In the world of genetics, we often use the term Knowledge is Power. Gaining that knowledge usually starts with a genetic counseling appointment, then spreads into research, support groups, podcasts, you name it.
When it comes to those of us with hereditary cancer risk, we can often be hungry for even more knowledge. One of my favorite resources is reading books–especially memoirs–I find it so helpful to learn through the eyes of others’ experiences.
When I got my positive results for carrying a BRCA1 gene variant, significantly increasing my risk for certain cancers, my genetic counselor sent a follow up email with reading recommendations. While she gave me direct links to specific things I’d asked about, such as how to talk to my kids about surgery, inheritance, and more, she also sent along a list of 36 books, curated by University of California, San Francisco (UCSF).
The list is comprehensive, and includes BRCA- and male-specific recommendations, as well as other hereditary cancer syndromes like p53 and Lynch.
I’ve made it through only one in this list so far, Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I never Knew.
The title alone was enough for me to place my order on Amazon Smile. I too, had a grandmother I never knew, who died of ovarian cancer when she was just 46. Her spirit was right there with me when I first picked up the phone to call family members to learn more about hereditary cancer on my father’s side of the family. I devoured the book, learning more about the ways different people handle the news of hereditary cancer for themselves and their loved ones, as well as surged with courage after the poignant reminder that I’m not alone in my sometimes-overwhelming decision-making.
Next on my reading list from UCSF is Annie Parker Decoded: The Story that Inspired the Film and Twisting Fate: My Journey with BRCA―from Breast Cancer Doctor to Patient and Back.
I’ve also read a couple that aren’t on the UCSF recommendations, including Dangerous Boobies: Breaking Up with My Time-Bomb Breasts, where comedian Caitlin Brodnick takes her BRCA mutation into her own hands. With chapter titles like “I Can’t Shower. Now What?” and “Oh Shit. I Forgot About My Ovaries,” Brodnick pulls what feels like bar-stool conversations into an organized, compassionate, and real look at the decisions BRCA mutation carriers face.
Memoir of a Debulked Woman: Enduring Ovarian Cancer is one I didn’t know I needed and was found while browsing my local bookstore. It’s a gut-wrenching, eye-opening, and research-heavy ride through ovarian cancer diagnosis. (This one has its fair share of dark humor, too–peppering in needed breaks from such a heavy topic.) Now, this one is not hereditary cancer specific, but it does touch on BRCA mutations, and cured my irresistible need to know what living with ovarian cancer might look like.
Similarly, I needed to know what breast construction might look like, and I picked up the highly informative The Breast Reconstruction Guidebook. In preparation for my prophylactic surgery consultations, I was able to highlight and dog-ear the parts that I wanted to ask the surgeons.
Reading and resources is just one of the ways my genetic counselor, and the entire team at Genetic Support Foundation, offers support around genetic healthcare. If you would like to learn more about scheduling an appointment, check out the genetic counseling page here.
Do you have a reading suggestion? Comment below!