Amy Byer Shainman, also known as the BRCA Responder, has established herself as a leading advocate for those with BRCA and other hereditary cancer syndromes. In her touching new memoir, “Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew,” Shainman details her story of discovering her grandmother Lillian passed away at the age of 33 from cancer and that the BRCA gene mutation (making them more likely to get cancer) runs in her family and she is a BRCA1 gene mutation carrier.
In 2010, Shainman had two prophylactic surgeries to drastically reduce her cancer risk; a nipple sparing, skin-sparing mastectomy with reconstruction and oophorectomy with hysterectomy. Through her advocacy Shainman has been providing a call to action on the importance of doing research and speaking with a certified genetic counselor to make the best health care decisions for oneself.
“Resurrection Lily” presents a vulnerable look at Shainman’s experience with the BRCA gene mutation as well as her devotion to advocate for and educate others facing the same daunting reality as she once did while providing lifesaving information from her doctors, top medical experts in cancer genetics and whispered guidance from her grandmother.
I had a chance to interview her to learn more.
Why did you decide to write this book?
When I started to journal about my experience in 2010, that's when I got the initial idea to write this book. I realized that I could not live with myself if I remained silent. A book sharing my experience along with expert input, would help people connect the dots surrounding BRCA and hereditary cancer and possibly even save lives.
Why is it important for people to be aware of the BRCA gene mutation?
I encourage people to educate themselves about BRCA gene mutations as the knowledge they obtain could ultimately save their life or the life of someone they love. Everyone is born with two BRCA1 and two BRCA2 genes. It's when you are born with a BRCA1 or BRCA2 gene mutation that you have an increased risk of developing certain cancers. Men, as much as women, need to pay attention. There are different ramifications for men. However, MEN can carry and pass on a BRCA 1 or BRCA 2 gene mutation to daughters AND sons. With that said, undergoing genetic testing itself is always a personal choice. If you feel your genes are putting you at increased risk for certain cancers, the best first step is to speak with a certified genetic counselor. A certified genetic counselor is the most qualified expert to assess individual cancer risk, order the appropriate genetic testing panels (if any), and interpret those genetic testing results (positive or negative). To speak to a certified genetic counselor by phone or in person go to the: National Society of Genetic Counselors - findageneticcounselor.com
How can people decide what the best option is for them if they do have the BRCA gene mutation?
Let's rewind a bit...first, you need to confirm that you do in fact or you do not carry a BRCA gene mutation before you weigh any options or make any health decisions. There are so many direct-to-consumer genetic testing companies on the market, and many of these genetic tests do not include all of the BRCA gene mutations (there are more than one thousand BRCA gene mutations and some of these direct to consumer companies only test for a few of them). Unfortunately, I talk to people each week who do not understand this; that many direct to consumer genetic tests are limited in scope or not even clinical grade genetic tests. I always ask someone: Do you have a physical copy of your genetic test result? Did you receive certified genetic counseling? Where did you have your genetic test? Do you know what your genetic test results mean? Who explained this to you? Genetic tests are only useful if they provide true meaning, which is why I am so passionate about certified genetic counseling being so crucial before and after any type of genetic testing.
If you indeed have confirmed through clinical grade testing that you do carry a BRCA gene mutation, please know support is out here, and you are not alone! A certified genetic counselor can walk you through your options. An oncologist who specializes in high-risk patients or a specialized hereditary cancer clinic is also a smart place to start. Resources are in my book. Choices surrounding cancer risk management are so profoundly personal; the best option for someone else is not for me to say. There is no right or wrong answer. Some women choose prophylactic surgeries, and some do not. The important thing is to educate yourself, know your medical options, understand your necessary health screenings, and do what is right for you. You can also visit my website to learn more and keep up-to-date on the latest BRCA news http://brcaresponder.com/
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