NORFOLK, Va. - Cancer touches so many lives. It’s likely you know and love someone who’s been diagnosed.
According to the American Cancer Society, it’s estimated more than 1.9 million people will be diagnosed with cancer in 2022.
News 3’s team of investigators is digging into why diagnosing and treating reproductive cancers in nonbinary and transgender people can be challenging.
“I didn't expect that I would be living a life with metastatic ovarian cancer, navigating gender identity challenges, and also educating people about it,” Dana Kivel, a California resident and nonbinary cancer survivor, told News 3.
Kivel has been on two journeys in their life - one that’s involved fighting cancer since 2011.
“It was a rare form of ovarian cancer called granulosis cell tumor,” they said.
The other has been finding their identity.
“As I got older, I just started to feel like, 'Well, maybe I actually feel a little less aligned with this sex, this body that I was born with,'” Kivel told News 3.
At times, their journeys crossed paths.
“In 2015, I was slated to get a bilateral double mastectomy, and that was also around the time that my cancer came back,” they said. “I had to put that on hold, and that was really hard. I had been so looking forward to this surgery for so many years.”
After eventually getting the surgery, they were then told by a doctor they had to hold off on taking testosterone because their cancer was hormone-based.
“To them, it was just like, ‘Yeah, here's the science. Here's the facts.’ I think they didn't really quite get that what they were saying was, 'You can't do what you want to do that will help you become the person you want to become.' That was pretty devastating.”
Meanwhile, the National LGBT Cancer Network is shedding light on issues for transgender and nonbinary patients.
“Every time we have to go to a new doctor, there's a lot of dread and avoidance as far as how we're going to be treated,” Scout, Executive Director for the National LGBT Cancer Network, said.
The American Cancer Society said many LGBTQ patients experience discrimination based on sexuality or gender identities, even in medical settings.
The organization recently cited data from the Fenway Institute that 25 percent of transgender people report being harassed in a doctor's office. Nineteen percent report being denied medical care.
“We can get these really harsh experiences,” Scout said. “But, because of that, we know that we don't see doctors as frequently as we should. We're less likely to have a medical home, and we're also more resistant to going to new doctors that we somehow have to ‘feel out’ if they're welcoming.”
News 3 asked Scout how prevalent they believe reproductive cancers are within the transgender and nonbinary communities.
“It’s a great question. One I would love to answer for you with, but we do not have any answers related to that,” Scout answered. “That's primarily because a lot of people don't realize that a lot of the data that we collect around cancer is based upon that intake form at your doctor's office. You usually don't ask if someone is LGBTQI on that intake form.”
Dr. John Plemmons is the medical director of the Sentara McLeskey Comprehensive Breast Center at the Brock Cancer Center in Norfolk.
“Certainly, the number of patients that we see that we know of that identify as either trans woman or trans man isn't that great,” Dr. Plemmons said. “It suggests that we still have some work to do in reaching out to that community, educating them about the need for screening and making them feel comfortable about walking through that door.”
In 2019, the breast center created guidelines for their doctors to better address trans patients.
“They [primary care providers] were seeing these patients in their office, and they didn't know what to tell them because they were getting good reasonable questions, and there just wasn't a lot of information out there,” Plemmons said.
According to Dr. Plemmons, the current guidelines for trans women over the age of 50 and have been receiving hormone replacement for more than 5 years, are mammograms. The same also applies for trans women who have other risk factors.
As for trans men, if they still have breast tissue, Dr. Plemmons said it’s recommended they get screenings and mammograms. However, if they’ve had a total mastectomy, the guidelines are annual clinic exams.
“We did come up with a product that I think we're pretty proud of, but it's one I think will be revised as we get more and more information,” Plemmons said.
Dr. Plemmons said this includes possibly amending and expanding this policy for other cancers.
Meanwhile, Kivel believes more attention needs to be paid to making everyone feel comfortable in the doctor’s office.
“There are trans women who get testicular cancer,” Kivel said. “We need to talk about this. But, if caretakers can't conceptualize beyond a narrow binary of how gender exists, ‘Well, only women get ovarian cancer and men get testicular cancer," then a lot of people are going to feel left out. A lot of people are not going to be seen or treated, and a lot of people will die unnecessarily.”
Recently, the Cleveland Clinic released guidance for transgender reproductive cancer patients.
No matter how you identify, the best advice is to find a doctor you can connect with and ask questions about their experience for caring for patients like you.