Does anyone have the BRACA 1 or 2 gene?

eileen · 03-16-2007, 01:37 PM

Even though I tested NEGATIVE twice for these genes I was told by my genetic counselor at Memorial Sloan that I did in fact have the braca gene because of my very strong family history of breast cancer, my own ovarian cancer in 1998 & my diagnosis of breast cancer in 2004. The counselor told me that the test was not sophisticated enough to pick up the gene but he was sure that I had it.

I feel as though I am a walking time-bomb because of my genetic makeup, being HER2+, stage 3 and having 7 positive lymph nodes. I've been told that having a mastectomy would not prevent my cancer from spreading or coming back. Since the counselor told me that I had the braca gene my anxiety level has accelerated.

I was wondering if anyone out there was in a similar situation and how you were coping. I finished all my treatments in 2005 & so far there is no sign of cancer but I'm terrified that the other shoe will drop sooner or later.

tousled1 · 03-16-2007, 02:08 PM

Eileen,

AS you can see from my signature I am stage IIIc and tested negative for BRCA1 and 2. I have a very strong history of both ovarian and breast cancer on my mother and father's side of the family. My sister had bc, my mom's sister, both grandmothers, dad's sister ovarian cancer, etc - the list is just too long. I am due to finish my year of Herceptin in June and am getting a bit anxious. I want to be finished with all treatment but am starting to worry more now than I ever did. I had 14 of 26 nodes positive. I think that it is common to feel extremely anxious since a recurrence or mets is sort of out of our control. We can do what we are supposed to do but sometimes we have a recurrence or mets. I'm trying very hard to remain positive and pray that the last year and a half of treatments have taken care of any cancer cells that may be circulating somewhere in my system. I know this isn't too much comfort but having breast cancer is not a death sentence. I've been trying to think of it as a disease that can be controlled. Now with Tykerb approved we have even more options available. I'll keep you in my prayers.

eileen · 03-16-2007, 02:20 PM

thank you kate for your encouraging words.
guess i'm having a bad "coping" week.

MichelleMoon · 03-16-2007, 03:07 PM

Have you been told that testing positive for BRCA 1/2 makes you more susceptable to recurrences? These cancers (at least BRCA 1) are more agressive, but I don't know if that means we have a higher rate of recurrence. In other words, you may have the same probability of recurring whether you have BRCA or not.

I hope we can help resolve you anxiety. You have been through so much already!

eileen · 03-16-2007, 03:32 PM

Hi Michelle,

Yes, I was told by the genetic counselor that I definitely have a higher rate than the average breast cancer patient for a recurrence.

rinaina · 03-16-2007, 04:08 PM

I was negative for both Braca I and II

momdeeco · 03-16-2007, 06:07 PM

Eileen,

I had genetic testing and the results were inconclusive. They were neither positive or neg. YEEK! I feel your anxiety! Every little ache, pain or cough, I think cancer.
I am concerned not only for my own health, but that of my sister, 2 daughters, nieces and new baby grandaughter that will be born in August. I will be meeting with an oncologist April 2nd to see what she would recommend. I am the 4th generation on my Dad's side to get BC. I learned several days ago that sometimes with the BRAC 1 or 2 the age of the relative gets younger with more family members being dx. Not sure the age of my great grandmother, but my great aunt was 63, my aunt 52 and I was 47.
I think somedays our "worry factor" is better than others. Remain positive, pray, try to eat healthy and exercise. (oh, and pray somemore!) This is something we have control of and it can make a difference.