I'm A Breast Cancer Survivor. I Was Slighted And Belittled Throughout My Treatment.

"I felt unheard and unseen. My doctor sent me to a breast database to find my 'new boobs.' I sobbed as I searched."
The author in the recovering room following her breast cancer surgery on March 28, 2023.
Courtesy of Joy Jenkins
The author in the recovering room following her breast cancer surgery on March 28, 2023.

I was scared as I approached the receptionist at my oncologists’ office. I had recently been diagnosed with breast cancer at age 56 after my annual mammogram. I didn’t know yet how bad things were. Was I going to die? Had they caught it early enough?

“Hi, I’m Gina, I have an appointment,” I said in my feminine voice to the unsmiling receptionist.

She took one look at me — I have very short hair and was wearing men’s cargo shorts, a T-shirt and a backward baseball hat — and made the look I see a lot as a gender-nonconforming lesbian in Texas. Her body language said clearly: I don’t approve.

“Sir, fill this out,” she told me and handed me a clipboard.

The receptionist next to her corrected her: “I think it’s a ma’am.”

Then they both laughed as I stood inches from them, humiliated. Did they laugh out of nervousness or homophobia? I cannot know for sure. But I felt violated and angry and marginalised.

Being called “sir” didn’t bother me that much. I wear clothes society has assigned to men, so it happens on occasion. Sometimes it feels good — a tangible reinforcement of my androgyny.

This was different. It was hard not to see the receptionists’ words and laughter as anything but hostile. Being called “it” stung.

A cancer diagnosis is traumatic for everyone. It launches a cavalcade of emotions and fears: What’s going to happen to my body? Will life ever be normal again?

Navigating breast cancer as a gender-nonconforming person adds challenges. This may be particularly true in Texas — a state openly hostile to people like me, with dozens of pending anti-LGBTQIA+ bills in its state legislature.

Breast cancer is a very gendered disease. Less than 1% of the roughly 280,000 people diagnosed annually in the United States identify as men, according to the Breast Cancer Research Foundation.

Treatment and support for breast cancer also felt very gendered to me, in a way that made me uncomfortable. The swag from nonprofit foundations that is supposed to help patients feel supported left me feeling swathed in a sea of pink, a colour I wouldn’t normally wear. Even having such a femininised disease made me feel more feminine and, as a result, less like myself.

The author at the beach in Maui, Hawaii, in early January 2023 during a trip with her girlfriend.
Courtesy of Joy Jenkins
The author at the beach in Maui, Hawaii, in early January 2023 during a trip with her girlfriend.

The health care system, like all of society, is set up to assume breast cancer patients are straight, married women whose breasts help define their femininity. Anyone who falls outside this norm likely feels odd, as I did. The slights might seem small ― and were likely unintentional ― but they cut deeply during a time when my emotional reserves were already depleted from the depression and anxiety that comes with a cancer diagnosis.

I felt this acutely when my health care workers started to discuss the reconstruction that would come with my partial mastectomy to remove my cancerous tumour. One of my doctors assured me my tumour was small, and they could save my breasts. Another health care worker advised that I could get implants and use fat from my stomach to make my breasts bigger and firmer. I don’t doubt they meant well, but it felt to me like no one even considered that I might not want bigger boobs.

When I explained to one of my surgeons that I am a gender-nonconforming lesbian and wanted to downsize, I felt like she didn’t understand why I was sharing my sexuality. I felt unheard and unseen. She sent me to a breast database to find my “new boobs.” I sobbed as I searched because I couldn’t find breasts as small as I wanted.

I had suffered from breast dysphoria for decades ― before I even knew the feeling of disconnection from my own body had a name. As an adolescent, I tried to hide my large breasts by wearing baggy shirts and rounding my shoulders to cover them. When I got older and realised I was a lesbian and gender-nonconforming, I wore a compression bra to flatten the girls under the men’s button-down shirts I wore.

My diagnosis with breast cancer intensified my dysphoria. I wanted to rip my breasts off my body. These breasts — a part of my body that had caused such emotional discomfort — were trying to kill me. At least, that’s how it felt.

The idea that I might be able to get relief from this dysphoria with a reduction of my D-cup breasts during my cancer surgery felt euphoric. I was terrified that I would go through all this — surgery, reconstruction and recovery — and end up missing out on the one silver lining of this diagnosis, smaller boobs, because what I wanted wasn’t normal.

It’s not that my surgeon refused to make my breasts as small as I wanted. In my experience as a gender-nonconforming person, society polices you much more subtlety than that. It’s like when I try to get my hair cut in a very short, masculine fade. I tell the hairdresser what I want, and she assures me she gets it. But then I end up with a poofy, feminine do.

Society wants women to be pretty, and prettiness is defined in part by feminine hair and curvy breasts. I worried that I would end up with bigger breasts than I wanted just like I’ve ended up with longer haircuts than I wanted.

In the end, I was able to explain to the surgeon what I wanted, but the anxiety of fearing I was unheard was overwhelming.

