Brca2+ no family history and REALLY OVERWHELMED

AlexaP

I was diagnosed with infiltrating ductal carcinoma node negative, hormone negative, 18 years ago. I had mastectomy and chemo and tram reconstruction. They have found what they think are cysts in opposite breast which will be biopsied later this month... Meanwhile dr ran bloodwork and highly suggested I get the genetic testing done... It came back that I am brca2+. So now the dr is recommending that I have mastectomy after the biopsy and have my ovaries out. Thankfully we ran a ca125 which came back negative but she says everything's gotta go to give me the best chance (uterus already gone).

I'm worried about the surgical menopause but mostly I'm worried to tell my family. There is NO family history of either breast or ovarian cancer. I know it had to be there somewhere but I came up with it. My mother is 90 and has gone through so many health issues and is finally doing well. I'm afraid this will push her over the edge. I have two special needs children. My husband has a new job and insurance is one of those crummy savings accounts deals. It is all weighing very heavily on me. I want to wait until I know what's going on with the biopsy so I will have all my facts straight before I tell anyone. It's been really hard keeping this to myself. I would love some words of encouragement. I'm grateful that my new dr stressed that I should get the test done. I'm wondering why my old dr who retired did not... But in any case,just looking for a safe place to vent, ask questions and also offer support when I can. Hoping this is the place.  Need sisters who understand the panic & sadness...

lintrollerderby

I'm very sorry about all you are going through. 

While it's good that the CA125 came back ok, please know that it is very often unreliable. I am BRCA1 positive and I totally get the devastation at learning you have a mutation; and it's often coupled with a feeling of gratitude at having the information so that it can be acted upon. There was not the push 18 years ago that there is today for genetic testing after a breast cancer diagnosis. Not to pry, but do you have children that may need to contemplate testing? Also, it might be prudent to alert relatives of the parent from which you think the mutation came so that they can decide whether they want to pursue testing.

I also had no known family history of breast cancer when I was diagnosed at age 34. I was surprised to test positive for a BRCA1 mutation (that we later learned I had passed to our only child--our daughter). Both of my parents were already dead, but I'm pretty positive I inherited my mutation from my dad. It was able to hide in his small, male-dominated family. 

If you haven't already, you might want to check out facingourrisk.org for all kinds of info, support, and resources regarding BRCA.  

Best of luck to you.

AlexaP

thanks for the link!  I'm not counting on the ca125 to procrastinate, simply hoping that it means I'll be rid of the buggers before they can go south on me too...  I feel so betrayed by my body (not the first time) and I also feel like a watermelon being scooped out... But as long as it keeps me alive they can go ahead and do their thing.  At least we know where there are problems and where potential problems may occur.  Just learned about the increased risk for pancreatic ca and skin cancers. Something new to process, worry about and get over... I would imagine any kind of cancer is going to try to get through... Gotta make sure I get plenty of vitamins and really stick to daily prayer and yoga... Being an 18 year survivor I didn't want cancer to define who I was, I just wanted to be Joe Shmoe walking along doing my thing.  But I guess life has other plans.  I need to be more careful, more proactive and really live life.  Hard to do when I really just want to crawl under the covers and make it all go away in sleepy denial...  Must practice gratefulness for my many blessings and tell the bad thoughts to begone!