My "variation of unknown significance" now positive

sweetbean

Well, fuck.  My 2 year cancersversary was YESTERDAY and the genetic counselor called today to tell me that my genetic variation on the BRCA 2 gene is now classified as positive.  I'm basically freaking out.  And so sad.  Looks like I'm gonna lose my ovaries for sure now and I'm only 39 and I've never had kids.  And I have a twin sister - she'll probably have to have a BMX.  Blech.  CANCER SUCKS.

Anybody have any advice?  Guess I have to read up on BRCA 2 cancer now.

Del11

FORCE is a great resource.  facingourrisk.org

sweetbean

Thanks!

Mutd

Ovarian risk with BRCA2 may not be as bad as with BRCA1, and some variants in the gene may have still lower risk level. Nothing to take lightly, but all you may really need now is "a few" more years with the ovaries, without taking insane risks?

And it sounds sort of nuts that a Genetic Counselor gave you the news over the phone. There are too many details to grasp in a phone call, and too many hindsight questions. You need to discuss it with the GC in person!

gymgirl

Sweetbean - I also received the same news this week from the genetic counselor, that my BRCA2 genetic variant found 5 years ago is now considered positive. She wants my 2 daughters to get tested and for me to see a gynecologic oncologist for a ooph. I'm scared for them more than for me and so sad that I may have passed this to them. I'm afraid for my brother too who had melanoma last year, especially after the counselor said BRCA2+ increases the risk of melanoma and prostate cancer, as well as BC and OC. The only good thing is that I had a BMx even though at the time they said I only needed a single. i wonder if you & I have the same variant.

barsco1963

Sweetbean - I have also tested + for the BRCA2 gene. However, upon discussing with my onc and gyno - both of them say that they don't recommend ooph or mast of my remaining breast. I do not plan on having any more children so I am not sure why they hesitate at removing them.  I think every dr has a different opinion.

Of course with a + result your risk is higher for ovarian than the average population. But I don't think you should jump to the conclusion that you or your sister have to have ooph and mx. Your sister may not test +

When I was found to be + we all assumed it was from my Moms side due to the amount of bc there. We tested Dad just to rule his side out (as mom has passed) and low and behold - he also tested +  It was a shock to all - including the GC. Only 3 other families known to have the same variation. Due to the results they are not testing the rest of my family at this time (5 sisters, 2 brothers) as they are unsure that this variation has anything to do with my bc.

I think it would be a good idea to make an appt with the GC and get some more info - eg - what is your risk % etc. - before making any drastic decisions.

Good luck

sweetbean

Thanks for the replies!  The genetic counselor left me a message saying, "Your BRCA mutation has been reclassified - and you're not gonna like it!"  Sensitive, right?  Barsco, I totally agree with getting more opinions - I'm going up to Dana Farber after Christmas to hear what they have to say.  

Gymgirl, I wonder if we have the same mutation, too.  I'll look around for the report.  Do you have a lot of BC or ovarian cancer in the family?   Our cancer history is really limited, which is why I  never thought there was anything genetic.  My materal great-grandmother had BC and my grandfather had prostate cancer.  Both cancers can be linked to the BRCA 2 gene, but both are also pretty common.  My paternal grandmother had BC.  Other than that, there are no cousins or aunts with BC or OC - ditto for my mom and sister.  

I'm worried about my sister.  My onc definitely wants to take my ovaries, but she said we could wait a year or two.  Blech!

pamelahope

I just noticed this and wanted to add that there is a specific cancer cluster and depending on the position of the mutation your oc risk is greater or lower.



For example, 6174 has a 27 percent risk. My mutation of BRCA2 is 6633 and is outside the cluster. I have an 11 percent risk. I am electing to keep my ovaries.

Pam

Ginger48

Sweetbean- I am brca2+ also and have had BMX and ooph. I am 49. Also from ct. I was treated at mass general. PM me if you have questions or want to talk.