Eli Reynolds has a strand of beads about a meter long. It’s a colorful menagerie of glass and plastic and porcelain. Some are etched and oblong; some are covered in little red flowers or purple stripes. Every bead that Reynolds strings represents a moment in time: a doctor’s appointment, an MRI, a diagnosis, a biopsy. And in between each bead is a delicate freshwater pearl, one of which is added every time Reynolds is misgendered by the medical community since being diagnosed with cancer.
Reynolds, who identifies as nonbinary (and uses the pronouns “they” and “them”), was diagnosed with stage 2B breast cancer in early August of 2016. Reynolds had started taking testosterone earlier that year, and after years of tamping down their chest with a binder, had scheduled a consultation for top surgery (to remove breast tissue to masculinize the chest). After the appointment, they went home and took a long look at their chest in the mirror, the way you would tuck your hair up before deciding on a drastic cut. They pushed in their breasts to see what the result would look like. That’s when they discovered a lump in their armpit. “It’s really ironic,” Reynolds says. “I was so ready to have a flat chest, and then along came this thing.... It felt as though a lot of choices were taken away from me.”
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Suddenly, the surgery had to wait. “My experience of breast cancer robbed me of every meaningful aspect of my transition,” Reynolds says. “Now I had to have months of chemotherapy.”
When a cisgender woman is diagnosed with breast cancer, the options for course of action are scary, but fairly clear. Lumpectomy or mastectomy, chemo and/or radiation, reconstruction. But for Reynolds, the question was: Why reconstruct what already feels out of place? So they had a choice. They could have the lymph nodes removed and then go to a doctor for top surgery, or get it done all at once, which would mean that their chest wouldn’t look quite like what they had imagined for themselves in those wishful-thinking mirror sessions — it would be more scarred, more sunken. “But I told them when they went in there to just take everything out. I couldn’t wait anymore. And at least now it’s better than it was,” Reynolds says.
Being robbed of a proper top surgery wasn’t the worst part for Reynolds. Nor was the aggressive treatment. Or the physical symptoms of chemotherapy. “The gender stuff was, in many ways, as hard as if not harder than the cancer stuff. It was so painful. I had to endure this time where everyone who talked to me assumed I was a woman ,” says Reynolds. Their birth name, which is not Eli, appeared on all their records. Reynolds found what many transgender and gender-nonconforming breast cancer patients find: that the medical community still just doesn’t get it.
“The biggest challenge is the attitude toward transgender persons in the medical community. There is a lot of discrimination, and unfortunately that means some trans patients don’t seek care as often — they’re driven away,” says Timothy Cavanaugh, a physician and co-medical director for the transgender health program at Fenway Health in Boston. “And for trans men who have body dysphoria, specifically involving their breasts, mammograms and breast exams can be a humiliating and intensely traumatic experience.”
Darryl Mitteldorf, the founder of the National LGBT Cancer Project, says gender affirmation plays a big role in some people refusing to be screened. “They think, I’m a man now. I don’t want to go for breast cancer screening. But the reality is that physically you were born with estrogen, and it’s still playing a part in your life,” he says. “They’ve done this extraordinary thing, and they’re living who they are. But there are still tracings of the body they were born with. Part of being healthy and staying alive is acknowledging that.”
But let’s say a transgender or nonbinary person does get the regular screenings that are suggested if you’ve been on hormone therapy for five years or more. That’s only the beginning. There’s also a staggering lack of research surrounding their unique circumstances. Look at the state of health care today (“It’s amazing watching them play football with my health care right now,” Reynolds says as an aside). It seems safe — if incredibly depressing — to presume that this presidential administration will not be pouring money into transgender breast cancer research. So answers are limited.
Reynolds was taken off testosterone treatments in case the surge in hormones was contributing to the cancer, though no one could say for sure. “I talked to two doctors,” Reynolds says. “There was no way to prove if the testosterone had anything to do with my tumor. And the testosterone was really important to me. It felt the way antidepressants are supposed to feel. It was helping me be in my body.” As of today, Reynolds has an appointment scheduled with their doctor for the day after their chemotherapy has been completed in order to resume the testosterone.
And then there’s the lack of training. Of understanding. Reynolds found that their oncologist was not totally aware of what it meant to be nonbinary. When Reynolds expressed concern that they might lose their sex drive without the hormone therapy, the doctor’s solution seemed flippant: “She said she was sure there were adaptations I could make within my community. I still don’t know what that means. I think she thinks we have, like, magic sex unicorns that fix everything.”
The trans and nonbinary patients we spoke with had tales of feeling judged or neglected. Not getting coverage from insurance companies that deemed chest reconstruction for a man unnecessary. Doctors who were more fascinated with their sex and hormones than with the breast cancer. Another who was refused a bathroom key from the front desk. When Reynolds first attended a chemo seminar at the hospital, pamphlets were passed around: Sexuality for the Woman With Breast Cancer. Sexuality for the Man With Breast Cancer. “They passed one out to everyone but me,” Reynolds says.
“You need to reach for a friend or an advocate to go with you to appointments and stand up for you. Who isn’t afraid to correct a misgendering. Don’t be afraid to need help. Don’t be afraid to be assertive,” says Reynolds. They found solace in friends, and in one nurse manager in particular, who would manually change the gender indicator on their hospital bracelet from “F” for female to “U” for unknown — the only option outside of male and female. “It probably only sticks in the system for about 24 hours, but she understands that I am a trans patient, and that is her way of honoring that. Of making sure I get the care that I need. Those things mean so much to me.”
Reynolds will be finishing chemotherapy in early November. “God, it feels like a very long time,” Reynolds says after saying the date out loud. “I’m in the body I’m in now, and I’m just trying to be gentle with myself, and it’s really — this is really hard. Queer cancer is here, and I know how unbearable it is. My advice is: Just don’t kill yourself.”
And for now there’s still that string of beads that Reynolds is adding to: “It’s very heavy. I like being able to hand it to someone and have them feel the weight of it. There’s a nice symbolic feeling around that. Like, ‘Here. You take this for a minute.’ ”
More on breast cancer:
This Cancer Survivor Dispels The Stigma That Breasts Equal Femininity
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