Meet Mike: Non-binary Stage III Breast Cancer Survivor

We spoke with Mike Hooves, a non-binary artist who shares their journey with Stage III ER+ breast cancer through art on their Instagram @mikehooves. On this International Transgender Day of Visibility, read on to learn more about one trans person's experience in the cancer community.

When were you diagnosed with cancer, and what has been your cancer journey so far?

I found my lump during a self-check in August of 2023– I received an official diagnosis of estrogen-positive (ER+) breast cancer at the start of September 2023. A month later, in October 2023, I had a flat-closure double mastectomy. My cancer was an aggressive Stage III, so from January until June 2024, I underwent chemotherapy, and I completed 16 rounds of radiation in July 2024. 

My current treatment plan consists of endocrine therapy– the medication I’m on shuts off my estrogen and places me into menopause. It’s not just ovaries that produce estrogen– your fat cells do too, and endocrine therapy targets both. For the next 7 to 10 years, I’ll continue on endocrine therapy. Then, who knows?

When I first entered treatment, I had no idea that it would take a full year for me to reach this new phase that I now know as ‘survivorship’. I’m so glad to be done with cancer being a full-time occupation, but I do wonder what is next. I’m still digesting and coming to terms with how it’s impacted me.

What are some of the differences you've noticed between a breast cancer patient's journey in the US and in Canada?

The Canadian healthcare system covers a lot of my treatment costs, which is the largest difference I have observed between the two countries. It's a massive relief that I didn’t have to worry about finances for treatment. But, because my treatments are covered publicly, there are often long wait times for treatment in the medical system. 

I keep tabs on new cancer treatment options being researched, trialed, and approved. Just a few months ago, there was a big treatment update that could change one of my endocrine medications to something shorter-term and gentler. However, living in Canada, there's a delay between the FDA approval in the US and the medication being approved by Health Canada. It can take anywhere from a few months to a few years for us Canadian cancer patients to receive the same line of treatments and medications that are established in America.

A great example of this is Veozah; a new hot flash medication making waves in the breast cancer community– the only non-hormonal hot flash medication currently in existence, making it the first viable hot flash medication for those with hormonal breast cancer. Veozah has been approved in the States, but I’ve been watching it in Health Canada’s approval queue for months now to see if it will move forward in Canada. It’s just recently been approved, thankfully, although it’s not covered here and is prohibitively expensive, just like in America.

As a non-binary person, what has made your journey with breast cancer different?

Breast cancer is highly gendered. Being a ‘woman’s cancer’ causes it to receive a lot of funding and visibility. But its branding as a cisgendered woman's cancer marginalizes anyone identified outside of that target gender. Men, trans, and non-binary people are erased and stigmatized. 

My cancer treatment is built from the majority, and makes my experience as a non-binary patient alienating, awkward, and upsetting. My medical team approaches my treatment from the established standard that patients are cisgender women - which I am not. Many medical spaces and support groups for breast cancer are women’s spaces. My experiences aren’t reflected in these spaces. Even a masculine name and a legal/medical ‘X’ gender marker don’t stop me from being perceived as a woman, although this in itself isn’t a new experience to me in the medical sphere.

As a non-binary person with breast cancer, I feel alone. I don’t really have a choice but to exist within established support spaces and care standards. With my limited capacity, I’m often forced to choose between my identity as a cancer patient, an AYA, or as non-binary. During treatment, a lot of my world urgently centered on being cancerous. So, I often found myself unable to educate or advocate, and instead I had to simply be a patient. Which was crushingly disappointing in that I not only felt that I was letting myself down, but that I was letting other present and future trans patients down, being unable to adequately represent that experience.

Trans-affirming care is not present in the world of oncology. Questions about why I would want to remove perfectly healthy breast tissue, or why I would want to take testosterone while having hormonal breast cancer were ever-present. The fact that I was trans and these were gender affirming decisions was something I had to present to my team. There’s so little information out there for experiences like mine. It makes it hard for my team to determine the importance of cancer eradication working alongside gender affirmation for my cancer treatment.

The medical community needs to work on the messaging and framework surrounding breast cancer. Many individuals in the trans community, especially trans men and non-binary people, have chest dysphoria. They don’t even want to look at their breasts or touch them. This is without all the gendered messaging surrounding breast cancer. There are scarce resources for trans and non-binary people for breast cancer detection or treatment. That’s part of why I decided to start drawing a comic and writing about my experiences. If people who have had the same experiences as me can find this, then they will feel less isolated and hopefully, more hopeful.

What advice do you have for others going through their own cancer journey?

1. Be open to support outside of your medical team. Throughout my cancer journey, I’ve never felt that I could rely on my oncology team for mental health support. They were there to fix the cancer. So, I needed to seek out support elsewhere. I made friends with breasties diagnosed at the same time as me, and AYA/trans patients on the same harrowing journey of cancer treatment. I branched into writing blogs and making comics to share what I was going through as an outlet and a flag to those like me.

