Women and men who discover they carry a BRCA gene often are faced with many difficult questions and will likely require support as they move forward. As the number of women who find they carry a BRCA gene continues to grow, several organizations are finding ways to offer support to women (and occasionally men) both on- and off-line.
Benefits and Drawbacks of Online Support
Online support can be extremely helpful for answering questions that BRCA+ women or their family members have in real-time. Many of these groups, which often run on Facebook, provide access to a large number of women, both locally and globally, who are grappling with the same questions you might be and can also provide insight into options and research you may not know about.
The drawbacks of online support are that they require comfort with computers and online interactions, and there is no guarantee that your data will be 100% protected. That being said, many women find these groups to be very helpful and supportive, particularly when they first learn about their BRCA status.
Support for Men
Men with the BRCA gene can find benefit from connecting with a supportive network. Although options for support for men with the BRCA gene are currently more limited than they are for women, the Prostate Cancer Foundation BC offers a variety of excellent resources for men at high risk of prostate cancer and living with prostate cancer, including information, specialist talks, walking clubs and support groups. Men who are interested in these groups do not need to have been diagnosed with prostate cancer to attend. They are also encouraged to attend the groups with their partners, if they wish.
Support for Women
Local Facebook Support Groups
The Risky Genes Facebook groups are run by local volunteers, as part of the Hereditary Breast and Ovarian Cancer (HBOC) Society’s Risky Genes Awareness program. HBOC is a non-profit Canadian organization dedicated to promoting awareness of all the genes that increase risk for women’s cancers. Risky Genes groups are not limited to BRCA1/BRCA2 positive women or the Jewish community but include a large number of other genes that are found to contribute to HBOC syndrome. Currently the local groups are fairly small, so they might see less activity, but they are new and growing.
Risky Genes Vancouver https://www.facebook.com/groups/378063976331720/
Risky Genes Victoria https://www.facebook.com/groups/169528807054506/
Canada-Wide Facebook Support Groups
The BRCA Sisterhood Canada was created in July of 2013 as a space where women in Canada could go and be able to relate on more levels then just BRCA. BRCA Sisterhood is about building connections between survivors, previvors, and those currently fighting. It is a place to provide support to all women; regardless, of where they are on their journey.
The group is very active and currently has just under 700 members across Canada. Members often ask questions, share posts about new research and studies and opportunities to meet, share stories and support each other in thinking through important decisions about prevention and care.
Facebook Support Group Outside of Canada
Young Previvors started as a small, private support group on Facebook, but has grown to include over 2000 members, many of whom post daily.
They have a focus on supporting young women through the realities of knowing their genetic status before a cancer diagnosis. Their private support groups are a place to laugh, cry, ask advice, share stories, and finally, finally find other women who understand.
Online Support (Non-Facebook)
For women looking for online support who do not have a Facebook account or do not wish to use Facebook, Facing Our Risk of Cancer Empowered (FORCE) is a US-based non-profit organization that offers online message boards for women looking to discuss issues related to carrying hereditary cancer genes. Their message boards are mobile compatible, you can post publicly or message privately or read other posts anonymously. You must set up an account on their website in order to post.
Peer-to-Peer Telephone Support
Sharsheret, a reputable charity based in the United States that supports Jewish women through all stages of the BRCA journey, offers a peer support network to anyone who needs it anywhere. This is a large and highly established network that can match women with peers based on whatever stage of cancer (or BRCA testing) that they are and can tailor their matches to highly specific questions. You can fill out their online form and a staff member will be in contact to assist you. Sharsheret says that they can also offer supports to people of other genders, including men, but that their supports primarily cater to women.
Facing Our Risk Empowered (FORCE) also offers a Peer Navigation Program to women living in Canada (and the United States). The program connects cancer survivors, people at high risk and their caregivers to support and resources personalized for their situation. This program is for individuals who have just learned about their hereditary cancer risk as well as those who have known about it for many years. Program members receive personalized and confidential phone support and a resource guide filled with expert-reviewed resources. This program is not specific to members of the Jewish community. To sign up, you must fill out an online form and are matched with a trained Peer Navigator who shares a similar experience to your own.
Local Face-to-Face Support
The Hereditary Breast and Ovarian Cancer (HBOC) Society is supporting the Risky Genes groups to develop local face-to-face support for BRCA+ women. At present information on these groups is limited.
International Face-to-Face Support
The Breasties is a nonprofit organization dedicated to supporting young women affected by breast and reproductive cancers through community and friendship. It is not specific to BRCA carriers, but is inclusive of carriers of genetic mutations that predispose women to cancer. The Breasties call themselves an all inclusive community for survivors, previvors, thrivers, and caregivers.
They host weekend wellness retreats, day-events and meetups in different cities across North America as well as connect women around the world through social media.