Face of TBBCF walk looks for common ground
Published August 19. 2018 7:22PM | Updated August 19. 2018 10:07PM
By Martha Shanahan Day staff writer email@example.com martha_shan
With at least four distinct genetic types and even more subtypes, each with their own causes, paths for treatment and prognoses, there is no one way to have breast cancer.
Some people who undergo treatment can be rid of cancer for the rest of their lives. Others find the disease comes back or spreads. Some people with a breast cancer diagnosis jump right into the ocean of pink fundraisers and “awareness” efforts promoted by breast cancer foundations. Others will stay incognito, preferring to cover bald heads with wigs and avoid the conversations that come with disclosing their diagnosis.
So, when the New London-based Terri Brodeur Breast Cancer Foundation asked Johanna D’Addario of Cromwell to be the face of the annual fundraising walk that generates the bulk of the money the foundation uses to fund research grants, she hesitated.
“I’m not the one that has ribbons everywhere and paints my hair pink,” said D’Addario. At a family Easter gathering that fell a couple days after her oncologist told her she had breast cancer in 2015, D’Addario and her husband didn’t even tell her family members about the diagnosis.
“It was, like, Easter,” she said in an interview last week. “So, we put on a happy face.”
Breast cancer, which enjoys a high profile in the United States thanks to organizations such as the American Cancer Society and the Susan G. Komen foundation, wasn’t even the first kind of cancer that had disrupted D’Addario’s life. Faced at age 26 with a positive test for a genetic mutation that causes a high risk of developing the same kind of stomach cancer that had killed her father and grandmother, D’Addario had a surgery in 2010 in which the surgeon removed her stomach and connected the end of her esophagus to her small intestine.
Her brother, aunt, and uncle all tested positive for the mutation and also underwent the same surgery as a preventative measure.
In D’Addario’s stomach, the surgeon found 32 spots of the cancer, in its early stages but still validation enough that her decision was correct.
“I was like, OK, I did the right thing,” she said. “The breast cancer was not even on my radar.”
Only a few years later, D’Addario’s doctor — Erin Hofstatter, an oncologist at Yale-New Haven Hospital Cancer Genetics & Prevention Center — was telling her the news. Invasive lobular cancer in her right breast.
“I remember she sat down and said, ‘Well, we have a lot to talk about.'”
Hofstatter, a 2014 recipient of one of the $100,000 research grants the Terri Brodeur foundation distributes every year, had encouraged D’Addario to get an MRI at age 31, five years before the recommended age for people with her level of risk for developing cancer.
Feeling discouraged, but lucky that she was able to take action early and wouldn’t need chemotherapy, D’Addario upended her life to attack the cancer. She took medical leave from her job at Quinnipiac University and underwent a double mastectomy and reconstructive surgery.
Six months into her marriage, D’Addario spent that summer in pain, bored and worried for the second time in her life about how the surgery would change her life.
“I went on two walks every day, and… like, watched my plants grow,” she said. “It was a rough summer. It changed our sex life and changed my body image.”
Now working a new part-time job as a physician’s assistant at Yale-New Haven Hospital, D’Addario said she still struggles to predict when life will get back to normal, or if it ever will.
She is working with her doctors to determine whether having children, a dream of hers since she was a child, will be possible, and when. She travels, works and still goes on walks. She is undergoing hormone therapy and spends a lot of time in doctor appointments.
But because of the early diagnosis and a straightforward treatment regimen, D’Addario said she and her husband still worried there wasn’t enough to connect her with other breast cancer survivors.
“We said, ‘It’s not really fair,'” she said. “I was diagnosed early, I was treated. I look normal on the outside, and I’m healthy. And we know that other people aren’t as lucky. I don’t want to go out there and say breast cancer is fine and everybody can get through it, because I know not everybody is as lucky as me.”
But D’Addario thinks people touched by breast cancer share some things in common: the ever-present fear that it will come back after treatment, and the realization that they’re a different person than before they were diagnosed.
“I still feel like I can tell people that breast cancer changes you, no matter what you have to go through,” she said. “I’m a different person than I was in a lot of ways. I feel like I can never be as carefree as I used to be. It’s always there in the back of my mind…you don’t feel like you’ll ever be totally healthy again.”
She has been writing blog updates posted on the foundation’s website in the months leading up to the walk, and will give a speech after walking a half marathon on a team with Hofstatter.
She said also hopes to share something else with the hundreds of people who will walk a quarter, half or full marathon on Oct. 6 to benefit the foundation: optimism that funding research like Hofstatter’s can help more people survive breast cancer.
That mentality made her a perfect candidate to serve as the honorary chair for the Terri Brodeur walk, said Sandy Maniscalco, a co-founder of the foundation and its development and outreach director.
It reminded her of Norma Logan, who led the charge to create the foundation after learning that 40 percent of the money she helped to raise for another breast cancer advocacy group would go to operational costs, not research.
Johanna D’Addario walks near her house in West Hartford on the day she was diagnosed with lobular breast cancer in 2015. D’Addario will be the honorary chair of this year’s fundraising walk for the Terri Brodeur Breast Cancer Foundation. (Photo courtesy of Johanna D’Addario)
Logan, who died of breast cancer in 2006, was pragmatic about her prognosis, and adamant that she contribute to the breast cancer research without falling into the same traps that organizations such as the Komen foundation are often criticized for, spending on “awareness” efforts rather than science.
“She had no problem being outed, and she hated pink,” Maniscalco said.
The Terri Brodeur foundation, named for a friend who died of breast cancer the year before Logan, is in now in its 12th year and distributes 100 percent of the dollars it raises through the walk and other donations to breast cancer researchers. The researchers, usually three recipients per year, receive $100,000 in installments over two years to fund their work investigating prevention and treatment.
Finding someone willing to tell their story as the honorary chair of the walk took a few tries; the foundation didn’t have a walk chair last year, Maniscalco said.
“You can’t just force fit it,” she said. “We look for the right person — it has to mean something. It inspires people to want to step up and walk.”
Like Logan, who was working to grow the foundation even through the months before she died, D’Addario is “very honest,” Maniscalco said. “She’s always positive (but) she doesn’t try to spin it.”