'In Our Genes' Event Raises Research Funds, Builds Community for Those at Increased Risk of Breast and Ovarian Cancers
Last night's "In Our Genes: An Evening of Storytelling" was an event that not only raised money for research in BRCA-related cancers, but also aimed to raise the spirits of individuals who have been affected by the gene mutation.
BY Andrew J. Roth
PUBLISHED October 06, 2016
When faced with cancer or any other difficult situation in life, one of the best medicines can be to hear stories and advice from others. This was the key point Susan M. Domchek, M.D., made in her closing remarks during last night’s “In Our Genes: An Evening of Storytelling” event in New York City.
The event was put on by the Young Leadership Council (YLC) of the Basser Center for BRCA, part of Penn Medicine’s Abramson Cancer Center, and featured three speakers who told their stories of learning they — and in one case, a loved one — were positive for a BRCA mutation.
Each speaker’s story relied on humor to lighten the mood — a crucial part of the equation, according to Domchek, the executive director of the Basser Center.
“Any time you deal with a hardship, you have to find some humor and they certainly showed us that tonight,” she said in an interview with CURE.
The first speaker of the night was Caitlin Brodnick, a comedian and a writer for Glamour.com, who lives in New York City. Brodnick told her story of family members passing away and always thinking she or her siblings were next.
“As I was growing up, I had family members that were dying of cancer and my father is the only surviving person in his family,” Brodnick said to the audience of about 50.
Her father, though, didn’t view cancer as an inevitability and enrolled as a test patient for the BRCA gene at Johns Hopkins University. He found out that he was positive for the mutation, and Brodnick herself was tested soon after — she had it too. Brodnick was 25 years old at the time and had just become engaged.
“I believe the percentages have changed slightly, but then they told me, in my lifetime, I had an 87 percent chance of cancer,” Brodnick said. “That made me go 100 percent insane.”
In 2013, Brodnick drew inspiration from Angelina Jolie and decided to undergo a double mastectomy to reduce her risk of cancer.
“When Angelina came out and said she was going to have the surgery, I [thought], ‘One of the sexiest women in the world has chosen to take this in her hands and take control, maybe I can do it,’” she said.
Brodnick then chronicled her three surgeries to remove tissue and reconstruct, subsequent swelling and recovery. She drew laughs from the crowd as she spoke about how she was able to choose the appearance of her nipples and likened the entire situation to ‘renovating’ her body and the HGTV show “Fixer Upper.”
Brodnick concluded by thanking her audience and joking that she usually only performs in small clubs with just a few people in attendance.
The second speaker of the night was Jon Steinberg, the CEO of Cheddar, a media company, and former executive of DailyMail.com and BuzzFeed. Steinberg began by simply telling the audience how difficult it was to be on stage talking his and his wife’s story with BRCA.
“I do four hours of live TV a day, but for some reason this is very nerve-wracking for me,” Steinberg said. “I haven't really talked about this.”
Steinberg found out that his wife, Jill, was positive for the BRCA1 mutation in 2010 from a 23andMe test. While at work, he Googled around to learn more and immediately knew that it was bad news. The subsequent days and weeks were a bit of a blur, Steinberg admitted, but it became apparent that a mastectomy was the best option for his wife.
“I knew right away that I thought that Jill should do it,” he said, but knew that it was her decision ultimately. “And then what I struggled with a little bit was that it was her body, it was her.”
Steinberg said that his wife’s journey with surgeries was remarkably similar to that of Brodnick, the previous speaker. It took several operations to get it all right and it was a struggle for Steinberg to know what to say.
“You tell your wife that you love her, because you do love your wife — I love my wife — and you tell your wife that she's beautiful to you,” he said. “You feel like it's never enough. You feel like it's never convincing. You never quite know how she feels about her new body in this context.”
Steinberg also discussed the struggle of weighing two bad things — a mastectomy and cancer.
“Whenever you get into a situation where you're weighing terrible things, they say you're not supposed to do that, but inevitably you do do that,” he said. “I don't have a conclusion on how to think about that, but it just is something that I think goes through your head.”
Steinberg created an analogy to air travel and waiting to hear how long a flight will be delayed.
“Do you want to rebook the plane ticket immediately because you just don't trust Delta or do you like your odds of sitting on that plane?”
Steinberg and his wife have become closer as a couple, he said, because they always decide get off that plane and buy the next ticket.
Finally, Steinberg brought up stories of people he’s known in his professional life who have gone through cancer.
“It's almost shocking to me how strong and enduring and how much of a fighter some people can be,” he said. “You have to be so absolutely tireless and ferocious and be unwilling to ever give up as you face this situation.”
That theme of relentlessness followed through to the final storyteller of the night. Jessica Queller, a TV writer who has written for “Gossip Girl” and “Supergirl,” told her story of learning she was BRCA positive and her struggle to become pregnant.
Throughout her 20s, Queller’s life was going according to plan. At 31, though, life screeched to a halt: Queller’s mother was diagnosed with terminal cancer and passed away, and then she herself found out that she was BRCA positive and had a double mastectomy. The clock was still ticking, though, as she still wanted to get pregnant — her childhood dream — but knew she had to have her ovaries removed by the age of 40.
“One thing they don't often tell you about the BRCA mutation is [that] it takes all the fun and whimsy out of life,” she said.
BRCA took away a lot of things in her life, but Queller refused to let it take away her vision of being a mother.
At age 37, Queller was single and writing for “Gossip Girl.” Every month for eight consecutive months, she would go to a fertility clinic to get inseminated — none resulted in pregnancy. The most likely cause of the unsuccessful inseminations, her doctor said, was stress. She then quit her job and focused on “doing nothing but fertility treatments and yoga.”
Eventually, the artificial insemination did work and her daughter is now seven years old.
“Now, I am living both of my dreams: I am a mother and I am some version of a Bohemian artist person and my daughter is a wild child, who likes to stay up with me till midnight every weekend,” Queller said. “She prefers dessert for breakfast and she often dances on the roof of my friend Rosemary's car whenever she can get away with it.”
“The BRCA gene tried to knock the whimsy out of my life, but I am proud to say it didn't get the best of me.”
The Basser Center for BRCA had the goals of raising funds — tickets were $150 at the door — through the “In Our Genes” event, but also to provide education, inspiration and conversation.
Another goal of the event, and possibly the most important one, Domchek said, was to create and build the sense of community among BRCA mutation-positive individuals and their loved ones.
“BRCA1/2 are the best known inherited cancer susceptibility development genes, but there are others and there will only be more as we go,” Domchek said.
“BRCA1/2 is ahead of the game of having this group of individuals who, starting at 25, knew what their risk was and then figured out how to take that on and deal with it.”