My post the other day had some of the facts wrong about “Jill’s” story. She graciously wrote to me and gave me more insight into her story and as I read her email I wept. She has given me permission to post her email here, although I’ve changed the names of her family members. I hope it touches you deeply and inspires you to do everything you can to stay up to date and to be proactive with you health and the health of those you love.
“Couple of facts about my story–but not necessarily necessary to the point of the piece: my mom died of BC at 36, I was 15 months old. There were 4 of us, 3 girls and one boy. In 2002, my younger half-sister died of inflammatory BC–which really rocked our worlds because she wasn’t genetically related to our mother AND she had this form of BC we’d never heard of! She left 4 children–the youngest is a senior this year. Anyway, it was just after her diagnosis that genetic testing became available (at least to me) and I opted to have it done. I was so sure there was a genetic link somewhere (my mother, her mother, 3 of my aunts)–but except for my mom, all of the others didn’t present until after age 50. When I did genetic testing, my two full-biological sisters were already in menopause and it was believed (or recommended) that they didn’t need genetic testing–if they got cancer is was “bad luck” not “bad genes.” And when I came back negative for BRCA mutations, it seemed like we’d somehow escaped.
One year after my younger sister died, my oldest sister (Cheryl–just to avoid confusion) was diagnosed with BC. It was very small, etc, and she was living in another state and very BC informed, and her doctors were the best, etc. So she had a lumpectomy and radiation and went on Tamoxifen. Five years later, I’ve moved to Nebraska and have started to see Dr. Silva; he’s very interested in my genetics and basically tells me to get rid of my ovaries–they can’t do anything but become cancerous at this point. Cheryl thinks this is ridiculous–none of us has used any meds to assist us through menopause because we know they cause cancer and now I’m electing to plunge into menopause–blah, blah–just the younger sister…Cheryl always knew best, a real take-charge kind of person.
The same week that I had scheduled to have my ovaries removed despite Cheryl’s opinion, she finds out she has ovarian cancer. All of the warning signs were there and she’d JUST been through all those “five year out from BC” doctor appointments and been declared cancer-free! What the hell? And THEN they decide to do the genetic testing and sure enough–she’s positive. Why wasn’t she tested sooner? If she had been, she should have been advised to get those ovaries out! She was 60 years old. It was so senseless.
It took serious convincing for our middle sister (Lisa) to get tested–and even then she didn’t really want to know! I practically forced in to get her ovaries removed. I’m the one who has pushed and prodded her to alternate a mammo and MRI yearly. And to top it off, my brother is BRCA positive, too–and both of his daughters (aged 32 and 25). They, too, have been told to alternate a mammo and MRI yearly and to get their ovaries removed as soon as they’re done with them. Now we have this new info about mammos for young women! It makes me sick…I feel like we’ve been blind-sided every time in spite of our diligence. And as the ONLY one who does not carry the gene mutation, I feel overwhelmed with trying to “help” my family. And now these other women we’re trying to navigate–who don’t “need” us or even want our information! It’s breaking my heart–I can’t stand to do it and I can’t stand NOT to; to keep trying, because if there’s even ONE–wouldn’t that be better? Wouldn’t that be one family that doesn’t have to live like this? With regret and sorrow…
So I don’t think you have to change the details of my story–they don’t really affect the point you’re making…which I totally “feel your pain.”
P.S. There’s a fabulous book called Motherless Daughters you might want to get. It really helped me!