“Medical providers made assumptions about both my gender and sexual orientation. I was stressed enough and didn’t have the energy to correct or inform people”
– Transgender OUT Cancer Survey respondent
PersonalStoriesExperiences
There are many transgender people across the country who have a cancer story. All of the stories listed below are from transgender people from all walks of life that all have the common experience of navigating cancer-related healthcare as a transgender person. They’ve all shared their stories in the hopes of bringing awareness to the many barriers faced by transgender people.
Caroline (She/Her)
“I was diagnosed five years before I realized that I was trans. I have Thymoma stage 4 incurable. Thymoma is really rare, and it’s a cancer of the thymus gland, which is the gland that creates your immune system. When I realized that I was trans, I first reached out to a therapist and then I was connected with the Gender Clinic at our local hospital in downtown Indy. I talked to my oncologist and he started doing all of this research to figure out if hormones would affect the Thymoma I have or the chemotherapy I have. He said that it didn’t look like it would so it should totally be fine. Once I was armed with that, I began the public transition and started going to appointments as me. I don’t know how much longer I have. I’m incurable. I have five years and every treatment I do extends that timer so if I go untreated for five years, then I’m out. So if I’m going to go, who do I want to be when I go? Isn’t it better to have fives years as who I’m supposed to be versus a lifetime of someone I’m not. Isn’t that worth it?”
D. (They/Them)
“In about 2000, early 2000s, I had been thinking maybe I am nonbinary and maybe I am going to do a transition. I got diagnosed in 2011 with something called granulosa cell tumor ovarian cancer. I have a gendered cancer that’s associated primarily with women. In the beginning, I think I was mostly in a fog about the fact that I had this diagnosis. Over the next 3 to 4 years, I’m just doing surveillance, getting scans and moving more toward wanting to move deeper into transitioning. In May 2015, I doubled over in pain and there’s a recurrence of the ovarian cancer and it’s metastasized. June of 2015, I had surgery and they removed a big tumor from my appendix so I had to delay top surgery. In 2016, I had talked to my primary care doctor about taking testosterone, and unbeknownst to me he talked to my Gyn Onc and then reach out to somebody in San Francisco, an endocrinologist specialist, to talk about my cancer and my ability to take hormones. I can’t remember who delivered the news, but they basically were saying ‘yeah, you can’t take testosterone’. I was pissed. I felt very disempowered. They were all men and had these conversations and then reported back to me. I wasn’t involved. It’s hard to really fully be who I want to be so I’m kind of living a half-life. It’s not that I’m not happy, but when you see yourself one way but the world see you a different way, it’s just really hard to reconcile. I have cancer and then I have a really rare kind of cancer and it’s gendered and going to stop me from doing other things I want to do in life. I’m still working on trying to come up with the words to really express how I feel about it. I’m living my life and it’s only in those quiet, meditative times when I allow myself to connect with the feelings that I realize it’s just a big loss.”
Karen (She/Her)
“This was back in the 50s, but ever since I was 5 or 6 years old, every night I would go to bed wishing that I woke up as a girl. In June of 2016, I went in for a normal physical and they said that my white blood cell count was elevated and asked if I had an infection. By early July my white blood cell count was still up so they said I needed to go to the Rocky Mountain Cancer Center. It wasn’t until August or September 2016 when they figured out what kind of blood cancer I had. They diagnosed it as Hairy Cell Leukemia, which apparently is pretty rare. I’ve been very lucky in the past 5 years not to have had any transphobia problems with doctors, but when you switch providers or get new people added to your team it’s exhausting sharing your story constantly. My doctor had a small unit during medical school about transgender patients and felt comfortable enough learning more as she treated me. Doctors need to learn what hormones, both estrogen and testosterone, do to the body of someone who is transitioning. Also, don’t just assume that we’re messed up in the head. If you’re a trans person with cancer, you need to make sure that your doctors and yourself are aware that being trans has nothing to do with your cancer. You don’t have cancer because you’re trans. Fight like hell to get the doctors to do what they need to do, and if you feel like they’re not doing what they need to do, go see another doctor.”
Eliot (They/He)
“Between half a year and a year ago, I went for a top surgery consult. That night I found the cancer and I guess that saved my life because it’s a very fast-growing cancer. I think I’ve been pretty much at war with my body my whole life. Especially to be transmasculine and have breast cancer is…that’s just insult to injury. I have tried to go without testosterone for that 5 year mark and I don’t think I’m going to make it. I was really mad. I am still mad that there’s not enough information about whether testosterone is going to harm my situation. My first oncologist didn’t have any experience with trans people and it was hard for her to make the leap for why quality of life is so connected to T for me. My eyebrows used to be really full and bold. A lot of those changes that I made were undone and that was so hard. My therapist has gotten through to me that ‘sometimes complaining is an act of service for the person who comes after you’. I’m not okay with how I was treated and I don’t what the next person to be treated that way either.”
