High Risk Mutation (ie. BRCA, ATM, RAD51D)

@rochellec13, I believe that @gwinter has a RAD51C mutation. @corinneberg may be able to connect you with others as well.

@rochellec13 I do! Did you have to do anything special, surgically?

Hi Rochellec13! I would recommend you meet with a genetic counselor if you haven't yet. The National Comprehensive Cancer Network (NCCN) states that with a RAD51C mutation there is unknown or insufficient evidence for breast cancer risk but an increased risk of ovarian cancer. They state to "consider a Risk Reducing Salpingo Oophorectomy (RRSO) at 45-50 y". This age recommendation can change based on family history. The surgery can be done laparoscopically and has a relatively short downtime. I help run a support group through Facing Our Risk of Cancer Empowered (FORCE) and we meet regularly at the Dan Abraham Healthy Living Center (DAHLC). Our next meeting is June 6th at 7pm. We would love to have you!

I agree. I would highly recommend genetic testing following the diagnosis of ovarian cancer.At the institution where I received my primary care, they advised me to have germline testing. In addition, I participated in a study that provided genetic information about the tumor itself which I have found helpful in my understanding of my specific diagnosis. It was also helpful to me to provide my daughters with this information for their health and well-being.

@rochellec13 with no Brca 1 or Brca2 but the RAD51C I decided to have a laparoscopic hysterectomy and Oophorectomy (I only had one ovary). Never again thank heavens. Down time is horrendous not the pain the patience! Cannot move much for almost 4 weeks!
But it was my choice!

Facing Our Risk of Cancer Empowered (FORCE) meetings are held in Dan Abraham Healthy Living Center (DAHLC) in at the Mayo Clinic Rochester campus.

@corinneberg do you meet regularly? And can people join the meeting when visiting Mayo Clinic, Rochester, in other words not as regular attendees?

Colleen thank you! Yes, we meet regularly and anyone is welcome (anyone with risk even if they don't have a mutation, family members, care givers, friends, etc). Our next meeting is Thursday June 6th at the DAHLC basement level in one of the conference rooms (seems to change rooms a bit). We do take a break in the summer so this will be the last meeting until the fall. 🙂 Please reach out to me with any questions!

I see there hasn't been much new information on this thread - but I'm BRCA2+ Triple negative (Dx Nov 21) but had 'border-line' ovarian cancer about 35 years ago. Only family member to have cancer was father (dx when he was 60) and he passed away at 96 YO - treated only with surgery. My ovarian ca was also only treated with surgery since it was very early. Since my TNBC dx, I've had chemo and Bilateral (going flat) and now getting ready for radiation - starts next week. After that I was told I'd be on maintenance meds for a while (probably Lynparza). My son has tested positive but my daughter is negative; I'd advised my siblings to get tested but have yet to hear back if any of them are going to get tested. I only have one sibling that has children so I strongly suggested she get tested - which I think she has scheduled.

How has your knowledge of mutation impacted your treatment choices and changes to lifestyle? I'm confused about how much my diet will impact what I have. I eat pretty healthy - limiting processed foods, sugars and eating plenty of veggies, grains and fruits and limiting my red meats - but how far do you go with diet? I've read about people that go completely all-green; doing intermittent fasting; all keto - is there anything that proven that will really impact recurrence of cancer when it comes to diet?

You might take a look at the MD Anderson article on statins and triple negative BC. My cholesterol was a little high, so my Dr could justify a statin. I take Lovastatin. I drink green tea most days, take turmeric and eat healthy, as you do. I have the ATM gene and TNBC. No family history. I hope everyone knows that the Bw guidance is that everyone with TNBC should get genomic testing. Daughter has it and sister does not, but glad I knew so they could be tested.

Have anyone tested positive for the RAD51D gene mutation?