Just found out I'm BRCA2 + :(

MiniMacsMom

So, I don't have any family medical history, but I found out today I am BRCA 2 +.  There was always a slight chance because of my age that I would be BRCA+ but I don't have a "medical history" of breast cancer.  I am not really complaining, but I cam kinda having a surreal moment.  Most of the time I have been angry or sad when I have found out part of my DX, but this is just weird.  I don't know how or what to feel.  I had come to terms with no more bbs for various reasons, but knowing I HAVE to have my ovaries taken on top of my boobies and its not really a choice sucks.  It was easier for me when I thought I had a choice since so much control of my life has changed.  I am not sure what I am asking for, mostly just venting because I don't know anyone BRCA+.  Is this normal?

Rachel1

Sorry about the BRCA2 dx. I know how you feel. I was told last January -- after I finished chemo and rads the results came in.  I have absolutely no family history either so I felt completely blind sided.  In February I had a hysterectomy -- which I had been contemplating anyway -- however, I felt like the decision was somehow no longer mine.  In Sept. I did a bilat. mx with diep reconstruction.  Somehow the BRCA2 adds this whole new F-ing dimension to the whole thing. It really is surreal.  My oncs. at at major med. center didn't even want to test me for BRCA because of my age -50- at dx. My local onc. felt it was important. I don't like the dx, but I'm glad that I have that piece of information so that I can be proactive.

 Check out the FORCE board (Facing our Risk).  Your feelings are totally normal. 

 Hugs, Rachel

dx 2010 IDC 4.5 grade 3 w/ node involvement, ER+, BRCA2+ 

JacquelineG

I know how you feel!! i was in the exact same situation! No family history whatsoever of breast or ovarian cancer. In fact I was 39 years old and almost not tested (under 40 is a risk factor - my only risk factor). It is a big shock, but you'll be OK! I ended up having my ovaries out, and even though I wasn't happy about it, to me it's extra insurance to rid my body of estrogen. I had to go back and do mastectomy on my good side and had oopherectomy at the same time. Recovery from ovaries was a piece of cake. And I am feeling great now - probably in better shape than I've ever been. You'll be ok! My sister and my parents were all tested after I tested positive, and turns out my dad is the carrier (we think his dad was carrier too, which is why we never knew about it). My sister tested positive and has had prophylactice mastectomy (and baby afterwards!). I feel like the information saved her from getting cancer. There will be some good coming from all of this, but let yourself grieve a bit -- it's normal! You can PM me if you want at any time...

Jackie

Rachel1

Jackie,

 Didn't you have some information on a BRCA study that showed BRCA women responded better to chemo than nonBRCA women? Can you confirm?

Thanks,

Rachel 

mamabee

I know they're looking at PARP inhibitors in the treatment of BRCA women. There's at least one new study posted at the clinical trials website. Here's an article from a couple of years ago

http://www.breastcancer.org/treatment/targeted_therapies/new_research/20090624.jsp

 (Just found out this week I'm not BRCA even though there's breast cancer all over both sides of my family, but I did some research since I halfway expected to be.)

hrf

I agree that checking out the FORCE website is a good idea. I'm BRCA2+ as well. Many in my family are. I am not aware nor has my onc given me any indication that tx for BRCA women changes. The tx is determined by the kind of breast cancer. However,  it would be good if there was something that could be done for us. Unfortunately, being BRCA2+ is like having a black cloud permanently over my head. But there's nothing that can be done once you've had all the prophylactic surgeries. 

MiniMacsMom

Thanks Ladies   I am still feeling kind surreal, before this I had finally reached a happy/comfortable/non-worried place.  I feel mostly due to the confidence I got at MDA, but I am not there to discuss this with them   I won't see them again until Feb.  I know this doesn't affect my chemo, but the science troll that I am likes to always know all   I am feeling better today, but again its still kinda unbelievable.  I think I am more worried waiting for my Parents to get tested than for my own results.  I am kinda hoping that I am some kind of special spontaneous mutation an we won't have to trace this through Many Aunts uncles and cousins.  I am one of the oldest and most don't have kids and its sad for me to think that they might never get to breast feed if they have a PMX.  I was good with no more babies, happy with just my one but for some reason this makes me really sad about no more babies and if I did not getting to breast feed said little one.  I have my one boob but it was going to go during reconstruction... thats 1.5 years out though so now it might go early.  ugh. PITA!

