“If You’ve Got the Part, Get It Checked”
“If You’ve Got the Part, Get It Checked”
The filmmakers behind “Trans Dudes with Lady Cancer” discuss equity in cancer treatment, advice for their community, and why nervous doctors need to “get over it.”
Cancer loves a plot twist. In my case, I was diagnosed less than a month after we learned my wife was pregnant. For best friends and filmmakers Brooks Nelson and Yee Won Chong, they each found out they had cancer within weeks of one another. But that’s not even the twist.
“A cancer diagnosis is frightening and stressful for anyone,” says Nelson in the duo’s documentary Trans Dudes with Lady Cancer. “Being transmasculine and being diagnosed with a cancer that I thought of as a lady cancer added another layer of complexity and anxiety.”
In 2016, Nelson and Chong were living under the same roof as chosen family members, along with Nelson’s partner Jeannie, her daughter Avalon, and their Boston terrier, Fred. That year, Nelson was diagnosed with ovarian cancer. Not long after, Chong was diagnosed with breast cancer. Says Nelson in the film, “When you’re someone who looks like me, is married to a beautiful woman, loves working with my hands—and I have ovarian cancer? Like, that sucked. And that sucked on a bunch of different levels.”
The different levels on which it sucked are the subject of the duo’s 30-minute documentary. There’s the usual stuff—surgery to remove a football-sized tumor in Nelson’s abdomen, and a year’s worth of surgery, chemo, and radiation to treat Chong. That’s all harrowing enough, but on top of that the film explores the unique challenges faced by trans people when seeking medical care of any type, let alone for “lady cancer.” For example, insurance companies can throw a fit if a patient’s gender doesn’t match the one expected on a diagnosis code, and when it comes to breast cancer, Chong says, “Everything is pink—pink this, pink that. It’s pretty awkward.”
Nelson and Chong have spent the last few years touring the country with their movie, helping to facilitate a dialogue between the trans community and medical professionals. (In fact, just as I was prepping this post, they were recognized, along with POTUS himself, as this year’s “Champions of Cancer” by the website CancerHealth.com—congrats!) They recently took time out of their schedules to help me—a white, cisgender, English-speaking male, i.e. the exact type of person the US medical system was designed and optimized for—better understand some of the issues facing their community. Our conversation has been edited for length and clarity.
How soon after your diagnosis did you think, Let's make a film about this? And was that a difficult decision given everything else you had going on?
Nelson: It was after Yee Won had started chemo and after my surgery. As a family member accompanying Yee Won to appointments, we would talk about how much it sucked. And then as filmmakers who believe in the power of media, we were like, “Okay, do we have a responsibility to see if we can make this any better?” Knowing how much time and energy it would take, we came up with four foundational principles that we came back to every time we faced the question of, “How will we know if this is worth it?”
Chong: Goal one is to raise awareness among transgender people, because we often get the wrong information from our doctors and health care practitioners. So we have to educate ourselves. Related to that is to really encourage people to check whatever part you have. If you have it, get it checked, no matter how uncomfortable. As you see in the film, the exam that I got from my doctor was just a few seconds, and it saved my life.
Nelson: The second goal is to interact with practitioners, people who work one-on-one with patients, who would talk to trans folks individually, and to try and make the experience less scary, more accessible. The third goal is to inspire these practitioners to advocate for trans-inclusive care within the institutions where they work, because working in a system from the inside out can be super effective.
Chong: And then the fourth goal is we wanted to use this as an opportunity to expand the conversation. So even though the film is about the two of us and specifically cancer, a lot of what we cover is much more than just cancer. It’s about how trans people walk into any kind of health care setting and how that can be improved.
After watching your film, I looked at my patient portal for the cancer center where I’m receiving care, and noticed I’m given the following fields to edit: “Preferred First Name,” “Legal Sex,” “Gender Identity,” “Sex Assigned at Birth,” and “Sexual Orientation.” Is that progress, and how common is it in your experience for patients to have the opportunity to provide this level of specificity and clarity?
Chong: Two things we want to say about this. One is, that's great. And you're in LA, right? And we’re in Portland, Oregon. And so it's nice to see that some of these more progressive areas are asking these questions. But that's not the case in most places. We also think that it would be good for health care institutions to have an inventory of anatomical parts. I'll give you an example. I had a double mastectomy, and also hysterectomy. And earlier this year, I got an email from my insurance company that it was time to get my pap smear. Whether I'm a trans person or a cisgender woman, getting that email was just unnecessary.
