Help!!!!!!!!!!!!!
Well the results are in.
Don't you love it when they come back "inconclusive".
There I'd been in a previous pre-BC life blissfully unaware that if you underwent testing for the BRCA 1 and BRCA 2 gene, the results would come back either confirmed or..."inconclusive". I had thought you either had the mutation or you didn't.
But nothing is ever truly straight forward in this post BC world is it?
It turns out there is a "change" in my BRCA 2...but basically no researcher anywhere has yet established what this change means, if anything. It is not the mutation they know puts you at higher risk of developing breast and ovarian cancer.
On the phone I was told that they think it is "highly unlikely" that the "slight change" they can see is or ever will be found to be a factor in increasing risk. They think I am at no higher risk of developing ovarian cancer than the next woman without any changes in their BRCA 1 or 2...apparently they will check in once a year with my sample to see if someone out there in research land has discovered anything connecting my "slight change" with anything else. Hmm...so basically you don't really know what it means, I say. Um..yes, they reply.
Excellent.
Whilst my paternal grandmother had breast cancer (and died of it in her mid 30s), I am the only other female in the clan diagnosed (at 47), and there is no ovarian cancer in the family ranks we are aware of. As my cancer is 90 per cent responsive to oestrgen and progesterone, I now have to decide what to do. Do I get my child bearing innards removed (also bypassing need to do hormone therapy), or do I leave as is and embark on the tamoxifen/amartose inhibitors (which type tbc following blood tests next week).
I'm day 5 post round four and final of chemo (yaaaaaaaaayyyyyyyyyyyyyyyyyy)....and there I was thinking next oncology appointment would be black and white. Ha!
Has anyone else out there had to deal with similar results? Would love to hear also from those of you with confirmed BRCA 1 and/or 2 mutations and how life is post surgery...know it's a different recovery for all of us, but is it a hard one?
I'm keen to do absolutely anything and everything within my power I can to avoid a recurrence, let alone developing another type of cancer, but major surgery, is major surgery, and I don't want to undertake that if it's not needed either.
Love to hear your stories.
x
Comments
Know how you feel!
I had an inconclusive result too! It is so frustrating but I guess that the technology and knowledge is just not there yet to enable them to tell us conclusively that it either is or isn't something that we need to be worried about.
I have decided to keep on the Tamoxifen for now and leave the insides alone! I have had that many surgeries in the past few years and yet another one coming up in June and I just don't want any more. Our risk of ovarian cancer is no more than anyone else and I have read that by having your uterus and/or ovaries removed you put yourself at higher risk of bladder cancer (amongst otheres). You may also still have to have hormone treatment, although not the same type.
I go to a gynocologist every year for an ultrasound to keep an eye on my ovaries etc and that gives me the piece of mind that I need.
Good luck with your decision. Make sure that you do some reading of the side affects of having a hysterectomy or oophrectomy before you make any decisions.
Louise x
Testing
My sister had the testing several years before I was diagnosed so I guessed I wouldn't have it as well, but I still had to see the genetic counsellers. Because I was the 5th in two generations in our family with BC they said even though we don't show a fault with BRCA 1or 2 there may still be other genes they have not yet discovered that can possibly contribute to BC.
I recently made enquires through them about whether another older sister (in her 50's) could somehow be eligible to have screening MRI instead of mammo & U/S (which she has paid for for years) especially after she has been told numerous times that MRI may be better because of her dense breast tissue & last year she actually passed out at the mammogram (ouch !!!). So we are both off to have a video appointment with the Genetisist on Friday this week. Should be interesting.
Carmel