Bard 1 positive

BG46TN

Anyone else here Bard 1 gene positive? I was diagnosed with TN BC in mid Oct, started chemo last week...

the genetic counselor just called me, I have a mutation in the Bard 1 gene which is a high risk for breast cancer.....she also said it does sometimes indicate a risk of ovarian cancer but it's not as highly established, although when I look online it doesn't mention ovarian, so we'll see...it probably won't change my chemo treatment but could affect surgery options. I guessing they will push a double mastectomy...I meet with my surgeon in January to discuss options...

I did have a petscan a few weeks ago and Im glad I did now ( I was scared about the results) but at least now I know I am clear except for the breast that we already know about...

ReneeChicago

Hi. I also have tested positive for BARD1.

I am 40 and no cancer, but my mom was diagnosed at 43 and has passed away... so I got tested. I've seen a genetic counselor and 2 genetic oncologists. Both oncologists gave me different recommendations. #1 said increased surveillance along with tamoxifen. #2 said increased surveillance, remove my mirena iud, lose some weight, and have prophylactic bilateral mastectomy ... and added that she thinks I am not a good candidate for tamoxifen (history of anxiety and depression, chronic migraines). I've thought a lot about it and I'm going with #2. I can't live with the threat of increased risk of breast cancer weighing so heavy on me.

I'm so glad to hear that your PET scan results were good!

Did you get a final answer re: ovarian cancer? Both of my oncologists said that the relationship isn't very clear re: ovarian cancer.

Good luck

Moderators

ReneeChicago, what a big decision you've made. You may find these videos helpful: Prophylactic Mastectomy and Reconstruction Video Series. We're thinking about you!

megomendy

Hey, I'm Becky's sister and I have BARD1 gene also. There are six girls in our family. One other sister is positive for BARD1 but does not have BC. One other has tested negative. The last two have not gotten results yet.

BG46TN

HI Meg :-) LOL

I_Spy

Hi this is an old thread but just thought I would post. I tested positive for the BARD1 gene mutation. My mother died of bc at age 53 (no test for gene mutations at that time). I got DCIS in my right breast and after my bmx they found LCIS in my left breast that hadn't shown up on any imaging: mammogram, breast MRI, ultrasound. So that's my story. Doing fine after the BMX and reconstruction. Good luck everyone.

Erikag726

I too tested positive for Bard 1. I did genetic testing after I was diagnosed. My mom was 57 when she was diagnosed with the same type. Not sure yet what I am going to do about my ovaries. I will finish my chemo in Feb. and then start radiation.

ashb123

Hello. Just got my genetic results back today and was positive for the BARD1 mutation. I’m 32 and do not have BC but have a strong family history. My maternal grandmother was diagnosed in her 40s, both her sisters had it as well as her mother. My mom kept having abnormal screens and opted for the bilateral prophylactic mastectomy instead of starting tamoxifen due to family history. I am the first in my family to test positive for this since the previous generation this gene wasn’t known yet.I have an appointment with a specialist in a couple weeks and I’m just unsure what to expect.

Hopeful82014

You may want to check out the website for FORCE (Facing Our Risk of Cancer Empwered) as well as BCO. Much of the material offered by FORCE focuses on the BRCA1/2 mutations but there is information on other high risk mutations that you may find helpful.

ashb123

Thank you!