The impact of disclosure on prostate cancer treatment

Rainbow Hearts Pride Month Instagram Story - 1

In the United States, prostate cancer is the most common cancer among men and ranks as the second leading cause of cancer-related deaths. It is estimated one in six gay and bisexual men (GBM) and one in three GBM same-sex couples will receive a diagnosis of prostate cancer over their lifetimes. However, the actual numbers are unknown due to a lack of sexual orientation and gender identity (SOGI) healthcare data collection, which has resulted in an alarming lack of understanding of the specific cancer burden and healthcare needs of sexual and gender minorities. 

Many gay and bisexual men seek out LGBTQ-friendly primary care providers due to realized and perceived concerns of discrimination. Patient-provider communication improves when patients feel safe disclosing their sexual orientation to a trusted healthcare provider. However, finding a trusted urologist is not always feasible. Studies indicate that sexual minority men are less likely to share sexual identity with tertiary care providers, such as cancer care specialists than their primary care physicians.

Stanford Cancer Institute member Marvin Langston, PhD, MPH, assistant professor in the Department of Epidemiology and Population Health, and his team conducted focus group discussions with sexual minority couples to understand how prostate cancer impacts same-sex couples.

Marvin Langston, PhD

Marvin Langston, PhD

Education and communication

Due to fear of stigma and discrimination, sexual minority couples are often hesitant to attend medical appointments together out of concerns that their cancer care may be compromised. 

Langston explains, “Some of the risks with the disclosure are perceived homophobia or that the health system may treat them differently. This reluctance stems from how the sexual and gender minority community were treated during the early days of the HIV/AIDS epidemic and into the present.”

Consequently, sexual minority partners are often missing from the cancer care journey. Langston found that partner disengagement harms the quality of life for both individuals in the relationship. When partners do not participate in clinic visits, they miss out on important information regarding treatment options, side effects, and recovery. This lack of involvement often leads to limited communication regarding the support patients need from their partners. Many gay and bisexual men reported feeling exhausted from having to educate their partners about prostate cancer on their own. These feelings were exacerbated by side effects that hindered couple intimacy. Langston found that miscommunication, coupled with a lack of prostate cancer knowledge, often forced patients to “go it alone,” leaving patients and partners with a sense of isolation and depersonalization.

Despite the inherent risks, disclosure can also provide significant benefits. "How do you involve partners in care? It is disclosure. You really can't involve your partner in care without disclosure," stated Langston.

Decisional regret

In Langston’s study, gay and bisexual male couples highlighted the importance of discussing treatment choices and the possible effects on sex and identity with a urologist from a non-heteronormative perspective. Prostate cancer treatment side effects, such as incontinence and sexual dysfunction, can significantly impact a patient's quality of life. Understanding the unique nuances within the community could help avoid treatment regret. For example, while erectile dysfunction is a side effect that concerns most men, bowel dysfunction, which can result from radiation treatment, can be more of a significant concern for some sexual minority men. Disclosure and understanding of gay and bisexual perspectives may be necessary for providers to effectively explain treatment side effects so couples can make informed treatment decisions.

“When there's enhanced patient-provider communication and education around treatment options, there are less opportunities for decisional regret. Disclosure opens up that avenue as well,” Langston elaborates.

The power of partnership 

Married or partnered cancer patients have significantly better survival rates compared to their unmarried counterparts. The benefits of long-term partnership extend throughout the cancer continuum, from early detection and treatment decision-making to post-treatment surveillance and overall survival. The causes of these differences are likely multifactorial but largely reflect social and spousal support. In heterosexual marriages, wives tend to encourage adherence to medical treatment regimens and help navigate cancer care. Moreover, emotional and social support from spouses helps patients cope with stress, which contributes to better outcomes. Married men often undergo more regular health screenings, leading to earlier diagnoses and less aggressive disease progression. 

“Marriage confers a protective effect through social support. It's currently kind of unclear if these same survival benefits are present for partnered sexual minority men versus single sexual minority men. There is a great opportunity here for more formative work and to build interventions around social support within the community.,” states Langston.

Tailoring support

Langston’s focus groups unearthed many questions regarding couple communication, social support, and feelings of isolation. He and his team are tailoring an intervention to help improve dyadic coping and communication skills with GBM couples confronting a prostate cancer diagnosis.

“We're doing a lot of formative work to understand how sexual minority couples communicate so that we can tailor this supportive intervention to be more responsive to their specific needs and communication styles,” shares Langston.

Stanford’s “We Ask Because We Care” initiative

A lack of disclosure compounded by insufficient SOGI data collection by providers can lead to a myriad of challenges in prostate cancer treatment. Gay and bisexual male couples are often hesitant to disclose their sexual orientation to urologists, which can leave partners on the periphery of care or entirely out of the treatment decision-making process. Moreover, providers often do not inquire about sexual orientation. In a nationwide study, 78% of clinicians believed patients would refuse to disclose this information, and 80% feared that asking would offend patients. However, only 10% of patients reported they would feel offended, and most believed individualized care to be highly beneficial.

"Providers I speak with, especially in prostate cancer care, often don’t see the connections with disclosure. They treat all patients the same without discriminating; therefore, they believe this information may not be important for certain specialty care. Yet, non-collection serves as a missed opportunity to truly connect with patients, may impact their support structures, and ultimately the care they receive," explains Langston.

In 2022, Stanford Medicine launched the “We Ask Because We Care” initiative. Phase two of this four-phase initiative seeks to collect SOGI data to improve healthcare for the LGBTQ+ community. It hopes to educate providers on the importance of SOGI data capture by highlighting stories from current Stanford patients who have experienced harm due to the lack of data collection and utilization. 

Bláz Bush, executive director of the Stanford Health Care LGBTQ+ Health Program, states, “We hope to bring awareness to all the ways we are currently not meeting the needs of a large population. These changes will benefit everyone, from not sending mammogram reminders to people who have already had a mastectomy to allowing patients to use the name that feels best to them when they work with our system.” 

Langston emphasizes the importance of providers asking patients about their sexual orientation and gender identity and capturing this data systematically with other important patient demographics, such as age, race, and ethnicity. Langston is hopeful that the "We Ask Because We Care" initiative will bring us a step closer to providing more inclusive care to sexual and gender minority prostate cancer patients. 

June 2024
By Sarah Pelta