By Steve Blanchard - October 25, 2022
At 67, Robin Wilson is much less concerned about how people react to him, particularly in doctors’ offices.
Had he been diagnosed with breast cancer in his 30s or 40s, he said, he would have been much less likely to get the medical attention he needed earlier this year.
“But at my age I don’t care anymore,” Wilson said. “How others feel, well that’s their problem. It’s not common, but men do get breast cancer. That’s how I’ve felt about all this.”
Those who identify as transgender often find navigating health care as challenging, Wilson said.
While guidelines for breast cancer screening are regularly shared by many health institutions, guidelines specifically focusing on the transgender population are less prominent. Dr. Bethany Niell, section chief of Breast Imaging at Moffitt Cancer Center, hopes to change that.
The first thing to recognize, she said, are risk factors.
"It’s also important to consider whether a patient has received any surgeries that may alter the risk, such as having breast tissue removed or augmented."- Dr. Bethany Niell, Diagnostic Imaging and Interventional Radiology
“This includes gender assigned at birth and hormone use,” Niell said. “It’s also important to consider whether a patient has received any surgeries that may alter the risk, such as having breast tissue removed or augmented.”
Finding a Lump
Wilson first discovered a lump under his left arm over the summer. Because of the history of breast cancer in his family, and because his partner urged him to get treatment, he found himself at Moffitt.
It was a setting in which he was already familiar because earlier this year, he was diagnosed with an aggressive form of lymphoma
“The lymphoma was much more aggressive than the breast cancer, so that’s where we focused first,” Wilson said. “I had six cycles of chemotherapy to deal with that, which went very well.”
While his lymphoma was treated, Wilson scheduled a mammogram and eventually decided the best course of action was a double mastectomy.
“The mammogram showed I had cancer,” Wilson said.
In June 2022, a month after his last treatment for lymphoma, Wilson had the double mastectomy. He believes the treatment for lymphoma kept his breast cancer from becoming a much larger problem.
"This happens to everybody; no one is picked for cancer, and it happens. I’ll do what the doctors tell me to do and see what happens."- Robin Wilson, lymphoma and breast cancer survivor
“It was kind of unbelievable and I expected to be written up in some kind of medical journal for having three cancers at once,” Wilson laughed. “My life partner was beside herself with anxiety and I was just like, whatever. This happens to everybody; no one is picked for cancer, and it happens. I’ll do what the doctors tell me to do and see what happens.”
Tailoring Screening Guidelines
Breast cancer is treatable when caught early, according to Niell, regardless of that person’s gender identity. And with cases like Wilson’s, guidelines about screening in the transgender community will continue to evolve.
But there are guidelines available already as part of the American College of Radiology, and Niell had a direct hand in creating those. Niell currently chairs one of the two American College of Radiology Appropriateness Criteria Breast Imaging panels, which create evidence-based guidelines for imaging examinations.
“We engage medical professionals from other organizations to participate in creation of these guidelines, too,” Niell said. “The ACR appropriateness criteria can be used for clinical decision support to determine when advanced imaging is appropriate in our patients, including transgender individuals.”
Screening regimens vary depending on each patient’s set of risk factors, but physicians now have a tool to help understand when a mammogram, digital breast tomosynthesis (“3D” mammography) breast ultrasound, breast MRI or other advanced imaging are recommended in a transgender patient.
“We continue to have very little data about how to best manage our LGBTQ patients in part because health care in general has not done a great job of building bridges between health care providers and these patients,” Niell said. “At Moffitt, we welcome all patients. We want to help you.”
But even if LGBTQ patients don’t come to Moffitt, Niell wants to make sure that the proper guidelines are made available to whichever institution treats members of that population.
“There is an underutilization of the health care system and cancer screening in these patient groups,” Niell said. “Focused outreach and future research will help us better understand how to take care of these patients as a health care community.”
Trust in Health Care
Wilson feels fortunate to have found Moffitt.
“The doctors at Moffitt have just been so understanding,” he said. “I’ve never felt uncomfortable at any doctor visit or at any office at Moffitt. Even with them knowing I’m transgender, no one has made me feel less of a person because of that.”
Currently, Wilson’s lymphoma is in remission, and he is on hormone therapy to manage his breast cancer. He is seeing doctors regularly and will soon see a Moffitt radiation oncologist to determine if radiation is necessary.
But for how, he feels healthy.
“I have some neuropathy in my hands and feet from the chemotherapy, but overall, I’m doing really well,” he said. “Always listen to your doctors and trust their advice. Don’t go reading up on your cancer because you will find all kinds of information that will do you more harm than good. Everyone’s experience is different.”