Key Takeaways

• Transgender individuals with cancer face unique challenges and barriers to accessing high-quality, inclusive oncology care.
• Oncology healthcare professionals can better partner with transgender patients on their treatment journey through working to understand these barriers and implementing low-cost strategies such as listening to their patients, using inclusive language, and being open to learning.
• Although healthcare professionals can make small, immediate changes that will have an impact on an individual level, positive changes at the institutional level will have a more widespread effect on the experience of transgender patients and be longer lasting.

Transgender individuals with cancer face unique challenges to accessing high-quality, inclusive oncology care. By understanding these challenges and implementing low-cost strategies to overcome such barriers, healthcare professionals (HCPs) are better able to partner with transgender patients in their treatment journey.

In this commentary adapted from a conversation between a transgender individual and an oncologist, Yee Won Chong, a consultant and strategist for social justice and equality, relays his experience navigating the healthcare system as a transmasculine individual during treatment for breast cancer to Norma Steiner, MD, a gynecologic oncologist who has experience caring for transgender patients with cancer.

Yee Won is also one of the filmmakers of the documentary Trans Dudes with Lady Cancer, which draws on his experience as a survivor of stage II breast cancer.

Yee Won, can you please tell us a little bit about your experience filming Trans Dudes with Lady Cancer?

Yee Won Chong:
Trans Dudes with Lady Cancer is a documentary that captures the cancer journeys of myself and my cofilmmaker and housemate, Brooks Nelson, who also identifies as transmasculine. We each were diagnosed with cancer around the same time. Considering we lived under the same roof, we decided to leverage our background as activists and experience using film and storytelling as a way to try to make the world better by capturing our experiences being treated for “lady cancer” as transmasculine individuals.

We will talk about the importance of language in transgender care during this conversation, but I also would like to point out that context matters, which I will use the name of our documentary to illustrate. Trans Dudes with Lady Cancer could have been named a thousand other things, but we intentionally gave it an absurd title for a few reasons. First, we chose the title to convey content and tone. Cancer sucks, and we wanted to make the most uplifting film about cancer that we could—both to celebrate all the support we received and to inspire and drive action within and outside the medical world around transgender healthcare. 

Also, the idea that the words in the title reinforce the gender binary did not escape us. Neither of us identifies as a “dude”! The only time Brooks and I use the word “dude” between us is to yank each other’s chain and get the other person to pay attention—for example, “Dude! Did you leave that dirty dish in the sink I just cleaned?” Context matters. Although we can use “dude” or “lady cancer” as a joke between us, when providing care, it is never appropriate to say “lady cancer” to any of your patients. We hope the title stops people in their tracks and they do not just go about business as usual. Our goal is for HCPs to think critically and be open to learning more from our experiences and the film.

I will add that the documentary is how I met Dr Steiner.

Norma Steiner, MD:
I had the pleasure of meeting Yee Won through his housemate, Brooks, who is a patient of mine, when they asked if I would be in their film. At the time, I had very limited experience with transgender care, which I believe was representative of the medical community at that time. I am a Western-trained gynecologic oncologist, and when I graduated medical school 20-some-odd years ago, transgender care was not part of the curriculum. But taking part in the documentary interwove transgender care into my story. Seeing what their experience was like in healthcare really stuck with me, and I couldn’t unsee it. I realized that I am in a position within the medical community to make a difference in the evolution of care for the transgender community and continue to work toward inclusive and equitable care for this patient population.

Yee Won, as a young breast cancer survivor, transgender individual, and activist, what do you recommend HCPs consider when providing care for transgender patients?

Yee Won Chong:
I generally recommend the following framework composed of 4 aspects to help HCPs understand key considerations in providing care for someone who is transgender.

