Three storytellers offered their experiences with BRCA mutation at a Basser Center for BRCA event in New York City.
“There are a few aspects of this story that are a bit unsettling. I’m sorry about that, but I’m not going to pull any punches, it’s a real story and if it’s going to be told, it has to be told the way it happened.”
This is how Rob Sorin opened his story at the “An Evening of Storytelling” event, presented by the Young Leadership Council (YLC) of the Basser Center for BRCA, part of Penn Medicine’s Abramson Cancer Center.
The room of sponsors, family, friends and colleagues were treated to a night of personal stories from three individuals touched by BRCA mutations. Each speaker touched on their personal journeys as a mother, a caretaker, and a single woman embarking into the dating world post-preventative surgery.
Each story was laced with humor and heartache, but they all spoke to the promising future that research will provide for future patients and the newly BRCA-positive population.
“In my case I wasn’t looking for the mutation at all, I feel like it sort of found me,” storyteller Taylor Harris told CURE. “And just now I got to meet a doctor who is doing research on BRCA pancreatic cancer, which I’ll have to go see a doctor at a pancreatic cancer center this year. For me it’s seeing all the pieces of the puzzle come together that’s really cool, there are certain people who have a strong family history there are different reasons and different ways you can come into this story.”
Discovery of a BRCA gene mutation typically follows diagnosis of breast or ovarian cancer in either their first or second recurrence. But for Harris, her discovery came after a terrifying series of doctors’ visits following her 2-year-old son’s sudden illness. With no answers, and doctor’s mystified, her son visited a geneticist, an endocrinologist, a speech pathologist, an occupational therapist and a developmental pediatrician. Months after the search began, physicians found a secondary genetic discovery: the BRCA2 mutation in her son and herself.
Lindsay Avner, the first and youngest woman in the country to have a preventative double mastectomy, was Harris’ best friend growing up. Now, with her best friend who dedicated her life to supporting women on their journey, founding Bright Pink, Harris would be one of those women, too. “In the first phase I cried and I panicked. I thought maybe we found this out too late and there is already cancer hiding in my body.”
“In the second phase I went numb because 40 weeks of round-the-clock morning sickness does not leave a lot of time for musings on BRCA,” she continued. “But later after I gave birth to our third child, Juliet, I wondered if we’d gone too far. What if this genetic testing, this search to try to understand our son had opened up this Pandora’s box? Maybe none of it even mattered, no one could tell me if I could get cancer.”
Harris’ journey is one laced with questions and confusion. Not just around her son’s health, but her own future when it comes to testing and exploring the results for her daughters. “I tried to flip those what-ifs on their heads and ask, ‘What if these crazy circumstances are somehow being worked together for good?’ Not a painless good or an easy good, but still something good. What if it is something bigger than me?”
The Caregiver’s Perspective
Sorin told his own story from a caregiver’s perspective. His wife’s journey began in the early days of the BRCA discovery. A lawyer by training, Sorin found that his workplace skillset came in handy taking on the role of researcher.
“I was going to handle the mental task of being the advocate, doing all the research,” he said. “(My wife) was going to fight the physical battle. I was going to push her doctors to think about her case individually.”
Plowing through pages and pages of the latest research, at the time, gene testing was not on doctors’ radar. Though expensive and not covered by their insurance, it was a no brainer for Sorin and his wife to pursue since it could inform a new course of treatment. After chemo, Sorin’s wife, Helene, was scheduled for surgery.
Then, on a normal Tuesday morning, Helene went to work on Wall Street and the Towers fell mere hours later. Sorin remembers thinking, “I spent the last eight months doing everything I could to save her and for the next eight hours I thought I had lost her.”
Helene made it out of lower Manhattan, having ensured that everyone from her floor got out first. Her surgery was one week later.
He mentioned that while the role gave him a sense of control, of being part of the solution, as a caretaker he needed support as well. “I felt it was my responsibility to be positive and always offer a pep talk when Helene was scared. But I think as a spouse my fear was no less intense than Helene’s,” Sorin said. “I decided to see a therapist who was an expert in this area. However you can, I think it is very important for a caregiver to have a caregiver.”
Helene went on to carry the torch in the Salt Lake City Olympics and live for 12 years cancer-free. A self-identified lump led to another malignancy, a case so rare, doctors made a case study of Helene’s second fight with the disease.
After beating the disease for a second time, Sorin and his wife discovered the Basser Center. Their daughter, Jenny, decided to have her genetic counseling at the center and discovered that she is positive for the BRCA mutation.
“Unfortunately, cancer is complicated and there is an art to fighting it. The good news is that the science is growing and the art is shrinking,” Sorin said.
As Jenny begins her journey living with the BRCA mutation, Sorin says that his role as a caregiver has shifted. “Jenny needs to be empowered as a young adult to make her own decisions about her body. I’ll always be there and offer advice if she should ask, but ultimately, she will decide what is best for her. Most importantly, Jenny has knowledge and knowledge is power. Jenny has choices, and hopefully with more advances from Basser she will have more choices.”
The evening concluded with a story from Erika Stallings. Her story provided a bit of levity to the evening, focusing on her journey of a woman post-surgery entering the dating world. Having workshopped her story with the Upright Citizens Brigade, a comedy and improve troupe in New York City, Erika hit on all the emotional hardships from discovery through reconstruction, and highlighted the lightness that can come with recovery.
For instance, what would a potential partner think of her new breasts? She set out to discover this. Although she ultimately received validation from her partner after an evening on the town, Erika’s story began when she left to begin her evening, and saw the image of a woman proud of the body she was walking out the door in.
Basser Center Research
“You guys are incredible, you inspire me, and you inspire everyone in this room this evening and from the bottom of my heart thank you for sharing with us.” The sentiments of Kim Reiss Binder. M.D., the recipient of the Young Researcher Award made possible by the generous donations of the Basser Center.
Binder’s research focuses on pancreatic cancer in relation to the BRCA mutation. Patients who test positive for the mutation and have pancreatic cancer respond better to treatment; some are even able to come off of chemo and switch to a pill regimen.
Speaking to CURE, Binder says that fortunately pancreatic cancer is rare with the BRCA mutation, but the knowledge around the connection is vital to treating this patient pool more effectively. “The big piece here is that if you identify (pancreatic cancer and a BRCA mutation) and treat it differently, (patients) will live longer and they will be better. But you have to treat them the right way.”
“What events like these do, is they expand that outreach and awareness,” she added. “I’m very hopeful and elevated by the fact that it is coming to the forefront, because even though it is relatively rare if we don’t know about it we’ll treat it wrong.”