Post # 1
Like the title implies, I was wondering if any other bees are BRCA 2+. My aunt has advanced ovarian cancer at 40, and now it looks like my grandmother has breast cancer (this makes both grandmothers).
I guess I’m wondering if anyone else feels like it has taken over their lives… My wedding is going to be the day before Christmas Eve, but I think it’s more like one final time for the family to get together while we are all alive rather than a celebration of the union of Mr. Summers and myself. I don’t even know if I want a wedding anymore (though my mother wouldn’t hear of it), I just want to marry Mr. Summers as soon as possible and get our lives together started. The doctors have already told me they want to take the ovaries by 30 or so.
Is anyone else dealing with this sort of thing? Has it influenced your wedding plans, or plans to conceive?
Post # 3
I’m not exactly but my mom was diagnosed with cancer just a couple weeks ago. Fortunately, the prognosis is good but I’m starting to realize my “enviable” family history isn’t as clean as I thought. Turns out it’s just that no one talked about it.
If it’s any consolation, our wedding also turned into “a reason for family to gather” but by the time it got close I was thrilled about it. I was over the focus being on me and was happy to just have everyone in one place. Of course, we were still the center of attention but it was more enjoyable for me that way. Hopefully everything lines up for you as well.
Post # 4
I have known I was BRCA 2 positive for a few years (though I only started sharing that publicly since they passed the anti-genetic discrimination law). My mother had two seperate premenopausal instances of breast cancer at 44 and 46 – thankfully both of them were caught early and she is fine now, but she and then I got tested after that.
I’m not that scared of breast cancer – it’s definitely the ovarian cancer that is much scarier. I’ve also never wanted children, so I can’t say that knowing my genetic profile has altered my wedding plans or hurried my family planning either. Though that does leave a lot up in the air because I know at some point I will have a preventative hysterectomy… I’m really not looking forward to having to undergo premature menopause (I have had doctors tell me to do it now, at 28, if I am sure I don’t want kids, but I can’t handle that). I think I will start re-evaluating being ready at some point between 35 and 40.
There are not very many females in my family, which probably also makes things different. I’m sorry to hear about your aunt (and your grandmothers)… that actually kind of terrifies me because I’m kind of playing the odds if I keep my ovaries in another ten years or so.
It’s definitely weird feeling like I am going to have to take some major action to deal with my genetic lottery. My fiance is totally on board with this despite his dislike of fake boobs (he just peeked at this over my shoulder and just said “aw, you know I’ll take care of you”). But I guess on the other hand, I’m lucky that hardly anything else runs in my family on either side. There’s a lot of awful stuff in the world. Knowledge is power, but sometimes it’s kind of scary.
This already got long enough, but feel free to PM me with any questions or if you want to talk / vent / anything.
Post # 5
I just found out today that my sister and I are both positive. (We took the test at the same time.) We are not surprised since our mom had Breast Cancer at 43 and our aunt at 45 (both survived) as well as our grandma.
Our doctor is awesome. He said there are 3 courses of action. Most aggressive: double mastectomy and bilateral ovary removal. Middle: take Tamoxifen preventatively (although not totally studied on younger women…very successful in older). Least: yearly screening including breast MRI and interuterine ultrasound.
We will both be choosing the yearly screening until we’ve had kids. We are both currently TTC. I’m 30, she’s 27. I will probably elect to remove my ovaries after I have a child (we are only planning on one). They highly recommend this before age 40. I really don’t want to do the double mastectomy though…we’ll see.
It’s pretty weird thinking about prophylactice surgery… I’m glad to finally know for sure and to have yearly monitoring. I wish I would’ve tested earlier!
Post # 6
@JaneyD: Hmm, some of that is really different than the protocols I discussed with the genetic counselor at the UCSF high-risk program.
I’m 28 and was told not to consider removal of ovaries until 35 (don’t plan on having any children). That before that, the other risks (increased risk of heart disease, osteoporosis, etc) are much higher, but that 35-40ish is a good age to get it done. The big benefit is doing it before menopause so your hormone level drops.
I was also told to do breast exams every 6 months, alternating between mammograms (not as effective on younger women, but better at detecting DCIS and to have a comparison for the MRI) and MRIs, having a professional manual xam each time. I am supposed to start intrauterine exams after I turn 30.
The genetic counselor I talked to seemed to think that preventative breast surgery was a little drastic – that she could understand and support if I wanted to do it, but she seemed to think that it gets pushed on women too young and too often.
I’m sorry to hear that you and your sister are positive, but I think it’s great to have the knowledge to take action.
Post # 7
@Entangled: That actually sounds almost exactly the same, maybe you misunderstood me. I will do the ovary removal around age 35 after having a child “hopefully”. But definitely by 40. My Dr. agreed that mammograms don’t work well for younger women so he recommends MRI just once a year. As far as ultrasound, he starts at age 25 and does every 6 months with a family history or once a year without one. We are actually sorta glad it’s both of us, not just one…we’re in the same boat to support eachother. I can imagine it being hard being the sister whose negative and feeling guilty.
Post # 8
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