October is Breast Cancer Awareness Month. Yet despite annual awareness campaigns with pink lights and pink ribbons everywhere throughout the month, breast cancer remains a leading cause of cancer deaths among women and people assigned female at birth (AFAB).
Breast cancer is the most commonly diagnosed cancer in the world. Every 2 minutes someone in the U.S. is diagnosed with breast cancer.
Lesbian, queer and bisexual women and AFAB people have long been considered at higher risk for breast cancer than cis-het women due to a confluence of factors that include more substance abuse issues, tobacco use, obesity, less likelihood of pregnancy and, most dramatically, a lack of regular health care and cancer screenings.
Trans masculine people, many of whom face the same risk factors as LBQ women, have been virtually ignored in any discourse on breast cancer; trans and gender nonconforming people have historically had less access to healthcare and have faced more discrimination from the healthcare system.
The issue of healthcare and cancer screening is the most pivotal and most complicating. Recent studies have shown that LGBTQIA+ people face poverty and lack of access to medical care at rates far higher than their cis-het peers.
Breast cancer is a complex disease. There are several subtypes of breast cancer and many options for treatment. While many people may have similar diagnoses or are prescribed similar treatments, each experience is different, which makes getting appropriate medical care all the more critical.
Dr. Hilary Rosenstein is the Family Medicine Specialist and Assistant Director of the Mazzoni Health Center. Rosenstein told PGN that there are a panoply of issues facing some queer and trans people with regard to breast cancer.
“We know that most breast cancer awareness campaigns are very gendered and don’t speak to many of our trans and gender diverse patients,” Rosenstein said. “Our patients also risk facing discrimination or traumatizing experiences when they seek preventive care at many traditional health centers.”
Some risk factors for breast cancer include being a woman or AFAB person and getting older. Someone whose mother, sister or daughter or AFAB family member has or had breast cancer is at higher risk. Being overweight, especially after menopause, not being physically active, drinking alcohol, or using certain types of birth control may add to the risk.
Additionally, there may be a higher breast cancer risk for people who have used some hormone therapy, people who haven’t had children or haven’t breast-fed, and people who are older than 30 when they first give birth, are also at a slightly higher risk.
These risk factors, combined with specific concerns that many LGBTQIA+ people face when accessing healthcare, may magnify fear for some in seeking healthcare for either prophylactic protocols or treatment for a possible cancer. Rosenstein said that “This is already a sensitive topic for many people, one that causes anxiety and fear about exams and biopsies.”
Maya Davis was diagnosed with breast cancer in the midst of the pandemic last year. At 49, the Mount Airy teacher and lesbian co-parent of three young children, Davis was “absolutely terrified. Here we were in lockdown, not even thinking about things like mammograms, and I found a lump in my breast.”
Davis called her doctor, who sent her for a mammogram. “I had never had a mammogram. I know you’re supposed to get a baseline at 45 or so, but I just never thought about it. I also knew Black women are more likely to die from breast cancer, so that ratcheted up my anxiety. ”
Like many lesbian and queer women, Davis only went to the doctor when she was sick and hadn’t seen a gynecologist in years. “Suddenly, I was fearing for my life and blaming myself for not being more proactive with my health,” Davis said.
Diagnosed relatively early, with stage 2 breast cancer that had not spread to her lymph nodes, Davis had a partial mastectomy and radiation treatment. She also recently completed a short “proactive” round of chemotherapy.
“This was one of the hardest things I ever faced,” she said. “I worried about my kids and my wife even more than myself. But we all got through it.”
Riley Byrne’s experience was far different — and far from over. A gender nonconforming butch lesbian who came out as nonbinary this year, Byrne didn’t address the tugging sensation in their one breast until the nipple began to invert. “I had avoided my breasts for a long time,” said Byrne. “This was not a part of my body I was comfortable with and I was even less comfortable with the thought of strangers touching me there.”
Byrne says, “I was definitely in denial and I couldn’t bring myself to talk to anyone about it.”
It was more than a year before Byrne saw a doctor who immediately sent them for diagnostic tests. A mammogram and ultrasound were followed by a biopsy and a diagnosis — stage 3 breast cancer. Surgery revealed some lymph node involvement. Byrne chose a double mastectomy when it was discovered they also carried the breast cancer gene.
Now in chemotherapy after the surgery and subsequent radiation, Byrne says it’s essential that more gender-accommodating medical care be made available to people like them.
“How much earlier might I have gotten care and treatment if I had had a safe space for that?” asks Byrne. “I’m not placing blame — I am still trying to forgive myself for not seeking help right away. But how many other queer and trans people are going through this same thing?”
That is an issue the Mazzoni Center is determined to address. Rosenstein said, “At Mazzoni Center, we approach breast and chest cancer screenings in an inclusive and affirming manner. We talk to patients of all genders about chest cancer risks, including family history, hormone use, and make a plan together about how to best approach screening.”
Rosenstein adds, “We work hard to connect patients to outside affirming and sensitive providers for further evaluation and treatments.”
Cancer expert and out lesbian Dr. Susan Love has addressed the need for LBTQ people to be self-determinant in their own breast care. “Dr. Susan Love’s Breast Book” is a global best-seller and details what everyone with breasts needs to know for breast health and care.
The Dr. Susan Love Foundation for Breast Cancer Research has a wide range of resources with detailed information on everything from risk factors to treatment protocols to news on clinical trials. Knowing how to maintain one’s health, what signs to look for to be proactive in that self-care, and videos on breast cancer all help to demystify this cancer that impacts one in eight women and others who were assigned female at birth.
Love’s foundation website has people with various stages of breast cancer telling their stories and detailing their experiences from discovery to diagnosis to treatment, which can help alleviate some of the fears.
Byrne said they wanted to share their story with PGN to highlight how the trepidation over how they will be treated by the medical establishment inhibits seeking care. Byrne said, “When we talk about breast cancer awareness, we need to start emphasizing personal awareness. Accepting our bodies is really complicated for many of us. It certainly has been for me.”
They added, “But we have to care about ourselves enough to learn what we can and must do to protect ourselves. That’s how we save our own lives.
The names of the cancer patients in this story have been altered to protect privacy.