Graham (They/Them)
“I was diagnosed with a cancer Mucoepidermoid Carcinoma. It presented as a pimple but I wasn’t too worried because I thought it was just a mouth infection. The dentist kind of talked me out of further treatment and discouraged me from doing anything further. I went to a couple of other dentists and neither would commit to telling me what was going on. I went to another oral surgeon and he finally biopsied it. I could have fallen off the seat from hearing the word ‘cancer’. Cancer was a wake-up call to live the life you want to live. My internist wasn’t really involved in my treatment. She was upset about trans people who are ‘taking’ top surgery away from cancer patients and I was thinking how people are dying over this. I can pass as a cisgender female very well, so sometimes I lean too hard on that privilege of passing since I know I’ll get better treatment. I should prioritize finding queer-friendly providers.”
Support + Resources
“Hearing that folks had gotten through it was one of the most important things that helped me.”
Many cancer resources often don’t discuss what it’s like to be transgender and have cancer, leaving folks to feel even more isolated in their experience. Based on data from the OUT Cancer Survey, we started LGBTQ+ cancer peer support groups for those at any point in their cancer journey to build community with others.
“People from the LGBTQ+ community face discrimination in medicine, whether it be explicitly stated or an implicit bias. This has impacted their access to screening methods, important in our efforts to reduce risk for invasive cancers and to catch cancers at an earlier- and oftentimes more curable- stage. It is up to the cancer community to meet their needs and this includes creating a safe and welcome environment and ensuring the entire cancer care team receives the necessary education and resources to provide it. Everyone deserves a life after cancer. Everyone.”
-Dr.Don Dizon, Oncologist
“Be your own advocate. Be clear with your healthcare providers. Bring someone with you to all your appointments. It’s your body, your life. Fight for it!” – Transgender OUT Cancer Survey Respondent
Advocating for yourself to healthcare providers and communicating your needs to your support system can be challenging. It can be a challenge to be addressed by the correct name, have your support system respected, and navigate cancer all at the same time. While every trans patient has a different relationship with their healthcare team, it’s important to feel comfortable talking with your healthcare providers about relevant health concerns related to transitioning or cancer.
“There’s no research. That’s what my doctor said. ‘If there was research, I would feel better, but it’s ultimately your choice.’ Basically, he said ‘no’.” – D (They/Them)
“My oncologist really wanted me to stop T during treatment. I didn’t want to so I didn’t and everything was okay. I think he didn’t know how it would affect treatment. Every time I saw him he asked if I was willing to stop T.” – Transgender OUT Cancer Survey Respondent
Hormones and Cancer
While there have been many successes for transgender people in society, the inclusion of transgender people in clinical trials and studies, specifically about hormones, has been severely lacking. We do know that for those that want hormones as part of their transition, hormones can have a significant impact on quality of life and mental health. Many transgender people who have cancer are told that there isn’t enough research about the long-term effects of hormones on cancer or cancer treatments. If you are an individual seeking hormone-related transition care, it’s important to communicate with your doctor about your concerns and make sure that you are involved in deciding what is best for you.
Get Screened
Cancer screenings are an important practice for transgender people to protect our health. There are several barriers that can keep transgender people from getting screened including:
– Discrimination
– Lack of insurance
– Physical discomfort or dysphoria with exam
Are you unsure about what questions to ask your doctor about cancer screenings? Check out this list of questions to ask about screenings. Are you looking for an LGBTQ+ -friendly provider for cancer screenings? Check out our provider database.
Not sure what cancer screenings you should discuss with your doctor? The following suggestions are based on the University of California, San Francisco’s Transgender Care guidelines and the American Cancer Society’s recommendations for screening. It’s important to start a conversation with your doctor about screening recommendations that are right for you.
Screenings are recommended to start at age 25 and continue past age 50 unless the cervix is surgically removed.
Screenings are recommended starting at age 50. HOWEVER, if you are black and have a prostate, screenings are recommended starting at age 45.
Trans men and non-binary people with breast/chest tissue: Self-exams should begin at age 20 and be done monthly with exams by a medical provider done every year. If you’ve had reduction (not reconstruction) top surgery or haven’t had top surgery, a mammogram is recommended every year. If you’ve had reconstruction top surgery, annual exams with a professional should begin at age 40 and done every year.
Trans women: Beginning at age 50 and after 5 or more years on hormones, self-exams should be done every month with an exam and mammogram recommended every year.
You can find information about how to do breast/chest self-exams here.
Screenings for lung cancer should begin at age 50.
Screenings are recommended starting at age 45.