1. Emotional: The emotional aspect is at the heart of this framework and refers to what transgender people go through. Being transgender in our society is not easy and can come with a lot of emotional burden and minority stress.
2. Social: The social aspect involves getting to know the patient to build trust and intimacy. What is their name? What are the pronouns they use? Who are they in relationship with? The family structure of many transgender people can be nonconventional.
3. Medical: The medical aspect involves finding out what terms the patient uses for their anatomy, along with making sure transgender patients receive appropriate healthcare based on their sex at birth and organs present.
4. Legal: The legal aspect includes what is needed for documentation purposes. What is their legally documented sex—their gender marker—in the clinic’s records? How are they documented for purposes of insurance and perhaps clinical trials?

What is your biggest concern when you go to an appointment with a new HCP?

Yee Won Chong:
I want to know whether my HCP understands the unique circumstances I might go through as a transgender person and whether they are open and accepting of me. They certainly do not need to know everything; it is far more important that they are open to knowing and learning, particularly on their own.

I was fortunate to have a primary care physician who did some of the legwork for me to find inclusive care when I was diagnosed with breast cancer and in need of an oncologist. However, other transgender people sometimes have to do the legwork themselves, which often involves calling a clinic and asking if the HCPs there have ever seen someone who is transgender. Sometimes the answer is, “We are welcoming of everyone, and we treat everyone the same.” That answer is particularly unhelpful because it does not tell me much. I would prefer more specificity and honesty in an answer, even if it simply acknowledges that the HCPs have never seen a transgender patient before, and although they might stumble, they are open to learning what they need to know to provide inclusive care.

Dr Steiner, what was it like seeing your first transgender patient?

Norma Steiner, MD:
It was a lesson in humility. I have this vision of myself as being open minded, even keeled, and calm when facing uncertainty, such as during surgery. Before the visit, I thought that although this would be a new experience, I would be able to handle it. However, what actually happened was that I was so nervous about using all the right words that I was tongue-tied and even started sweating. I stumbled on the vocabulary, and I could see my medical assistant giving me a look of surprise. I was fumbling and so far off from that vision I set for myself.

Looking back, I have to laugh at myself. I think this situation is hard for the medical community—there is a lot of pressure for HCPs to have expertise on everything. We feel we must know and have all the right answers.

Now that I have more experience, I would have told myself to be natural, to recognize that it was a new experience for me, and to not try to fool anybody into thinking that I was comfortable. Now, I try to acknowledge when I do not have all the answers and when I am not as fluent in vocabulary, and I ask patients to be partners in a process where I may not get it right but am willing to learn. I realize that being as transparent as possible builds more trust than trying to have all the answers.

Yee Won Chong:
Frankly, I would prefer that honesty. There are a lot of nuances in transgender vocabulary, which continues to evolve and may be challenging to keep up with—not even I know it all. For example, in the past, we may have asked someone about their preferred pronoun. Now, the question is just, “What is your pronoun?” I also recommend against asking people for their “gender pronoun” when what we really are talking about is what someone’s third-person pronoun is. There is a tendency to use pronouns as a shortcut to understanding someone’s gender identity, but there are so many gender identities that cannot be reduced to specific pronouns (eg, he, she, they, ze).

Norma Steiner, MD:
Thank you for admitting that not even you know it all, Yee Won. Honestly, in that first visit, the pronoun situation was so dizzying for me that I even had a hard time figuring out how to introduce myself, so I appreciate knowing it can be confusing for you too. I also would like to reiterate for our HCP audience a key point you just made: We as HCPs need to understand that this language is continuously evolving and have a little bit of compassion for ourselves for not having all the right answers right away—and just be willing to learn.

Yee Won Chong:
I would like to add that in many cases you might not even need to know a patient’s pronouns or anything about their gender identity at first, depending on the reason they are coming for their visit and whether they bring a support person to whom you would need to use the patient’s third-person pronouns. You will, however, need to know their first name, so at first introduction, I suggest starting with asking their name. Along with knowing how to address the patient respectfully, it is important to know if the name on the patient’s legal documents (eg, driver’s license, medical record, and insurance card) is different from the name they use for themselves. Changing a legal name is not easy because there are so many different documents, and changing them all can be cost prohibitive. HCPs should try to avoid “deadnaming”—referring to someone by their legal name when they actually use a different name—because that is a quick indication that the clinic might not be a welcoming environment.

