For six years, a California transgender man neglected a lump growing on his right breast.
"It was scary. I just kind of ignored it and ignored it," said the 53-year-old man, who asked to be identified only by the initials, "SK."
SK was in his 40s at the time and didn't have health insurance, or money to get his breasts removed, something he desperately wanted to happen. He also couldn't stand the idea of getting a mammogram, which would force him to acknowledge his breasts.
"Those things didn't belong on me," he said. SK always felt dysphoria about that part of his body and would layer his clothes so his chest would look flat.
He didn't decide to use hormones to medically transition to male until he was 49 years old, though he had known he was transgender since he was a child, he said. A therapist referred him to Planned Parenthood, which provides hormone services for transgender people who want to transition. During a chest examine, a doctor noticed the lump and immediately sent him for a biopsy. The results came back positive for breast cancer. He said his decision to transition saved his life.
"I just wanted to get started on my testosterone and then the lump was found," he said.
The cancer didn't bother him as much as one might expect. "On the contrary, I was kind of excited, because I knew that I could have chest surgery, which is awful. I know that for all the women who have breast cancer it's really disrespectful to feel happy about it, but as a trans man it was the best thing that could happen to a person who was uninsured," he said.
SK managed to get into a California health care program for low-income individuals called Every Woman Counts. It covered the cost of the surgery to remove his breasts, radiation therapy and other treatments. As a female, he would have been able to stay in the program, but after he transitioned and changed his legal identification to male, he was only allowed to remain in the program for 18 months, he said.
"I was trying to see if I could get back into that program as a trans man, because I had the woman parts, but since I switched my identity over to male, everything says 'male,' then it doesn't count anymore," he added.
Gender identity is a common issue for transgender men and women seeking breast cancer treatments and screenings, according to Dr. Madeline Deutsch, Clinical Director for the Center of Excellence for Transgender Health.
"For example, [if] you are legally listed in the system as a 'male' because you either haven't been able to or you can't … update your legal documents, an insurance company can say 'Well you're male, we're not doing a mammogram on you,'" she said.
In 2014, SK enrolled in health insurance available through the Affordable Care Act, commonly known as "Obamacare," which prohibits discrimination based on transgender status. He was able to continue most treatments for his cancer, which had metastasized to his hip bone. The program also covered the cost of his testosterone therapy, which he had been paying for on his own. He said his experience dealing with the health care system has been mostly positive.
"There's always a fear meeting a new physician, because I never know how people are going to react," he said. Doctors and staff at the San Francisco Medical Center, where SK goes for treatment, have been nice to him and are good about using his correct pronouns, he said. But he noted one exception. During an X-ray examine for his hip, a technician—who needed to mark SK's gender on a hospital form—looked point blankly at him and asked: "What are you? A guy or a girl?" When SK responded that he was a transgender man, the technician asked, "Pre-op[eration] or post-[operation]?"
"I said 'pre,' and he goes, 'Female!'… Then he turned around and walked away," SK said, noting that the experience made him feel awful.
It is common for transgender people to experience these kinds of uncomfortable interactions in hospitals and doctors' offices, according to Deutsch.
"Transgender people put off or avoid care quite commonly across the board because of prior disrespect and discrimination," she said.
In a 2011 survey, 28 percent of transgender respondents reported experiencing harassment in medical settings, and 19 percent reported being refused medical care, according to the National Transgender Discrimination Survey.
Not only does the transgender community face discrimination, there is limited research to assess their risks for developing breast cancer, according to Deutsch. She said transgender women who are taking female hormones can develop the disease, but their overall risk remains a mystery.
"There has not been any definitive research done and that is a big problem," she explained. Deutsch said only two breast cancer studies have been done on transgender women, and the studies look only at current rates of breast cancer in those women instead of how it may affect a large population of them receiving mammograms over a long period of time.
"So part of the problem is if transgender people are not being screened, then we have no idea what these numbers mean," Deutsch said.
She said current recommendations for transgender women are to get screened if they are over 50 years old and have a total of five years of estrogen exposure. Transgender men who have not undergone surgery to remove their breasts have the same risk of developing breast cancer as cisgender women and should follow the same recommendations for getting screened, she said. But even when they have had the surgery, there may still be some risk.
"A small percentage of the breast tissue may remain, different surgeons have different approaches, so that's a little bit of a quagmire," Deutsch said.
There are also "significant deficits in the amount of funding made available for researching transgender health issues," she said, and limited pathways for medical researchers interested in researching transgender health, who are likely to be transgender themselves.
"It's just not funded. There's no way to pay for it, so people are not applying for the positions, because they don't exist. So that is another barrier," she explained.
Transgender men who have breast cancer may feel left out of conversations about the disease, since it is widely viewed as something that affects women, with males accounting for only 1 percent of survivors. With millions of people donning pink T-shirts and ribbons for Breast Cancer Awareness Month in October, SK feels a little left out.
"A lot of my friends are women, and I appreciate the pink," he said. "But for myself, it feels a little bit strange to participate in breast cancer awareness …There's no place for me."
SK, who is self-employed, is careful about telling people that he has breast cancer, since that could out him as transgender.
"If I'm meeting somebody and they don't know anything about my trans-ness and they know about the cancer, most likely I'll say I have bone cancer," he said.
Doctors are currently monitoring a new lesion on SK's sternum. He said he continues to take testosterone for now, which increases estradiol, a female hormone that may cause his cancer to spread.
That's a risk SK said he is willing to take "if this is going to be it."
"I will be a man when I die," he said.