In honor of this year’s Hereditary Cancer Awareness Week, Everyday Health hosted a Let’s Talk about Hereditary Cancer Twitter Chat, where experts, patients, and advocates answered our questions on gene mutation, how to talk about it with family, misconceptions surrounding hereditary cancer risk, and more. The chat featured:
Basser Center for BRCA Penn Medicine’s resource center specializing in the research and treatment of BRCA-related cancers (follow @BasserBRCA)The Breasties An online community made up of breast and gynecological cancer patients and survivors (follow @the_breasties)Brianna Majsiak An editor at Everyday Health focused on breast and gynecologic cancer, and cofounder of The Breasties (follow @brianna_majsiak)Dena Goldberg A board-certified genetic counselor and educational content creator (follow @DenaTalksDNA)FORCE (Facing Our Risk Empowered) A nonprofit dedicated to educating patients and families about hereditary cancer and creator of Hereditary Cancer Awareness Week (follow @FacingOurRisk)My Gene Counsel An organization, founded by Ellen Matloff, which provides online genetic counseling to patients (follow @MyGeneCounsel)Nancy’s Point An author and BRCA blogger (follow @NancysPoint)National Society of Genetic Counselors (NSGC) An organization that supports the professional development of genetic counselors (follow @GeneticCouns)Ohio Association of Genetic Counselors (OAGC) An organization that connects and supports professionals in the field of genetics within Ohio state (follow @OhioGenetics)Tiffiney Carter A genetic counselor specializing in cancer genetics (follow @TiffineyCarter)
For highlights from the #HereditaryCancerRiskChat, read on. RELATED: Speaking Genetics: A Glossary of Cancer Risk Gene Everyday Health: How do you feel about the fact that there’s now a week dedicated to hereditary cancer awareness every year? NSGC: It’s a great time to pause and celebrate families. Many families do not yet know the cancer in their family has an inherited component. Creating awareness is extremely important to help others protect their health. OAGC: About 5 to 10 percent of all cancers fall into this category, and thus anything that can bring awareness to hereditary cancer is a win and makes me happy. Tiffiney Carter: I’m so excited that there is a national spotlight highlighting this very important week! So many people are not aware of the hereditary causes related to cancer syndromes other than BRCA1 and 2 and Lynch syndrome. It’s important for the public know. Tiffiney Carter: As a genetic counselor (GC), my patients often find out their genetic status by genetic testing through a personal diagnosis of cancer, family member sharing their results, or personal risk assessment. Nancy’s Point: Not surprised, but at same time, surprised. Scared, yes. Who wouldn’t be? Lots to process and figure out. My Gene Counsel: For many people they may also feel shocked, relieved, angry, or sad. Whatever you’re feeling is the right feeling! Let yourself have those feelings and know that you are supported. My Gene Counsel: And you thought it was hard to talk about politics with your family! Be open, be honest, meet people where they are and at their pace, if possible. Brianna Majsiak: I think the family conversations are especially tricky. Mine had a lot of blocks around this topic because of grief. My older brother has done his testing and keeps up with screenings. Hoping my younger brother feels comfortable doing the same. FORCE: Genetic testing is a very personal decision. The best you can do is educate your family and empower them to make informed decisions. Dena Goldberg: It’s much more common than we once thought and having this information can be lifesaving! Also, anyone can have a mutation regardless of their ancestry, so everyone should be offered the opportunity to test! OAGC: I want more people to know you can inherit cancer risk from your mother or your father, regardless of the type of cancer, because you inherit 50 percent of your genetic information from each parent. Tiffiney Carter: You don’t have to wait until someone else in your family decides to get tested. You can get a risk assessment yourself to determine if you are at increased risk for breast, ovarian, colon cancers, [or others]. You can get tested yourself. Ask for GC referral. NSGC: Meeting with a genetic counselor does not obligate you to have a genetic test. The goal is to understand what the test can or can’t tell you, how to use it in your medical care and make an informed choice about testing. Basser Center for BRCA: Weighing whether to test or not, and the timing, can be really stressful. If a mutation is present, it’s been there all along, however, we would now have the ability to inform risk and care. And this care is only improving the more we innovate. The Breasties: Talk to fellow community members if you’re feeling overwhelmed, frustrated or confused. There’s a whole community here to support you! RELATED: 3-Time Cancer Survivor Talks About Childhood Cancer, Chemo Side Effects, and Living With TP53 OAGC: Genetic counselors are a very helpful resource about genetic testing. To find a GC, go to NSGC.org. FORCE is another amazing hereditary cancer reference: FacingOurRisk.org. NSGC: @GeneticCouns has blogs, podcasts, and educational resources to help you: AboutGeneticCounselors.org and FindAGeneticCounselor.org. Brianna Majsiak: I found @MyGeneCounsel to be extremely helpful in keeping up to date on my gene mutation. It’s like a personalized Google alert for your genetic testing results.
