What to do if you're postive for BRCA 2?

Mira32

I just found out my father is positive for BRCA 2 mutation. And it's not surprising, since we have a long history of breast cancer in our family going back 4 generations (that I know of). I’ve just made the decision to get tested. I know it’s a 50/50 chance of being negative, but I’m not sure what I would do if it were positive. Is there anyone out there who is not opting for surgery? I’m 31, and although I’m done having children, and am CA free, I’m worried about how surgery and instant menopause would affect my quality of life. Any advice or opinions would be welcome!

bisous3

Have you spoken with a certified genetics counselor? They are the most knowledgable about this subject. Also please check out FORCE (Facing Our Risk of Cancer Empowered) at www.facingourrisk.org. That organization has been invaluable to me throughout my BRCA experience.

moogie

I have not been tested , but due to other factors had a risk equivalent to a positive BRCA. A few years ago before my risk had been assessed so high, I got counselling so I would determine what I would do if I did find out I had a risk in the 85% range. I felt risk reduction, with surgery , was the route. Untilmately I had the surgery.
Personally I don't think it is a good idea to have any genetic test without a sense of how you are going to use that information before the test is taken. It can create chaos in your life, and meeting with a therapist to discuss all the emotional responses you may develop worked well for me.
Moogie

beth1225

I agree with Moogie and Bisous. I was tested and had a lot of counseling afterwards. At 42 I had a bliateral oophorectomy and was on hrt for 5 years. That way of thinking has changed and they don't do as much with low-estrogen hrt. My dad was also tested positive and was the 2nd generation (that we know of) of bc. he and his mother and all o fher sisters had bc.

I just recently had a prophylactic bilateral mast with immdeiate implants. I have had a lot of complications after and I have to say, I am a very rare case in that respect. So you can't go by my experience. However, the big picture is NO CANCER!!

Mira, check out the FORCE website. There are also local chapters set up with new ones all of the time. This way you can talk to so many more more "pre-vivors" like us who are going through all of the same questions. Please feel free to pm me or go to my profile and send an email if you want ot talk more.

Good luck and keep coming back with any questions and we will be here to help you in whatever you decide to do.

justaly

After I tested positive I had a propholactic (sp) hysterectomy and mastectomy on the healthy side, I'm 32 and do have some mood swings but not any really really bad menopause symptoms.

oldsambvca

I just found out that I am BRCA2+ and am going to opt for double mast w/reconstruction. I had a prophylactic hyst/ooph after treatment for IDC in 2006. The risk of keeping my breasts and worrying about a recurrence or new cancer is not worth it to me.

I am only 42, but if I can have reconstruction for my own self esteem, it will greatly help reduce my worry and fear. I have other cancers in my family (lung/pancreatic), so I may have other issues to deal with later, but I was the first one in my family ever diagnosed with bc. If my testing and experience can help my nieces and nephews, it was all worth it.

Valerie

yankeechief

BRCA2 positive. Had ooph and hyst 8 years ago. Still on low dose premarin cause I need it for energy or can't cope with big job.
double mastectomy and diep reconstruction scheduled for July 19th.
Would appreciate any advice like what you wish someone had told you before you went in for surgery and also how long you were out of commission?

steph35

Tested + as well, with lots of familial connections. I've been referred for appts. with surgeons, ps, obgyn, etc. Just trying to keep the appts. and meet with counsellor. Other family members tested + as well. How do you support others when you need support yourself? I'm trying to stay positive, but its hard.
Keep all appts, to at least know what may be coming if and when you make your decision for surgeries or not.