jennyboog

I'm sorry, I am BRCA1+ and it came as a complete shock to me also.  I have no family hx. of BC or OC, in fact I'm the only one in my family to have cancer.  I looked up family members that didn't even know me to ask about their medical hx and there has been none.  I actually thought about getting retested....I thought they made a mistake.  I was done with having children and removing the ovaries wasn't a big deal to me (was super easy too), it bothers me more that my girls could be +.  After I got over the shock it did help explain why I got BC at 34 but still confuses me as to why I was the only one.  None of my family has been tested, although I told them to....that's another story.  FYI - If your family members get tested you can give them your mutation type and that is what the lab will look for, it will be cheaper for them if they are paying out-of-pocket, that way the entire test is not ran.  This is what the lab told me when I called them.  I hope you feel better soon.

Moderators

Dear Minimacsmom, 

A lot of useful information about BRCA+ can be found in the Genetic Testing section on Breastcancer.org. 

We hope this helps.

Best wishes,

The mods 

AnacortesGirl

I'm sorry the BRCA2 was such a shock to you.  For my mom and I it was a relief since we now understand why all the cancer in her family.  She remembers her dad getting a lump removed from his chest when she was in high school and we think that he probably had breast cancer since the mutation came from his side.

This mutation could possibly change your chemo depending on what you want to do and how aggressive your onc wants to be.  There is evidence indicating that the platinum chemos (carboplatin, cisplatin) are more effective against BRCA2 tumors.  And as mamabe mentioned, Parp Inhibitors look very promising.  There might be a trial out there with Parp Inhibitors that is accepting stage III.  If you want to do some research you can go to the NCI website and search all the trials.

bak94

I expected to be brca positive because of my strong family history, but I was still shocked when I got the call that I was brca positive! I understand the feeling, but you will come to terms with it. And yes, brca tend to respond better to certain chemos .. I had a complete response to as followe by abraxane/avastin.

JacquelineG

Hi Rachel1

I don't have a specific study but recently one came out where BRCA2 positive women with ovarian cancer responded better to chemo thank non BRCA ovarian cancer, so they are hopeful that this means that BRCA2 breast cancer tumors will also be very responsive to chemo. My oncologist told me about a study in Israel where BRCA positive women did just as well and survived at the same percentage as non-BRCA. Prior studies had suggested that BRCA tumors were very agressive, but my onc was confident that my being BRCA2 positive did not put me at a disadvantage. I was relieved to hear that!

Jackie

lisa1313

I just found out i am BRCA2 + and am just sick over it.  I had BMX in May it was caught very early and oncologist said no chemo or radiation.  Now this. I feel I want my ovaries removed.  But whats next?  Will this ever be over? Does anyone know what he difference between BRCA1 and BRCA2?  This is all so very confusing to me.

jennyboog

http://www.nature.com/onc/journal/v22/n37/full/1206678a.html

lisa1313...here's a link to a page that explains some of the differences between the two.

MiniMacsMom

Lisa, There are a lot of difference.  BRCA 2 puts us at a slight increased risk to multiple kinds of cancer not just ovarian, but our risk of ovarian cancer is lover than BRCA 1.  Join the FORCE boards mentioned above, it makes a HUGE difference.  I would also recomend seeing a genetic counsellor.  Than can answer more of your specific questions and will know more statistics off hand  

I am so sorry that you are BRCA positive, but once I got over the absolute shock of being BRCA pos its not a bad thing.  It actually means that we will be checked more closely and mroe often by specialists for ovarian, pancriatic, melanoma and melanoma of the eye cancers. 

 Do you have any relatives?  Once of the other benefits of know is the ability to pass on the knoweledge to relatives.  I am 28 so my parents are getting tested to see which line this is coming from so we know what aunts/uncles and cousins to have chekced (or watch).  The one neg is that the GINA laws that protect our health insurance don't protect our live or disability insurance, so anyone who gets BRCA tested in  your family may want to increase policy coverage.  Again a genetic counsellor can help with all this   Happy Christmas!