BRCA2+ --oophorectomy question

So are you BRCA2 positive or do you just have the variation of unknown signifigance?  I  have the BRCA2 mutation of "unknown signifigance".  My breast surgeon said she likes to treat it as if I was BRCA2 positive , and therefore thought it was wise for me to choose the mastectomy.

I remember my oncologist saying that there are a lot of mutations on the BRCA genes, and only about 5% show a correlation with cancer.  So he said it was a 95% chance that it didn't mean anything.

Also, I did a lot of research about the BRCA2 gene and found that the risk of ovarian cancer was considerably less significant than being positive for the BRCA1 gene.  In addition it looked like the real risks for ovarian cancer in BRCA2 didn't present themselves until later in life... like 70+ years.  I printed out the study and can find it for you if you'd like.

Anyhoo... just wanted to put that out there.  It was frustrating researching because they tend to lump BRCA1 & 2 into the same risk category for ovarian cancer and they aren't.

I'm 46 and premenopausal.  I'll be off tamoxifen at age 49 and will be facing this same question soon.   My onc currently has me getting an ultrasound every 6 months of my uterus and ovaries.  I know it's not foolproof for detecting ovarian cancer, but I figure they would be able to better see a change?

I will look for that report this weekend.  With a quick google search I did find this on PubMed.gov  -->  Meta-Analysis of BRCA1 & BRCA2 penetrance

As you can see in the results and in the link to the graph..."Meta-analytic mean cumulative cancer risks for mutations carriers (which we are not  ) at age 70 were as follows:.... ovarian cancer risk of 40% for BRCA1 (positive) and 18% for BRCA2 (positive).

So, as you can see in this analysis... the risk IF you were possibly BRCA2 positive is much lower than BRCA1.  Technically we aren't even BRCA positive so our risk would statistically be even lower.

My gut is telling me to maybe wait until I am in my 60's to think of removing the ovaries.  That's when it appears the risk starts to rise.

If you are doing the 6 month US and the CA125 I would feel pretty good about that kind of watching.  My onc doesn't do the CA125 on me.  I can't remember the reason.  Maybe he'd wait until I'm in menopause?  I'll ask next time I see him.

I have a dear friend diagnosed a few yrs ago wtih Stage 3c ovarian (actually, fallopian tube) cancer. She afterwards learned that she is BRCA 2+. Her mother lived to be 96, she is an only child. While bc/ovarian lurk somewhere in a great aunt or a great grandma on her maternal side, she figured since her mom was fine she was fine.

Okay, so maybe my reaction is emotional. I understand your concerns. They are valid. But given life death, the fact that you are BRCA 2 +, I simply cannot understand why you would hesitate on this.

Just being honest.  I too learned I have some genetic issues I don't want to get into personally, and therefore hysterectomy / oopherectomy was offered. I could only think of my friend, her situation, and look upon my diagnosis of a chance to act on genetic information before it strikes me dead, literally, as the gift that it is. I hope you see it that way eventually too, or end up lucky like my friend's mom and against all odds do not develop disease.  

Best wishes, it ain't easy but I am convinced one must see this bummer genetic info as a gift. Flip in upside down, inside out, and see it that way.  

I'm sorry: your original post said you were BRCA 2 +, so I took that as meaning you were BRCA 2 +.

If you are not BRCA 2 + then you don't need to worry.  Or, if what you mean which I didn't get initially is that there is a variation of 'unknown' significance in your BRCA 2 gene then you need to speak to people more expert than this board as to how the medical cognescenti consider this--do they consider you BRCA 2 +? 

You sound like you don't want an oopherectomy. If you are not considered to be BRCA positive then you won't need to get one. But if you are then I wouldn't hesitate as explained above.

now i'm confused: seckel or tracker, who is the original poster? anyway, whoever, I understand the concern as no surgery, like no drug, is without side effects/etc. These vary. Horror stories can be posted and seen on internet, others who have NO problem are not heard from. Who can predict what your experience will be: we are all individuals and not even the surgeons know who will adversely suffer SE.  

So you are right to weigh the cost/benefit analysis and I don't really know what having a 'variation' that isn't BRCA2 + means! And maybe jury out a bit, so hard to weigh unknown cost with unknown benefit.  Sorry.

tracker/seckel ~ I think my Onc did say he doesn't do CA125 because of the unreliabilty?  I will have to remember to ask.  

It is difficult wrestling with our own minds as to what is reasonable treatment, and trying to base it on scientific evidence and not so much on fear.  I think it is helpful to "talk it out" with others on the boards because so often we are left to make the choices ourselves.

tracker ~ interesting.  I wonder what % she would give?

I know I have reached my lifetime maximum for insurance for genetic testing, so if I wanted to do what you did it would be all out of my pocket too.  I think I'm just going to cross my fingers and hope for the best.

I'm glad you got your peace of mind and get to keep your ovaries!