Rare But Real: Lee Giller Raised Hope, Awareness for Male Breast Cancer Patients
Lee Giller never intended to be a hero. He was the kind of guy who would rather look ahead to the future instead of dwelling on the past, and when he was not feeling well, he preferred to keep it to himself.
But when he was diagnosed with breast cancer in 2005 at 48, he learned that sometimes, circumstances make you a hero, despite your desire to fly under the radar. And when he met Dr. Shannon Puhalla and joined a clinical trial, he became more than a voice for men who are fighting a battle that so many people don’t understand. He became part of a lifeline.
A shocking diagnosis
His wife, Kathy, remembers the day of his diagnosis so clearly: Lee had noticed a lump, which he ignored until it became painful. On the advice of a dermatologist, he consulted a surgeon; when he came home, Kathy read the bad news in his face.
“Lee walked in the back door and broke down,” she said. They huddled together, college sweethearts whose three children were approaching young adulthood, whose world had suddenly been turned upside down.
“It was like lightning. Out of nowhere, it just struck,” said Kathy. “And in a heartbeat, your whole life is different.”
Lee Giller learned that he was among the 2,650 men who, according to the American Cancer Association, are diagnosed with invasive breast cancer in the United States each year. Though men are far less likely than women to develop breast cancer, racial disparities within in the disease are significant for men, too: breast cancer is about 100 times less common among white men than white women, and about 70 times less common among Black men than Black women.
Furthermore, Lee was diagnosed with the BRCA1 genetic mutation, inherited from his father. Both BRCA1 and BRCA2 mutations are associated with higher risks for cancer; additionally, the Gillers’ children each carried a 50 percent chance of inheriting the same mutation.
For people of Ashkenazi Jewish descent, like Lee, the risk of carrying a BRCA gene mutation is also heightened to about 1 in 40, or 10 times the risk that the rest of the population carries.
Lee underwent a mastectomy, which surgeons performed when he was still at Stage 2 in his disease. After radiation and chemotherapy, he assumed that he’d just return to his normal life.
“I don’t need to be a hero. I don’t need to be a spokesperson,” Lee told his wife. “It’s just like having the flu: I had it, and let’s move on.”
But Kathy had other ideas. She noticed that when they told people that Lee had breast cancer, they snickered, oblivious to the fact that while it is rare, male breast cancer is real.
“You don’t think you have an opportunity to educate some people here?” she asked him. And that’s when their mission of advocacy began.
They participated in breast cancer walks, often where Lee was the only male survivor. They hoped their involvement would change the messaging; they devised a tagline: “Male breast cancer: rare but real.” Together, their family raised more than $500,000 for their cause. Women would pose for photos with Lee to convince their husbands that the risk existed.
“Women and men get this disease,” Kathy said. “And men. And men. It’s just two little words.”
A woman’s movement, with men
Life slowly returned to normal. For seven years, the Gillers celebrated milestones together: their children graduated from college, their daughter got married and had a baby. Homebodies by nature, Kathy and Lee liked to sit together on their patio, content to enjoy a sunny day. Always athletic, Lee ran and bicycled, eventually turning to walking and weightlifting. He followed a healthy diet. It was part of his personality.
Despite his success in raising awareness and funding, Lee was never completely comfortable with the spotlight.
“Kath, this is a woman’s movement,” he said.
“I understand women started the movement, but this is the 21st century, and it’s high time people realize men are vulnerable, and your life is no less valuable,” Kathy told him.
It was a trip to visit their daughter near Washington, D.C., that the Gillers began to notice things weren’t quite right. Lee had been battling a cough and started antibiotics, thinking it was bronchitis. But on the long drive from their Ohio home to Washington and back, he never stopped coughing, though he insisted he felt fine.
Kathy urged him to see a specialist, who ran a CT scan. Cancer had returned, with a vengeance, now at Stage 4. It was spread throughout Lee’s body, including his lungs, liver and bones.
He hoped to join a clinical trial, where patients can sometimes access groundbreaking therapies years before they’re approved for use in the general public. But because he was male, he was disqualified from joining many of them.
A life-saving legacy
That changed when he made an appointment to see Dr. Puhalla, an oncologist with UPMC Magee-Womens Hospital and UPMC Hillman Cancer Center. She welcomed Lee and his contributions that would help build knowledge about metastatic breast cancer responses to a new treatment.
Dr. Puhalla was honest with him: “Stage 4 breast cancer is not curable,” she said. “What a clinical trial at the very least does is give people more options.”
Lee became part of a trial evaluating the effectiveness of a PARP inhibitor, which is a way to block DNA repair in cells with a BRCA mutation.
Every three weeks, he made the four-hour round trip from his home in Akron, Ohio, to Pittsburgh for the trial, which was specifically designed for BRCA mutation carriers and metastatic breast cancer. It was the only site within a reasonable driving distance that offered the trial. He would receive two standard chemotherapy regimens and, possibly, the trial drug. The study was blinded, meaning the Gillers never knew whether Lee received the drug or a placebo. But his results were remarkable.
After 14 rounds, a final scan revealed almost no trace of the disease. An allergic reaction meant Lee had to end his participation in the clinical trial, though he eventually joined others. The Gillers and Dr. Puhalla formed a bond that lasts to this day.
All told, he lived five years past his Stage 4 diagnosis, more than double the average of a patient who had as much cancer as he did. He got to meet his granddaughter, and his commitment to raising awareness may well have saved lives — including two of his children, who tested positive for the BRCA1 mutation.
Their daughter Pam sought testing shortly after her father’s initial diagnosis; the positive result prompted her to seek earlier screenings. When she was diagnosed with early-stage breast cancer, she underwent a bilateral mastectomy and, later, removal of her ovaries and Fallopian tubes. To date, she has had no recurrence.
Their son, Jay, also tested positive for the mutation. So far, he has not developed cancer, but knowing he is at risk, he is able to stay vigilant. (Lee’s father, who also has the mutation, has never developed cancer.)
Lee Giller died on April 28, 2017. His Father’s Day gift to his children was his life, and theirs.
“Lee always said, ‘I think I saved my daughter’s life, and I would do it again,’” Kathy recalled.
His Father’s Day gift to the rest of the world was his candor about men and breast cancer and his contribution to the clinical trial. Today, PARP inhibitors are an approved treatment for breast cancer patients, and Dr. Puhalla’s clinical trials were an important step in that process.
Speaking of clinical trials in general, Dr. Puhalla said: “They’ve completely changed the way we treat patients with BRCA mutations,” and notes that participating in a trial allowed Lee to get his treatment a decade before it became a standard of care.
“I think there are really a lot of important lessons from Lee’s story,” Dr. Puhalla said, adding that he and Kathy were role models for “how to turn a tragedy into an important legacy.”
For Kathy, another lesson is one of advocacy, and the knowledge that women’s health is human health.
“We, as women, also have a responsibility to the men in our lives: our fathers and husbands and brothers and sons,” she said. “We need to be advocating for them as much as we advocate for ourselves. We can play a very important role in men’s health.”
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