Nelson: The other thing that we've heard as we've talked to medical practitioners is that a lot of the time that information exists, but people don't have the time to actually read it. We've heard from nurses, doctors, front office staff, that the pressure on our broken medical system is impacting everyone. They're reading the one or two fields that they have time to read before they have to get you to the next step. And so it doesn't matter how good the tools are if the people using them don't have the time.
Trust is such an important aspect of medical care, especially with something like cancer, which can involve so many decisions with long-term consequences. As a trans person, what's your approach to building trust with your care team?
Nelson: My oncologist being able to meet my partner Jeannie and me on that first day and treating us just like a family with a cancer diagnosis was the first critical step. But I think trust came in when she did what I call “the warm handoff,” where she’d take a minute out of her incredibly busy day and call somebody in the clinic across town and say, “I'm sending this patient to you, here's their story, here's my expectation of what I need.” Then when I got there, we didn't have to go through everything again.
Chong: For us, going into a health care setting, you almost go in expecting a deficit: They're gonna get this wrong or they're gonna get that wrong. For both of us it was Dr. Scopes [who is featured in the film] who discovered our cancer, and she's a naturopathic doctor. And so she vetted the medical oncologists first, so I could walk into the room of that first appointment knowing that I'm not walking into a deficit.
Nelson: It's not positive, but it's neutral. And there's an opportunity in that neutral space to see if you can build that trust.
Chong: It’s also so important to do the research. I’ve used Dr. Scopes as my primary care physician since I moved to Portland about 16 years ago. I knew I needed to do the research and find someone who's knowledgeable about trans issues, and I found her. But that's not always the case for a lot of people, because even that information is hard to get to. I have a friend who works in a hospital system and her job is to call doctors to check whether they are friendly toward trans people. When she asks them this question, and if they say, “Our office welcomes everyone,” that statement actually doesn't say anything. It tells me they don’t actually understand that it’s scary for a lot of trans people to go into a doctor’s office.
What's a better answer to that question?
Chong: If they’ve gone through trainings, then say, “Yes, we’ve gone through trainings, we are welcoming of trans people.” Or if they have never seen a trans patient, then just admit it. Say, “We haven't seen a trans patient, but we are aware that it can be scary.” Just something to acknowledge that there is an extra thing that you have to pay attention to. Be frank and do your homework. Don't put it on the patient to teach you, but be honest. Say, “I'll go learn about this or read about this.”
Nelson: In the movie, Dr. Greenberg, who's cisgender, white guy, been a doctor forever, he’s like, “Okay. Your gender identity is one more thing I have to take into account with your care.”
Chong: Your family, who you live with, your gender identity…
Nelson: And being conscious about possible complications around hormone treatment. He clearly thought about it. He demonstrated that he was aware of, in more than a superficial way, the issues that could impact a transmasculine person with breast cancer.
Brooks, in the film you talk about your experience with a doctor who was too nervous to properly palpate your stomach and who consequently missed what turned out to be a very large tumor. What advice do you have for doctors who might struggle with this kind of situation?
Nelson: Get over it. You’ve got to get over it. Struggle on your own time. I recently had to go to physical therapy related to scar tissue from my surgery. And the person I saw could not wrap her brain around me being a trans person. She's like, “No, you didn't actually have ovarian cancer, you had testicular cancer,” which means she thinks I'm stupid. I got to the point where I had to say: “No, my body was labeled female at birth. I had ovarian cancer.” It’s like, are you good at your job? If you're good at your job, then I want you to get over it and be good at your job. I don't want you to wallow in your guilt or any of that stuff. Because that's not my job to take care of you around that.
Chong: I don't expect people not to have any discomfort if they have never been exposed to or seen a transgender patient. But don't run away from the discomfort. Sit in that nervousness—it's okay. It means you probably don't know everything, and this is an area you have to learn more about. And this is not about you. Someone came here because they have a serious diagnosis. It's life and death to them, so you’ve got to pay attention to what's happening in front of you.
I generally love doctors, but in my experience, they don't like to be told that they don't know everything.
Chong: Right! So much in our culture, people who are smart, who have their PhDs and MDs, think they ought to be perfect. It's an unrealistic expectation of them, one that is put on them and they put on themselves.
To this point about naïveté: I am naive about the difference between top surgery versus a double mastectomy. Yee Won, in the film you talk about your experience of having both procedures. Can you talk me through the differences between them, both anatomically and in terms of your emotional experience?
