Time can weigh heavily on the mind during life’s most stressful situations. Vanie Tuthill felt a sense of helplessness as her daughter, Bernadette Tuthill, was diagnosed with breast cancer and began to undergo treatment in 2016.
To help clear her mind and burn off some anxiety, she would play pickleball.
As any parent would, she wished the roles had been reversed.
“I was saying to myself, ‘I wish I would go through this so my daughter didn’t have to,’ ” she said.
For Bernadette, who lives in Calverton and was 42 at the time of her diagnosis, keeping as busy as possible at work in between radiation treatments allowed her the opportunity to clear her mind and avoid some of that idle time when worry and negative thoughts can seep in. (She’s a partner at the Riverhead law firm Twomey Latham.) For as challenging and stressful her experience was to undergo treatment, it wouldn’t be until a few years later until she understood just how her mother felt standing by her side.
Vanie, who now splits time between Calverton and Florida, had undergone yearly mammograms since her late 40s and never encountered any issue. She had no known family history to indicate a higher risk for breast cancer. Last June, however, about eight months after her last mammogram, she noticed an irregularity during a self-exam.
At age 71, she was diagnosed with stage 2A breast cancer, a slightly more advanced stage than her daughter who had been diagnosed at stage 1C. Vanie’s cancer had spread to the lymph nodes.
“Watching her go through it was actually much harder because I couldn’t do anything else,” Bernadette said. “At least when I was going through it, I was going to the radiation treatment, I had the surgery, I was doing these things to fix it. But it’s much harder to watch when you’re not doing.”
Breast cancer remains the second most common cancer among women in the United States, according to the Centers for Disease Control and Prevention. An estimated 43,600 lives were lost in 2021 alone. For a mother and daughter to both be diagnosed with breast cancer in their lifetimes is not entirely uncommon, but what makes their case unique is that they did not have any gene mutations that would increase the likelihood of breast cancer.
Bernadette said she underwent a full genetic panel, which tests for about 48 genes linked to breast cancer, the most common of which are known as BRCA1 and BRCA2. No links were found.
“In my conversation with friends and acquaintances,” Vanie said, “I tell them my story and that my daughter also had it, I haven’t found a mother-daughter case like ours where there’s not a genetic connection.”
While their stories and paths to overcoming breast cancer are each unique, a common thread developed in the support they received through the North Fork Breast Health Coalition, a nonprofit organization dedicated to raising funds for services that assist North Fork residents who have been diagnosed with breast cancer.
Vanie had known about the coalition since he was friends with its founders, Ann Cotten-DeGrasse and Antonio DeGrasse. She would contribute a donation or attend a function from time to time, but didn’t realize just how deep an impact the organization had. When Bernadette was first diagnosed, a friend who was involved in the coalition quickly connected her and helped her apply for a grant.
“I didn’t really know a lot about it,” Bernadette said.
On April 8, the coalition will host its annual Pink Pearl Gala, a celebration of “breast-cancer survivors, providers and caregivers.” The fundraising event was last held in 2019 due to the pandemic canceling it the past two years. Last year, a socially distanced Pink Pearl Raffle was held at the organization’s Riverhead office.
Many of the volunteers in the organization are women who experienced breast cancer themselves. Bernadette and her mother are no exception, and both have taken on expanded roles in the coalition. Bernadette is now vice president, working alongside current president Melanie McEvoy Zuhoski, while her mother is one of nine at-large directors.
Pink Pearl Gala
The gala will be held Friday, April 8, from 6 to 10 p.m. at East Wind Long Island in Wading River. Tickets cost $125 per person or $95 for breast cancer survivors. The raffle this year benefits the new Keri Lynn Stromski Stage IV Breast Cancer Research and Support Fund. Information on the gala is available at northforkbreasthealth.org or by email at [email protected].
“The coalition has been a super resource,” Vanie said. “It provided support and provided comfort. Even though doctors give you information, you never get the whole story.”
Bernadette said fundraising was a challenge during the past two years during Covid-19.
“We’re relying entirely on the generosity of different individuals and organizations during Covid, so we’re particularly excited to get back to our gala and be able to honor and remember and celebrate all of these people,” she said.
The gala will be held at East Wind Long Island in Wading River from 6 to 10 p.m. More information can be found at northforkbreathealth.org.
Bernadette recalled how her mother was by her side when she first went for surgical consultations and biopsies. She underwent surgery about a month and a half after the diagnoses to have a tumor removed. The cancer had not spread to her lymph nodes, and doctors determined that radiation was her next course of treatment. She did develop lymphedema, which is a “build-up of fluid in soft body tissues when the lymph system is damaged or blocked,” according to the National Cancer Institute. She underwent physical therapy and saw a lymphedema therapist to help treat that.
Her mother underwent surgery a little over two months after diagnosis last year.
In most cases where a mother-daughter both are diagnosed with breast cancer, it’s typically the mother who is diagnosed first. The median age at diagnosis is 63 and it’s most frequently diagnosed among women aged 65-74, according to the National Cancer Institute.
Having already gone through breast cancer, Bernadette got right to work when her mother received the fateful news. She connected immediately with her care team through Stony Brook Medicine as she remained an active patient within the five-year window. Knowing what the process was like helped alleviate some of the stress that inevitably comes, particularly during the waiting periods.
Vanie said her daughter came with her to appointments, which was invaluable since Bernadette knew what type of questions to ask and could better retain information.
“When you’re the patient, the nerves and the anxiety, you can’t take all the information in and think quick enough to ask the right question,” Vanie said.
Both women stressed the importance of annual mammograms for women, particularly now as cases are being seen in younger women. And in Vanie’s case, it went beyond a yearly checkup. If she had not discovered the irregularity herself, and waited an additional four months for the next scheduled mammogram, the outcome could have been entirely different.
“I could have been stage 4 if I waited another four months,” she said.
The pandemic added another level of fear for both women. Bernadette remains immunocompromised from the radiation and at greater risk for developing serious symptoms from Covid-19. And Vanie was diagnosed as cases began to climb last summer amid the delta variant surge. A Covid-19 diagnosis would have delayed surgery or treatments.
“All of this weighs on your mind,” Bernadette said. “Because the longer this is in your body, your mind sort of just wanders sometimes about what’s going on. You want to just get it out and treated.”
Vanie said even her husband was hesitant to go out anywhere for fear he could bring the virus home.
“It’s a very isolating experience,” she said.
Friends and family did their best to support both women during each of their experiences.
“For a lot of people, your pain is their pain,” Bernadette said.
While the outcomes so far have been positive for both mother and daughter, they know a breast cancer survivor is never truly in the clear. A chance of recurrence always remains, a risk that “doesn’t really ever leave the back of your mind,” Bernadette said.
“Despite the diagnosis, my mom and I were extremely fortunate,” she added. “Any number of things could have been different and we could have had a radically different outcome.”