. She enjoyed an amazing support system of friends and family. But she did not live her life in fear.
One thing I have to wonder: what does a surgeon do when a woman so wracked with fear and emotion comes into his office demanding a double mastectomy? Does he educate her about her risk factors? Does he tell her no, because there is a chance she might not even get cancer? Does he do it anyway, figuring she'll just find a surgeon who will? I don't know what Josie's mom's doctor told her, because maybe some of those things weren't as fully understood as they are now. But I do know what Josie's doctor should be telling her - and saving her from the fear that has controlled her mother's life and now is about to control hers, if she lets it.
Dr. Amy Tutuer likes to argue that, as far as matters of childbirth and pregnancy, women cannot fully understand risk. She basically makes women sound helpless and stupid, as if they are incapable of coming to any conclusion on their own. I argue that while they may not all be doctors and surgeons, they can understand - if counseled properly, and adequately, by their doctors, as well as encouraged to do their own research. How can you come to a rational decision when you're thinking irrationally? When not all the facts are presented, or are falsely misrepresented, how can you make the best choice? It may be too late for her mother to change things, but it isn't too late for Josie.
Breast cancer risk: Should I have a BRCA gene test?
Preventative mastectomy doesn't benefit most, study finds