About

Member has chosen to not make this information public.

Posts (9)

Wed, Nov 20 4:30pm · Genetic tests available for breast cancer detection in Breast Cancer

Please have the daughter see a genetic counselor. They will be able to give her options that insurance should cover under the NCCN guidelines with a first degree relative with a cancer. Best

Tue, May 21 8:14am · High Risk Mutation (ie. BRCA, ATM, RAD51D) in Breast Cancer

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!

Mon, May 20 8:25am · High Risk Mutation (ie. BRCA, ATM, RAD51D) in Breast Cancer

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!

Thu, Apr 25 8:08am · Gynecological neuroendocrine cancer in Neuroendocrine Tumors (NETs)

I'm sorry to hear about your recurrence. I can understand the emotions and tearful times. Talk to your provider. Maybe they could give you ideas to help improve emotions. I know it's difficult. Exercise (even minimal) helps my emotions. I know some doctors prescribe a low dose anti-depressant to help with the flow of emotions as well. No shame in figuring out what works for you! Best

Tue, Mar 19 9:11am · High Risk Mutation (ie. BRCA, ATM, RAD51D) in Breast Cancer

Thank you Colleen! This is a great resource.

Tue, Mar 19 9:10am · High Risk Mutation (ie. BRCA, ATM, RAD51D) in Breast Cancer

Wow! I haven't met anyone yet with both BRCA1 & 2 (although I have heard of it)! Do you live in Rochester? I'd love to meet you. 🙂

Tue, Mar 19 9:03am · ATM Gene Mutation and Care in Breast Cancer

I do not have ATM but have BRCA2 and had a bilateral prophylactic mastectomy at age 25. I had family members die of breast cancer and didn't want that hanging over my head. You do what is best for you.

Fri, Mar 15 9:55am · High Risk Mutation (ie. BRCA, ATM, RAD51D) in Breast Cancer

I'm BRCA2 also! I am a "previvor" as I found out at age 25 and had a bilateral mastectomy. They have meetings in the cities too. Not sure if you are close to there? Facing Our Risk of Cancer Empowered (FORCE) is a great resource and support too (non-profit org). Best to you. Thanks for responding.