Cancer Genetics Matters

Top 3 resources every BRCA carrier should know about

The internet is full of information and when it comes to healthcare, some of it’s good and some of it…well it’s not. While others may be scraping the barrel for facts on less common hereditary conditions, there’s plenty out there on Hereditary Breast and Ovarian Cancer. Here are the top 3 resources I think every BRCA carrier should know about about.

"At risk? BRCA1 or BRCA2 positive?" pamphlet 1. Willow Breast & Hereditary Cancer Support

Willow is a Canadian nonprofit that started in 1994. It started with the intention to provide information and support for women diagnosed with breast cancer. Additionally, they hosts a great annual event called Breast Reconstruction Awareness (BRA) Day which happens in mid October. In 2010 Willow expanded their services to include one-on-one and group peer support as well as provides information for BRCA carriers. Of its fact sheets and resources my highlights are their guide “breast cancer in the family: understanding your risk” and their letter for informing family members about genetic test results.

2. Facing our Risk of Cancer Empowered (FORCE)

FORCE is an American nonprofit that started in 1999. It was the first North American patient support organization for BRCA1 and BRCA2 carriers and it’s famous for coining the term “previvor”: a survivor of the predisposition to cancer having not had the disease. FORCE hosts an annual conference in mid June. Their website has a lot of information describing hereditary cancer (inherited risk for cancer), cancer risk management (detailed screening and prevention options ), cancer treatment options and information on fertility, parenting and nutrition. They also have a toll-free helpline. The only word of warning is that screening recommendations are US-based and may vary in Canada.

3. Be Bright Pink

Be Bright Pink is an American nonprofit organization started by Lindsay Avner at age 23. Lindsay was the youngest patient in the US at the time to undergo a double mastectomy with reconstruction upon learning she carried a BRCA1 mutation. This website’s target audience is younger women with BRCA mutations. Be Bright Pink focuses on the prevention and early detection of breast and ovarian cancer while providing support for high-risk individuals. Naturally there are plenty of educational and support network resources available including young patient stories and support groups. Again, being an American website some of their documents such as their “Empowered Patient Guides”, although beneficial, may not be fully applicable to the Canadian medical system.

If you know of any other resource that has helped you in some way, I’d love to hear about it!

About the author

Justin Lorentz

Justin is a genetic counsellor and Male Oncology Research and Education (MORE) Program Lead.

Have a question about this post? Get in touch.