2. Keep moving when you’re able! Going to the gym helped my mental and physical state so, so much. I was blessed to have a gym a couple of minutes away by foot. It gave me a routine and a sense of control, even when I only showed up to walk on the treadmill for 10 minutes. It also gave me a community at the gym through the kind regulars I’d encounter. I also believe moving my body softened the effects of my chemo. 

3. Don’t let the diagnosis itself stop you from doing what you want, and allow yourself to accept your current capacity without shame. With the help of some amazing friends, I planned and had my wedding during chemo, an absolutely incredible feat I am still so proud of. But really for most of my treatment the greatest accomplishments I achieved on a weekly basis were cleaning the kitchen, making a drawing, or going to the gym. There were a lot of days bedridden, and that's okay. My number one goal was to get through treatment, and I achieved that by doing a lot of nothing. 

As an AYA cancer-haver, what made your journey different? How did having cancer affect your life goals as a young adult?

When I turned 30, I thought, “I’m not a spry young twenty-something anymore, I’m old.” But when I was diagnosed with cancer it was remarked constantly how young I was by both medical professionals and pretty much everyone else. I definitely felt my youth because cancer care is built to serve out a demographic much older than me. It was common for me to be the youngest person in the cancer spaces I resided in, and it was common to see resources depicting and catering to older people. You feel like a bit of a pariah.

Cancer treatment systems are built out for older people who are twilighting. They’ve retired. They’ve made their money and have savings. They’ve achieved much of what they set out to do and don’t have many major life events ahead of them to prepare for. By contrast, I was planning a wedding, I’d had what I hoped was a long-term job, my illustration practice had momentum, and we were starting to save money for a home. Receiving a cancer diagnosis destroyed all of that. Now I’m in survivorship trying to figure out where to pick up and what to let go. My life trajectory is feeling very different and a lot more difficult.

I’m now in a phase where I have to pick up the pieces of my life and figure out what I’m going to do and who I am now. I still have a long time to live. I worry about whether my treatments will affect my life negatively as I age. How will the effects of chemo impact me in 30 years? Is menopause at 32 going to cause dementia and osteoporosis? How will my muscle change where it was irradiated? I have so many concerns that a cancer patient 40 years older than me may not have.

Finding work is a whole can of worms. I have a big hole in my resume, and I’ve learned that bringing up cancer as an explanation creates a whole new, and often worse, problem to employers. How do I disclose that I’ll need time off for medical appointments? I have cognitive impairment and physical issues from my treatments, and they flare up in stressful situations. I’ve experienced it in interviews, and I wonder what they will be like at a job. How does one even disclose such things? Gosh, it’s truly frustrating and upsetting, and it’s made reintegration so difficult.

As an AYA, I feel like I’m trying to play catch-up and that I’m never going to be on the same level as my peers. How do I function with the new health issues I have? You get a perspective on life that many people my age don’t have to ever think about. It makes it harder to relate to them. Even now, I struggle with employment. Why would I even want to work after an experience like this? I just want to enjoy life as much as possible. Some of my priorities are the same, but others are so different from the priorities of a normal person my age. So I try not to compare myself.

As you exit active treatment, where do you feel like you need more support?

We subscribe to the narrative of going through treatment, fighting cancer, beating it, and then returning to your life. It’s easier for people to assume that I’m back to ‘normal’. But I’m finding that there is no ‘returning’, nor is there ‘normal’. I wish people would still check in on me and offer the care that I once had because I looked sick. I’m still receiving long-term treatment, and I face many side effects from cancer treatment. The difference now is that I have longer hair and a healthier complexion. 

Friends, family, and colleagues love to say, “I can’t even tell that you had cancer”, or “you’ve beaten cancer.” I don't like it when people say that. It may not look to you like I had cancer, but I can feel it. Much of the time, I feel like cancer has beaten me. 

When we talk about cancer treatment and having cancer, the focus is on active treatment. I felt supported by my oncology team and my community during active treatment. In survivorship, you’re left to figure things out on your own. There’s not a lot of support afterward from your medical team or from people in your life.

I don’t want my experience erased just because I’ve finished chemo. I’m not done with cancer, I’ve medication to take for many years before I’m “finished.” It’s an incredibly difficult transition being very ill with a regimented treatment schedule back to an open life with plenty of thinking time, so I would like for that narrative of people being “done” with cancer to end. I don’t need an explicit “Oh my God, are you okay?” I need a simple acknowledgment rather than an assumption that things are all back to normal.

As a trans patient, I would like support in upholding my trans identity medically. More studies on trans cancer patients, more representation in resources, and less gendered language. I know I am a part of that equation and I have a responsibility in sharing my experience and perspective. But there are times when I need to exist as a patient rather than an educator. I do have a lot of hope that this can happen – I’ve encountered exemplary inclusion from medical professionals throughout my journey. There are allies and community members doing the work, and I’m excited to be a part of this surge of visible trans representation in breast cancer care.

Photo courtesy of author.