‘Don’t Have That Stigma:’ Son raises awareness, research funding for endometrial cancers in memory of his mom
Kelly Jo Carley loved to know what was going on in her three sons’ lives. She was the fun mom, the one who never minded when their friends came over to hang out; she was always trying to tease out of them whether her sons had girlfriends and other details about their social lives. She was always up for a crowd, whether it was a family reunion or a big holiday party. She stayed close to her boys even as they grew to adulthood.
In the office where she worked, her big smile was a familiar sight; everyone knew her, because she was talkative, approachable.
But there was a subject Kelly kept to herself: the inexplicable bleeding she had been experiencing. Perhaps out of embarrassment, as the lone woman in her immediate family, she was silent.
Around Thanksgiving 2018, she felt short of breath, but she still didn’t say anything about her symptoms until December, when she went to see a new primary care doctor. He sent her to the local hospital for some tests; that facility sent her to UPMC Magee-Womens Hospital in Pittsburgh. There, she received a startling diagnosis: Stage IV uterine cancer, with blood clots in her lungs.
“None of us were clued in. And it was too late once everything started happening,” said her son, Shawn Carley. “That’s why I want awareness out there. Don’t be embarrassed. Don’t have that stigma.”
The search for answers
Kelly’s situation is all too common, according to Alison Garrett, an obstetrics and gynecology chief resident at Magee-Womens Research Institute who will be a gynecology oncology fellow next year. Busy with jobs and families and the tasks of daily life, women experience abnormal bleeding but don’t seek care, or perhaps lack insurance, and don’t find out they have cancer until it is advanced.
Garrett said she was interested in the topic because there are many opportunities to improve care and lead to better outcomes. When caught early, uterine cancer is often curable through surgery alone, although a small subset of patients will face a recurrence. To prevent that, doctors will administer radiation therapy after surgery. As doctors cannot predict which patients will recur, many patients will receive radiation, which can reduce local disease relapse, but can also create complications.
Dr. Ronald Buckanovich, Garrett’s mentor, estimates that 65,000 women face a diagnosis of endometrial cancer each year after experiencing postmenopausal bleeding. Of that number, a majority are early stage and surgery alone cures about 90 percent of these cases. But survival rates drop when women delay seeking treatment, and when it recurs, treatments are less effective, he notes. Additionally, endometrial cancer impacts African American women at higher rates, but it does not have much advocacy or funding that would help explain the disparities.
“A lot of women are dying of this disease, and when it comes back, we can’t treat them very well,” Buckanovich said. “It’s a big area of need.”
Garrett is designing a study that would look for potential biomarkers in data and tissue samples from women who have been treated for endometrial cancer in hopes of finding a signature that differentiates patients who would benefit from radiation therapy, versus those who would not benefit from radiation therapy and could be treated with surgery alone. This could help patients avoid radiation therapy and reduce side effects.
“It’s a very significant time in women’s lives when they receive this diagnosis,” says Garrett, who describes gynecologic oncology as her professional calling. “You can be there with the patient, and be there with them through one of the most challenging parts of their lives.”
Raising awareness, raising funds
After her diagnosis, Kelly Carley underwent chemotherapy treatments, with her husband, Bill, driving her more than a 100 miles round trip each time from their house in Homer City, Pennsylvania, to Pittsburgh. Initially, she went back to work, coming home on her lunch hour to crash on the couch.
“She was worried about taking care of us,” Shawn recalled.
Kelly was at Magee for treatment during her family’s Christmas party, but she made it back in time for the actual holiday. Her husband and sons waited on her, cooking and making the holiday as special as she always had.
“The whole time, everyone felt optimistic,” says Shawn, now 31, who lives in the Pittsburgh suburb of Whitehall. “I never thought in a million years that it was terminal. I didn’t realize this would hit so close to us.”
When she resumed her chemotherapy treatments after Christmas, Kelly stayed overnight in Pittsburgh while Bill drove back and forth to see her. On Jan. 15, the family gathered in her hospital room to celebrate Bill’s 60th birthday. They surrounded the hospital bed and smiled for a photo, never realizing it would be their last.
Four days later, Shawn’s phone rang at 2 a.m. It was his brother, David, speaking for their father, who was too overcome to talk. Bill had driven home from the hospital and gone to bed, only to be woken up with a call from the hospital telling him that Kelly had died. Had he known she was so close to death, he never would have left; “that should tell you how optimistic we were,” Shawn said.
Eleven months later, on what would have been his mother’s 56th birthday, Shawn decided to do something in her honor that would give hope to other women facing the same diagnosis: he created a Facebook fundraiser to raise money for research that will aid in the detection, treatment, and prevention of uterine cancer. He also included a link to help raise awareness of the disease and encourage women to seek treatment early.
“Even if this helps raise awareness for one person, don’t hide it,” he said. “Don’t be embarrassed to talk about these things with your friends and family, and especially your doctor.”
The fundraiser garnered $2,650 for the type of research that Garrett and others at Magee-Womens Research Institute are pursuing. According to Buckanovich, such funding is vital, because endometrial cancer is underfunded, yet so curable.
“It was a good thing to do in her honor, I thought,” said Shawn, who was overwhelmed by the support the fundraiser received. “I’m not a pushy guy. I feel grateful for everybody who contributed.”
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