Chong: I'll start with anatomically, because this is actually a problem in medical schools. Top surgery is when they sculpt your chest, so they remove some of the tissue from the breasts, but they don't remove everything because men do not have concave chests. Men have a little bit of breast as well, which is one of the reasons cisgender men can get breast cancer. Double mastectomy is when all the breast tissue is removed, and so the chest becomes more concave. At screenings of the film, we’ve had transgender people who’ve gone through top surgery come up to us and say, “My surgeon told me I don't have to worry about breast cancer anymore,” and that's a mistake. That is wrong. So that's the medical answer.
And then from an emotional standpoint, I’d say: I chose to have top surgery, and the cancer I didn't choose. And so emotionally it was like, “Wow, what a disappointment,” but at the same time, it is what it is. I have this body and I don't resent any part of my body. Also my transition isn't from being assigned-sex female to being a trans man. I don't identify as a trans man. That's why in a lot of the things you see, we describe ourselves as transmasculine. I actually identify as gender non-conforming. So based on all the experience that I've gone through, especially transitioning in middle age—I was in my forties when I transitioned, and a lot of what I went through before transition really shaped my life, including sexism. So I don't have any kind of regrets about my life experience or who I am. Emotionally, it's not tormenting like how I assume other people might think it is.
Brooks, I'd love to hear your perspective here as well. As a transmasculine person who has lady parts, how do you feel about those parts being responsible for the cancer?
Nelson: When we were doing some homework for this interview, I realized I have remarkably few lady parts left, because they’ve all been removed at this point. That was my first instinct to answer this question. And then my second instinct was, there's something else here, which is: One of the myths that we have to bust or address very frequently, is the idea that there's a direct connection between hormone therapy and cancer. Like all cultural myths, even within a micro community or micro culture, I also learned them. So I had to go through all that same stuff, like, “Did I cause my own cancer?” And I think that it's not uncommon for people to evaluate what they have done and feel like, “Why me? What did I do?” For me, the fact that it had this extra layering on it made it tough. But I think if I had a different kind of cancer, I think I would still have said, “What did I do? Is this my fault?”
Speaking of myth busting: Because it's so important to get your parts checked out, and because there can be a lot of negative associations with the medical system, what kind of advice can you give to members of the trans community about taking care of themselves and getting checked out?
Nelson: One piece of advice is to take a friend, to have somebody go with you. And Yee Won made the point about doing your research ahead of time and find a practitioner with experience treating trans patients. For folks who are in more rural areas, Planned Parenthood used to be where we would send people all over the country, and this is how everything that's going on right now politically is really impacting marginalized communities. Having so many clinics closed across the country has made it even harder for trans folks to get care. We've talked with doctors to figure out how to get folks to “Yes.” It's so easy to say, “No.” I can make one million excuses to not do something. But if members of the community are hearing from us, “If you’ve got the part, get it checked,” and they're also hearing from their provider, “I know this is uncomfortable. What's it gonna take? Let's make a plan together.” That is how that exam will happen.
Is there anything else you want to add?
Chong: There is one thing that we wanted to share with you. It’s about the title of our film. We wanted to make sure we set a tone that grabbed people’s attention, and kind of put some humor into it, because cancer sucks, and it doesn't have to be a movie that is all about sadness. But we want to make sure that people know, we are using the word “lady cancer” on ourselves. It’s like a self-claiming, because of being born female. But it's not necessarily a term that we are trying to get people to use. It's one of those things like, if you're of the community, and if you have that background, you can use that term. But other people, it's not appropriate for them to use. Would you add anything else?
Nelson: Language changes from moment to moment. By picking something as outlandish as “dudes” and “lady,” we knew they were never in. So they will never be out. It wasn't “gender non-conforming,” or “genderqueer,” or any of those very specific terms that have been used even in the last five to ten years, to acknowledge people who exist somewhere on that gender continuum. By naming it something just a little ridiculous, we also didn't date it. So it can remain relevant for longer. We actually get a little bit of grief about the title, like how unevolved we are for using terms like “dude” and “lady” and I'm like, “Yeah, okay, but you know exactly what the movie is about.”
For what it's worth, I saw that title and I thought, “I want to talk to those people.”
Chong: Well then it worked!
For upcoming screenings of Trans Dudes with Lady Cancer, visit the film’s website.
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“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” — Susan Sontag, Illness as Metaphor
I guess I'm very ignorant. That was very informative.