During a trip to France in the 2000s, Carolyn Taylor remembers feeling depressed, unusual for her, especially on vacation. She also noticed she was bleeding between her periods, so she contacted her OB-GYN soon after returning and learned the reason.
“I’m the luckiest person on the planet,” Taylor, 60, of New Salem, New York, told TODAY. “I had stage 1B ovarian cancer, (meaning) both my ovaries had cancer in them, and stage 1 endometrial cancer.”Taylor felt grateful that her cancer was caught at such an early stage — ovarian cancer is particularly difficult to detect and often called “the silent killer” because its symptoms can be mistaken for other conditions, such as PMS. Her dual diagnoses later prompted her to help women around the world facing cancer.
“I wanted to do a photo documentary project on the global face of cancer to show regardless of where you live, the color of your skin, what God you believe in, it doesn’t really matter to cancer,” she said. “In many countries ... there were very little resources for cancer patients or their families in the area of education, awareness and supportive services, so I founded a nonprofit organization called Global Focus on Cancer to try to help.”
Vigilance leads to early detection
As a 25-year-old, Taylor's mom, now 94, was diagnosed with breast cancer. Taylor's maternal grandmother also had breast cancer, which eventually killed her, and Taylor's great-grandmother died from what Taylor only knew as a “female cancer.” Taylor had undergone genetic testing, which didn't uncover any predisposition to breast cancer, but she always remained aware that these conditions ran in her family.
“I had been very diligent about screening, as was my OB-GYN,” she said.
In 2005, when Taylor visited her OB-GYN for an annual exam and mentioned her depression and bleeding, her doctor scheduled a transvaginal ultrasound.
“It was just by luck that my timing was what it was,” Taylor said. “My ovaries were both enlarged. They were swollen.”
Taylor then underwent a Doppler ultrasound, which revealed more evidence of cancer. To cure it, her doctor recommended a radical hysterectomy, i.e., removing both ovaries and fallopian tubes, the uterus, cervix, omentum (fatty tissue in the stomach) and appendix.
“We actually didn’t have to do anything else (to treat it),” she said. “I was super, super lucky.”
At the time, Taylor worked as a commercial food photographer and she “really felt compelled to do something to help other people” with breast and gynecological cancers. But she couldn’t see how her work could contribute.
“I take pictures of English muffins, hamburgers and drinks,” Taylor recalled thinking. "How am I going to translate that to help people with cancer?"
But two years after her diagnosis, she received an email from British Airways offering 10 free business class flights to people who wrote the best essays on how they’d use the flights. That’s when the idea struck her: She would create a photo documentary project on the face of cancer. Her idea won her the flights.
“I traveled to 14 countries to interview cancer patients, survivors, caregivers and medical professionals, really trying to give a face to what cancer looks like in much of the world,” she said.
The experience taught her about the support that women with cancer receive — or don't — around the globe, and it inspired her to start her nonprofit, Global Focus on Cancer, which seeks to expand access to information about cancer.
Supporting cancer patients
Taylor has been fostering relationships with cancer care providers and patients around the world and began working with Mount Sinai Health System's Woman to Woman support group for gynecological cancers. Describing the impact of these efforts, Taylor pointed to what Mount Sinai and Global Focus on Cancer have accomplished in Vietnam over the past five years.
“There was one small cancer support group when we started,” Taylor said. “We partnered with that group in the hospital setting, trying to bridge the knowledge gap between patients and health care providers.”
That group, focused on breast cancer, used to meet monthly but has increased to weekly. More peer support groups have also started, including some for colorectal and gynecological cancers. Since 2017, three sites in Vietnam have trained 250 breast and gynecological cancer survivors to be active peer mentors, Taylor said.
Next up is an evidence-based trial looking at the impact of peer support groups on the health care system, thanks to a recent grant from the National Institutes of Health.
Feeling supported can be transformative to cancer patients, Taylor said. For many people receiving a cancer diagnosis, “the first thing you feel is distress and anxiety, and that’s the very last thing that is ever addressed," she explained.
Rachel Justus, program manager of Woman to Woman, added that peer mentors can teach how to better communicate with doctors, answer those uncomfortable questions about sex and other topics, or simply bond with the patient over the experience of having the same type of cancer.
“Information is power. Information is a very valuable resource,” Justus told TODAY. “It’s really empowering for survivors to be able to use their experience and help others.”
For peer support to be successful, Taylor and Justus must consider each country's individual culture and adapt the training as necessary. They speak with a lot of people to understand how to craft culturally competent support for each country.
“What we actually had to do in Vietnam was to take a few steps back and really teach the women how to listen,” Justus said. “We had to teach them about how you validate those feelings.”
After a two-year travel hiatus, Taylor is returning to Vietnam, though she's gotten updates on how the program has progressed during that period.
“It really helped the health care system. (The ministry of health) said there’s a real value in patients that are more educated,” Taylor said. “It’s working, and it’s exciting.”
When Taylor reflects on her cancer diagnoses, she can’t believe how it transformed her life in so many unexpected ways.
“If someone had said to me 17 years ago, 'You’re going to have cancer, but it’s going to the opportunity of a lifetime for you,' I would have thought they were crazy,” Taylor said. “It has been just that for me.”