Yee Won, what do you suggest an HCP do when they fumble with language and/or make a mistake, such as using the wrong pronoun, when talking with a transgender patient?

Yee Won Chong:
I would suggest simply apologizing and doing so with sincerity. There is no need for a long explanation, rationalization, or a promise not to do it again. HCPs are human and, being human, will fumble again and be imperfect.

Norma Steiner, MD:
I think many HCPs feel really uncomfortable and flustered in this situation. I would suggest saying something like: “I'm sorry. I got that one wrong, and I may get that wrong in the future. Would you mind correcting me so that I can continue to learn and practice to get it right?”

What advice would you have for the oncology care team on how to sensitively approach a transmasculine person needing care for “lady cancer”?

Yee Won Chong:
First, be aware that some medical terms are gendered, and try to use a different term. For example, instead of “breast exam,” say “chest exam.”

Second, bear in mind that sometimes you may not know what anatomical parts a patient has simply by looking at them, especially if they are a cancer survivor. It is helpful to read notes in their chart thoroughly, especially when seeing a patient for the first time, and to keep a careful inventory of each patient’s organ status. This will help HCPs understand whether a patient still needs certain cancer screenings.

Furthermore, it can be unwelcoming for a patient to receive reminders about routine screening for a particular part the patient does not have, such as sending a reminder for a Pap smear (which I will note is a gendered term) to a transgender woman who does not have a cervix; that reminder also can undermine the patient’s confidence in their healthcare team.

Norma Steiner, MD:
Degenderizing terms for anatomy can be challenging for HCPs. For example, as a gynecologic oncologist, I am learning how to use words other than vagina or vulva when performing pelvic exams. Instead, I might say something like, “I am going to use a speculum to look inside the canal or the tube.” I consider the degenderized term to be fine as long as the patient knows what we are talking about and is clear on what we are going to do. It is important to pause before the exam and explain the process beforehand for all patients, but even more so in situations where the patient does not identify with the body parts that need to be examined.

Yee Won Chong:
I also want to emphasize that HCPs should not be afraid to touch a trans body. I do think that some HCPs have discomfort when examining a transgender patient, perhaps because they are uncertain what parts this person has or because this is not someone they typically see. HCPs must get over that discomfort to provide equitable care, even when it comes from concern about being disrespectful, for example, the HCP might worry that it would be disrespectful to examine the chest of a person who is transmasculine presenting. But if the HCP does not do the examination, they could miss a life-or-death issue, such as cancer.

Norma Steiner, MD:

We HCPs must find a way, even though it is uncomfortable. I would approach this situation by having a conversation about why you want to examine a specific body part and then asking permission to do so. I might say something like: “When I’m hearing your story, I am thinking that it would be important to examine ‘blank’ because I want to make sure that your pain is not coming from ‘blank.’ Would it be okay if I do that?”

Yee Won Chong:
That is very reasonable. I often share the story of how my primary care provider routinely examined my chest every year. Then one year, even though I felt fine and had no symptoms, she found a lump. It was so hard to find that when I went to the oncologist, he actually had to ask me for help locating the tumor, even though it was already stage II breast cancer. If my doctor had not examined my chest, years could have gone by, leading me to develop and be diagnosed with more advanced disease.

Yee Won, would you comment on the state of data on cancer care for transgender patients?

Yee Won Chong:
In my experience, HCPs often do not quite know what to tell me regarding potential side effects of certain anticancer therapies, including the effect of taking testosterone, because there is just a lack of data altogether. A major reason for the paucity of data is that cancer registries track gender in a way that makes it challenging for HCPs to discern assigned sex vs gender identity. We are starting to see a bit more tracking of assigned sex vs gender identity, but overall there is still a lack of both data and research. This dovetails into the legal aspects of being transgender when we consider that even the US Census Bureau—the biggest collector of demographic data in our country—did not include questions about gender identity in their every-decade survey in 2020. Without these data, a whole community of people will get lost.

What has your experience been with medical insurance?

