Like Angelina Jolie, Jupiter mom had surgeries to avoid deadly cancer

Amy Byer Shainman is passionate about spreading awareness about hereditary cancer


Amy Byer Shainman has never had cancer — and, thanks to her proactive decisions, likely never will.

For the last decade, however, the disease has been the driving and defining force in her life.

Since 2008 — right after her older sister Jan Byer’s ovarian cancer diagnosis — this 48-year-old Jupiter mom of two and wife of WPTV anchorman Jon Shainman has been one of the nation’s most passionate advocates for the prevention of hereditary cancers.

That’s because Jan’s cancer led to Amy learning that, like her sister, she carried the BRCA 1 gene. In hereditary cancer parlance, that makes her a “previvor.”

“This gene is associated with increased risk for aggressive breast, ovarian and uterine cancers — all three of which Jan has had and survived,” says Amy.

Before Jan’s diagnosis, Amy knew nothing about hereditary cancer. Since then, she’s made it her life’s mission to spread the word.

She gives speeches, and she blogs about it on her website thebrcaresponder.blogspot.com and Twitter (@BRCAresponder). She writes about it in her upcoming memoir, “Resurrection Lily.” And she produced a 2015 documentary about it, “Pink & Blue: Colors of Hereditary Cancer.”

The acclaimed film — which will be screened on Oct. 26 at 7 p.m. at AMC CityPlace 20 — follows what Amy describes as “the moving and personal journeys of women and men who carry the genes for hereditary cancers.”

Next week’s showing will be followed by a panel discussion moderated by Jon (“My on-call emcee,” Amy jokes) and featuring local breast cancer surgeons Drs. John Rimmer and David Lickstein, as well as genetic counselor Constance Murphy.

After the film, Amy (who also appears in “Pink and Blue”) will explain all the factors she considered in deciding to undergo prophylactic procedures — a complete hysterectomy and a nipple-sparing double mastectomy with reconstruction — in 2010.

“At the same time I was watching Jan battle ovarian cancer, Kristin Hoke — who was Jon’s former co-anchor and a dear friend of ours — was battling a recurrence of her metastatic breast cancer,” explains Amy.

Hoke, like Amy and Jan, carried the BRCA gene.

But unlike Jan, Hoke wouldn’t survive — dying in 2010 at age 42.

Amy also knew that her paternal grandmother and great-grandmother had died young of breast cancer and that several female first cousins had developed breast cancer.

“I decided that while, yes, I do have this dangerous genetic mutation, I can also be proactive in greatly reducing my risk,” she explains.

So, three years before Angelina Jolie brought the topic into the national dialogue, Amy underwent preventive surgeries in March 2010 (complete hysterectomy) and September 2010 (double mastectomy and reconstruction).

Then, feeling what she describes as “a deep responsibility to share all my knowledge,” she ramped up her advocacy.

Amy credits the organization FORCE (Facing Our Cancer Risk Empowered) with helping her early efforts.

She volunteered as a FORCE outreach coordinator and immediately found her calling.

You name the crowd — high school and college students, Jewish organizations, cancer support groups (“Basically, anywhere that will have me”) — and she’ll share the details of her journey while explaining the importance of knowing the cancer risks in one’s own family.

“It’s been therapeutic for me,” she says.

She emphasizes that with hereditary cancer gene mutations, either parent can pass on the trait to offspring of either sex.

That’s why, with the BRCA gene, men have to be every bit as aware as women. Men who inherit the BRCA gene have an increased risk for developing breast cancer (“Yes — men get it, too,” stresses Amy), prostate cancer, pancreatic cancer and melanoma.

(When the Shainmans’ children — a 16-year-old daughter and 13-year-old son — become adults, Amy will explain to them their higher-than-average cancer risks. However, the decision to opt for genetic testing will be theirs.)

Also therapeutic for Amy was writing “Resurrection Lily,” which will be released in 2018 by the self-publishing division of Simon & Schuster.

The book chronicles Amy’s family’s journey with hereditary cancer — dating back to when her paternal grandmother, Lilian (Lily) Byer, died of breast cancer at age 33 in 1934.

Thus, the title has a special — and double — meaning.

In addition to being a tribute to Grandma Lily, the term “Resurrection Lily” is well known by avid gardeners. And that’s why Amy’s memoir begins with the following quote from a long-ago anonymous gardener:

“The Resurrection Lily is a free spirit of the plant world. Each plant has a mind or personality of its own, blooming where it wants, when it wants, and doesn’t bloom if it so chooses. Parts of the plant are toxic. The foliage, which can become rather lush, eventually dies back, without any sign of bloom. Weeks, and even months, may pass, and all may have been forgotten. Then, seemingly overnight — thin, naked and pink stalks emerge from the ground — and within a few days it is covered with lovely, lily-shaped blossoms.”



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