Carolyn Taylor remembers the moment she found out she had cancer. She was traveling Europe in the early 2000s when she noticed she was bleeding in between her periods, so she contacted her OB-GYN and set up a consultation.
Now 60, she is eternally grateful she caught both of her cancers early.
“I’m the luckiest person on the planet,” she said. “I had stage 1B ovarian cancer, (meaning) both my ovaries had cancer in them, and stage 1 endometrial cancer.”
Known as the “silent killer,” ovarian cancer is particularly hard to detect because symptoms can be mistaken for PMS.
Her doctor suggested a transvaginal ultrasound, which quickly identified the problem.
“It was just by luck that my timing was what it was,” Taylor said. “My ovaries were both enlarged. They were swollen.”
She then underwent a Doppler ultrasound, which confirmed her cancer diagnosis.
They ended up having to remove both of her ovaries and fallopian tubes, the uterus, cervix, omentum, and appendix to get rid of the cancer.
“We actually didn’t have to do anything else (to treat it),” she said. “I was super, super lucky.”
Her family has a long history of battling cancer as well. Taylor’s mom, now 94, was diagnosed with breast cancer. Her grandmother also had the disease, which eventually killed her. Before that, Taylor’s great grandmother died of what the doctors called a “female cancer.”
Considering cancer runs in her family, Taylor underwent genetic testing, but the results didn’t uncover any additional risk factors.
“I had been very diligent about screening, as was my OB-GYN,” she said.
Her life changed dramatically after the procedure, and she immediately started thinking about how she could put her photography skills to good use.
“I take pictures of English muffins, hamburgers and drinks,” Taylor recalled thinking. “How am I going to translate that to help people with cancer?”
She decided to focus on women that were facing a similar diagnosis.
“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 few 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.”
She happened to come across an essay contest with British Airways that was offering 10 free flights to the person with the best essay on how they plan to use the flights. She wrote that she planned to travel the world documenting cancer patients and survivors to give a face to the disease. Her essay won her the flights and she ended up traveling to 14 different countries.
The experience inspired her to start a non-profit, Global Focus on Cancer, which aims to spread awareness about cancer.
She began fostering relationships between healthcare providers and patients around the world. The group partnered with Mount Sinai Health System’s Woman to Woman support group for gynecological cancers to increase access to cancer treatment and testing in Vietnam.
“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.”
The group meets weekly to discuss the effects and signs of breast cancer. Other support groups have been created since then, including those that focus on 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.
The nonprofit recently received a grant from the National Institutes of Health to conduct an evidence-based trial looking at the impact of peer support groups on the healthcare system.
Taylor said having support as a cancer patient can be transformative.
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, believes peer mentors can help doctors and providers better communicate with their patients, especially when answering difficult or uncomfortable questions such as those related to going to the bathroom or having sex. It’s also an opportunity for the provider to bond with the patient.
“Information is power. Information is a very valuable resource,” Justus commented. “It’s really empowering for survivors to be able to use their experience and help others.”
The program also caters its approach based on the location. Justus and Taylor spoke to hundreds of local residents to create a culturally competent support group for each community.
“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.”
Taylor goes back to Vietnam regularly to check up on the program and she’s thrilled with the results.
“If someone had said to me 17 years ago, ‘You’re going to have cancer, but it’s going to be the opportunity of a lifetime for you,’ I would have thought they were crazy,” Taylor said. “It has been just that for me.”