Gwen Trost, her husband, and son were swimming in a hotel pool in New Hampshire, where they were on vacation in late August 2012. Benjamin, then 6, accidentally kicked his mother in the stomach.
“It was such excruciating pain that we left vacation early,” says Trost, who lives in Belmont.
Her doctor sent her for a CT scan, and then called her. “You need to come into my office right away,” she was told.
Trost, 49, had always been healthy, so she thought maybe it was a hernia.
“You don’t have a hernia,” the doctor said. “You have kidney cancer.”
‘Without these doctors our genetic disease would have been overlooked, as it is in most people. Now my children and I are safe and will be watched for the rest of our lives.’
In September, a surgeon at Mount Auburn Hospital in Cambridge removed part of her right kidney. In December, because ovarian and uterine cancer run in her family, Trost had a hysterectomy. By February, she felt healthy again, but that would prove short-lived.
Her older son, David, was getting married that May, and she made an appointment with a dermatologist because she didn’t like the “adult acne” she’d lived with since her 30s, even though the subtle white spots on her outer cheeks were barely noticeable even to her family.
When the doctor inspected her face and took her medical history, he called in some colleagues. “We think you have Birt-Hogg-Dubé syndrome,” a rare genetic kidney disease, she was told. A biopsy was taken, and she was given a packet of information.
“I couldn’t get a word out,” says Trost. “I was hysterical. At this point, I wanted to be done with doctors.”
But the diagnosis turned out to be lucky both for her and her family. The syndrome often goes undetected until kidney tumors have formed and metastasized. A warning symptom is the sprinkling of benign lesions on the face and neck called fibrofolliculomas, which is what the dermatologists saw on Trost. Those with Birt-Hogg-Dubé have an increased risk of tumors in the kidneys — benign or cancerous — and cysts in the lungs, which can cause them to collapse.
Soon, Trost was at Massachusetts General Hospital seeing Dr. Othon Iliopoulos, an oncologist whose clinic and lab specialize in genetic forms of kidney cancer. He told her that they would tackle her cancer together.
Trost believes that he and his team, along with the dermatologists at Mount Auburn, helped save her life, and perhaps those of her two sons, who have a 50 percent chance of being saddled with the late-onset disease, whose symptoms typically appear when people are in their 20s or 30s.
“Without these doctors our genetic disease would have been overlooked as it is in most people,” she says. “Now my children and I are safe and will be watched for the rest of our lives.”
Trost’s older son is 23; both he and Benjamin will start being monitored at age 25. Their mother still worries about them. Her brother and sister have lesions on their kidneys but have chosen not to have scans to see whether they’re cancerous, she says.
Since it is her life — and his life’s work — Trost, co-owner of Sandrine’s Bistro in Harvard Square, is hosting a Gift of Life Fundraiser at the restaurant Saturday night to benefit Iliopoulos’s research. Four top chefs — Daniel Bruce from the Boston Harbor Hotel, Raymond Ost from Sandrine’s, Mary Dumont from Harvest, and Gordon Hamersley of the eponymous bistro — are donating their time, and the party will include a cocktail hour, three-course dinner, silent auction, dessert, and after-dinner drinks.
Trost decided to throw the fund-raiser when Iliopoulos told her he was spending much of his time writing research grants and not getting very far. “The NIH [National Institutes of Health] fund-raising is quite restrictive,” says Iliopoulos, an associate professor of medicine at Harvard. “The scientific community feels very strongly that the pace of research has slowed because of it.”
Breast, lung, prostate, and colon are the most common types of cancer, he says, but next is kidney cancer, with 60,000 new cases a year in the United States. The genetic forms, such as Birt-Hogg-Dubé, are much rarer, but Iliopoulos notes that any strides made with them also benefit what he calls “garden-variety kidney cancer.”
Looking back, Trost believes that the syndrome was passed down through her father’s side of the family. Though he died of a heart attack at age 62, Trost learned that his grandmother and her siblings had kidney disease.
On a recent day, doctor and patient were sitting in Sandrine’s, Trost chic in a black and white dress. Benjamin was hanging around the bistro and came over for a hug or two from his mom.
Birt-Hogg-Dubé is one of four genetic kidney cancers that Iliopoulos studies. He saw his first kidney patient in his last month as a medical oncology fellow at the Dana-Farber Cancer Institute in 1993. David was a 36-year-old man in a wheelchair, waiting in the outpatient clinic. He’d already lost one kidney to cancer, had tumors in his brain and spine, and lesions in his eyes. His father, uncle, and grandfather had died from kidney cancer. His young children had the same lesions in their eyes, and Iliopoulos knew they could be headed for the same fate as their forebears.
He decided then to focus his career on the genetics of kidney cancer. “It was an intense experience,” he says. “David’s kids are my patients now.”
Iliopoulos’s lab at Mass. General has studied the mutations that cause cells to proliferate and discovered some smart drugs that are promising in treating kidney cancer. “The best way to take care of patients is to catch the tumor at an early stage,” he says, his words tinged with traces of his native Greece.
Twice a year, he takes an MRI of Trost’s kidneys and lungs. “We stay on top of it,” he says.
Trost smiles, recalling his remarks to her about the possibility of collapsed lungs because of cysts. “He said, ‘Don’t worry. It won’t kill you. Just get to the emergency room and you’ll be OK.’ It added comic relief to the whole thing.”
What Iliopoulos does not have, and clearly wants, is a drug to prevent genetic kidney cancer. “We can offer early detection through MRIs but it would be helpful to be able to stop it,” he says. “The ultimate dream of research would be to have a pill or compound to give you. If you take one of these every week, day, or month, it will protect you from developing cancerous tumors. This is why we need further research.”
Trost says her goal with Saturday’s fund-raiser is $50,000, but her goal for the year is to raise $150,000. She and some friends in the food and wine business have formed a “very grass-roots” committee to do so.
“We can do a lot with that,” says Iliopoulos. “The more we understand, the more we can develop drugs to prevent cancer from developing, or to treat it if it does.”
Raymond Ost, a co-owner of Sandrine’s, admires Trost’s positive attitude. After she was diagnosed, he connected her to his friends and relatives who are longtime survivors of kidney cancer. “She’s back, she’s good, she’s a strong woman with a very good heart,” he says. “I think the thought is there that she still has the disease but also that she’s got all her life to live.”