Yee Won Chong:
I actually have a pretty fascinating story to capture my experience with insurance. When I was diagnosed with stage II breast cancer, my gender marker with the hospital and insurance was M for Male. Thus, when I went to the hospital for a breast MRI, for example, the HCPs would use the “he” pronoun with me. However, later, when I went in for my surgery, the people at the front desk referred to me as “she” (my third-person pronoun) to the caregivers I brought with me, much to my confusion and consternation. After the fact, we determined that either the hospital or insurance changed my gender marker to F for Female without informing me when I needed a transvaginal ultrasound.

I was checking in for surgery and in no place emotionally to talk to the person at the front desk. When I went back to the presurgical exam room, one of the support people with me informed the front desk that they used the wrong pronoun. Many well-intentioned staff then came into the presurgical room to try to figure out what to do—should they change my gender marker in their records? We told them not to change it in their records because I was about to go through a surgery that the healthcare system perceives as female related, and if we changed my marker back to M, there was a chance that insurance would not cover it. All I wanted the staff to know was that I use he and him pronouns.

This story also highlights how the framework I mentioned above—which differentiates between the emotional, social, medical, and legal needs of transgender individuals—can be helpful to HCPs in understanding key considerations in providing transgender care.

Norma Steiner, MD:
Yee Won, I am sorry that you had to go through that. I would encourage the medical community to pause and ask good questions if we see inconsistencies, such as when someone appears male but has the female gender marker in their chart and is undergoing a female-related surgery. Simply pausing and asking, “How would you like to be called?” could perhaps alleviate some tension before undergoing surgery, which is scary for everybody

We are behind as far as the gender check boxes and billing. There is no way to capture the person from a billing standpoint. Sometimes even the name of the exam type—such as the “well woman exam” at my institution—can be gendered. Hopefully, the terminology will catch up to properly reflect and be consistent with the specific type of care we are providing to our patients.

Yee Won Chong:
That is a great point, Dr Steiner. I would like to add that as much as individual HCPs can try to be inclusive, if the institution is not there to support them, then the HCP and patient may have to navigate a lot of complications. As such, I would like to encourage our HCP audience to pursue any opportunity that arises to have these types of conversations with their institution. Positive changes made at the institutional level will have a more widespread effect on the experience of transgender patients and be longer lasting.

Norma Steiner, MD:
I have an example to share to that point. A couple of years ago, our electronic medical record system started allowing us to have pictures of patients, so now when we open a chart, we can see what the person looks like, giving us a first clue about whom we will be caring for. More recently, the patient’s pronoun and what they like to be called also started being listed under their picture. These 2 fairly simple changes have gone a long way in my ability to tailor care for a given patient.

Another easy change I could see being effective is to allow written comments in an ordering section directing staff to ask their supervisor if it seems like a particular patient does not need what has been ordered, instead of the staff making assumptions. This suggestion is based on a recent experience I had involving a transmasculine patient of mine who had undergone top surgery and was finding it challenging to schedule a mammogram. This patient has a mutation predisposing them to breast cancer and thus needs a mammogram and MRI twice a year. However, the receptionist at the front desk of our radiology department denied a mammogram was necessary for this patient and wouldn’t book an appointment. All it took to fix this issue was for me to make a call to the radiologists to let them know what was happening, and they had a conversation with the staff.

If either of you had a magic wand, what would you do to improve healthcare for transgender individuals?

Yee Won Chong:
I would have the topic of transgender healthcare be included in medical school on Day 1. It should not be an elective. It should not be optional. It should be part of the core curriculum.

Norma Steiner, MD:
I agree. What I wish for is consistency throughout the whole healthcare experience for transgender people. To create a more inclusive environment for this population, we should map out the experience from the second the person reaches the building and checks in through to seeing their physician and going for a lab draw or imaging. We really have an opportunity to provide much better care for transgender individuals without major costs.

Want to Hear More?
An unabridged version of this conversation is available as a podcast here.

Your Thoughts?
What challenges have you faced when performing cancer screenings and providing cancer care to transgender patients? Please answer the polling question and join the conversation by posting a comment.