The author (left) with her girlfriend, Joy Jenkins. "We gave each other these T-shirts and took this picture a week before my cancer diagnosis," she writes. "I'm 5'2" and Joy is 5'8"."
Courtesy of Gina M. Masullo
The author (left) with her girlfriend, Joy Jenkins. "We gave each other these T-shirts and took this picture a week before my cancer diagnosis," she writes. "I'm 5'2" and Joy is 5'8"."

Another challenge I encountered is the assumption that a breast cancer patient’s support person will be a man, most likely her husband. Again and again at various appointments and procedures, health care workers asked the name of my support person. I’d give my girlfriend’s name.

The inevitable question: “What is her relationship to you?”

I’d respond, “She’s my girlfriend.”

“OK, I’ll put friend,” the health care worker would say.

“No, she’s my girlfriend, as in girlfriend-girlfriend,” I’d explain, feeling like I was in junior high.

Why did this bother me? By calling my girlfriend a “friend,” they were demoting her role and value in my life in a way that made me feel like I don’t fit. It marked me as abnormal. That felt exhausting. I also know it’s different for straight women because I was married to a man before I got divorced and realised I was queer. Never once in the many times he went with me to doctors’ appointments or procedures did any health care worker ever question who he was. They assumed he was my husband because that’s what is normal.

Outside the health care establishment, the support systems set up for breast cancer patients felt inhospitable to me. I couldn’t initially find queer social media spaces for people with breast cancer, so I joined a bunch of general breast cancer Facebook pages and followed similar accounts on Instagram. I needed to hear from other people that I could get through this.

While these sites provided some support, they felt othering. One offered tips for revving up your sex drive after a cancer diagnosis, a common problem because of depression and medications that treat cancer. Every tip focused on penis-in-vagina sex, as if people like me do not exist.

When I finally met a queer person also facing breast cancer, it was a beacon of hope because she got how hard this is for people like us.

We can do better. It would have helped me if employees at my oncologists’ office had gender-sensitivity training that teaches them not everyone navigates breast cancer in a typical way, looks the way they expect, or has a heterosexual partner. Medical forms should be changed to provide space for same-gender partners. Nonprofits that provide resources for breast cancer patients should consider that not all patients are hyper-feminine women who want bright pink swag. We need to create more inclusive queer-friendly social media support spaces for all types of illnesses, including breast cancer.

It has been just over six months since I was diagnosed on February 17, 2023. My cancer was caught early, Stage 1C, and my post-surgical biopsy showed no evidence of disease.

But my journey as a breast cancer survivor is just beginning.

I recently finished up 16 radiation treatments to kill any specks of cancer that might be hiding in my body but are too small to detect. Now I have up to 10 years of daily pills to block oestrogen, the hormone that fed my cancer. These pills are supposed to help prevent the scariest part of a breast cancer diagnosis — recurrence or spread to another part of the body — but they come with a long list of side effects, from night sweats to heart disease, that I may have to navigate.

The author about a week after breast cancer surgery on March 28, 2023, showing off her nearly flat chest.
Courtesy of Gina M. Masullo
The author about a week after breast cancer surgery on March 28, 2023, showing off her nearly flat chest.

I am no longer the person I was before I heard the words, “I’m sorry, it’s malignant.” Before my diagnosis, I never thought about dying. Now, my mortality is never completely absent from my mind. There are moments, of course, when I forget the trauma. Then the fear comes rushing back as if I’ll jinx myself if I get too complacent and stop worrying.

I do feel more comfortable in my post-surgical body with my tiny breasts. When I look at myself in the mirror, my shirt hanging straight down in the front, I feel more like myself than I ever have. But I have lost some of the masculine energy of confidence that I used to have pre-cancer. I feel fragile. I cry a lot. I hope I will get back to being me in time.

Going through breast cancer as a gender-nonconforming person made me realise how little progress we’ve made for gender equity, at least in Texas. I don’t know if my experience would have been better in a different state. But I know it was hard here in a way it shouldn’t be, and that made dealing with the disease much tougher for me.

I feel like I should end this on a hopeful note and throw out some cliché about what doesn’t kill us makes us stronger. But I don’t actually believe that. The truth is: Cancer is a horrible disease. I am not a better person for having cancer. I long for the days when I didn’t jolt awake at 2 a.m. and sob. I wish all health care workers who treated me made me feel accepted for who I am. Yet, I am thankful, of course, that they got rid of the cancer.

One lasting gift cancer gave me, however, is that I realise with conviction that life is short. After my daily radiation treatments concluded, I took my girlfriend away on a much-needed vacation to San Antonio’s Riverwalk. I have learned the hard way that I should not wait.

Gina M. Masullo (Ph.D., Syracuse University) is Associate Director of the Center for Media Engagement and an Associate Professor in the School of Journalism and Media, both at The University of Texas at Austin. She is the author of ”Online Incivility and Public Debate: Nasty Talk” and ”The New Town Hall: Why We Engage Personally with Politicians” and co-editor of ”Scandal in a Digital Age.” She spent 20 years as a newspaper journalist before becoming a professor. She was diagnosed with Stage 1c breast cancer in her right breast on February 17, 2023, and she had surgery to remove the tumor on March 28, 2023. She is the mother of two adult children, Ian and Chloe Chen, and two dogs, Phoebe and Finn. She and her girlfriend, Joy Jenkins, live in Austin, Texas.