Gender identity, intimacy goal discussions can mitigate cancer survivorship challenges

Effective counseling for people with cancer about sexual and reproductive health must account for the individual’s personal story, gender identity and long-term goals of care, according to a speaker.

More inclusive definitions of gender within the context of cancer care — particularly regarding the term “women’s health” — also are essential, noted Cecile Ferrando, MD, MPH, professor of obstetrics and gynecology and reproductive sciences at University of California, San Diego.

“For the first half of this talk, I’m going to refer a lot to the term ‘women’ or ‘woman,’ and I’ll let you— as audience members — decide for now what you picture when I say that word,” Ferrando said during a keynote address at National Comprehensive Cancer Network’s policy summit on sexual and reproductive health. “Then I will give you my thoughts on gender identity and why I think we should think about this a little bit differently.”

Mitigating survivorship challenges

Ferrando emphasized the importance of mitigating survivorship challenges by having open, extensive conversations about goals of care prior to starting treatment.

“Patients are offered combinations or sequences of chemotherapy, surgery or medical therapy, and — as we all know — this can really affect quality of life,” she said. “There are so many sequalae that affect the function of the pelvic organs, and these can lead to quality-of-life symptoms and affect a patient’s sense of self.”

She illustrated this point by sharing a personal story about her younger brother, who died in 2005 after undergoing treatment for Hodgkin lymphoma.

“He didn’t actually die of lymphoma. He died of the consequences of being treated for lymphoma. He had significant graft-versus-host disease sequelae,” she said. “As a consequence of being immunocompromised, he got very sick. I was in medical school at the time, and I remember asking my mother, ‘Did we know it was going to be this bad after treatment? Is that something we talked about?’”

A comprehensive conversation about goals of care might have better prepared her family for the pulmonary fibrosis and subsequent respiratory problems her brother experienced from treatment, Ferrando said.

“[Although] that’s not specific to women’s health, these are the things I hear from women ... after they’ve been treated for cancer,” she said. “There tends to be a focus on survival — that if you survive, or when you survive, we can address this later. We sometimes assume that our patients don’t want to know what to expect in terms of survivorship.”

In her practice as a urogynecologist, Ferrando sees patients who have undergone radiation present with vaginal scarring, contracture, intimacy problems or sexual dysfunction.

“When we talked to them about how they had been educated prior to radiation therapy, many of them had no idea that this was a possible consequence of radiation,” Ferrando said. “A lot of women I’ve seen have wished that these issues had been addressed previously.”

Avoiding assumptions

When talking with patients prior to cancer treatment, it is essential to consider the individual, Ferrando said. This includes their gender identity and their priorities in terms of sexual function.

“A lot of what you should be telling patients really depends on who the patient is,” she said. “I truly believe we don’t spend enough time finding out who our patients are. We put them in diagnoses, and we make a lot of assumptions about what they will want to know and what they care about. That’s especially true when it comes to sexual health.”

Ferrando described a case of pelvic organ prolapse she handled for a woman in her mid-70s. A medical student gave a presentation about the case and, although the presentation was otherwise comprehensive, the student unintentionally made assumptions about the patient’s sexuality based on her age.

“The student said, ‘The patient doesn’t desire sexual activity,’ and I asked her whether she meant the patient wasn’t currently sexually active or whether she didn’t want it,” Ferrando said. “She said, ‘Well, she’s not sexually active, and she’s in her mid-70s.’ This was an age assumption.”

Similar assumptions about gender are common, Ferrando said, especially in terms of what is defined as “women’s health.”

Nearly 1% of adults in the United States identify as transgender or gender diverse — a percentage that exceeds the prevalence of type 1 diabetes.

“At the end of the day, what we really mean by ‘women’s health’ is care for people who have pelvic organs,” she said. “What we don’t understand is that we are actually marginalizing men by categorizing it as ‘women’ health.’ There are men out there with female pelvic organs.”

Ferrando advocated an intersectional approach to understanding patients, emphasizing that gender is one part of an individual’s complex, multifaceted identity.

This type of approach is not restricted to transgender patients and should not be solely focused on issues like honoring a patient’s pronouns, Ferrando said.

“Asking patients about how they’d like to be referred to is immensely important, but these are ‘check box’ solutions,” she said. “It’s a start, but it’s barely scratching the surface of the important things we’re doing.”

Understanding that a transgender man is a man and a transgender woman is a woman is an important first step in knowing how to manage patient discussions, Ferrando said.

“If you can get your mind wrapped around that and tell your brain it’s OK to view it that way, that’s a springboard for all the other programming that comes after,” Ferrando said.

It often is helpful to take a “pelvic organ inventory” for transgender patients to better understand the patient’s biological realities and treatment history, Ferrando said.

“It’s important to be able to speak freely about that,” she said. “It’s important to be able to say, ‘I just need to know what surgeries or hormonal management you may have had, but I’m not going to make any assumptions about that.’”

Physicians tend to “get really squirmy” broaching sexual health goals of care with patients prior to cancer treatment, Ferrando said. This may be particularly true with transgender patients because clinicians are afraid these discussions will upset patients, she said.

However, avoiding these conversations ultimately will leave patients ill prepared for what to expect during survivorship, Ferrando said.

“These conversations should be no different than what we ask our cisgender patients: What are your intentions? What organs do you use to have intimacy? What are your goals after surgery?” she said. “It’s very layered and nuanced, but it’s really, really important.”