“It’s a unique form of grief and I wish I had a space to talk to other queer people about it more,” shares a 38-year-old queer femme dealing with the aftermath of cancer treatment.
Struggling with a sense of alienation from her body and others, she describes it as a “constant struggle to not feel broken and disconnected from the vibrant sex cultures I once actively participated in. This contributes to both cultural and social isolation, and a feeling of not belonging in my own body.”
These compelling insights from a study in The Journal of Sex Research highlight the distinct challenges faced by lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI) individuals after cancer.
Cancer impacts more than just physical health; it can transform one’s self-perception, intimacy, and identity within the LGBTQI community. By sharing broad trends and personal stories, this study lays the groundwork for a more inclusive and supportive approach to cancer care for sexual minority groups.
People march to advocate for improved prostate cancer care for sexual minorities at the 50th Pride Parade in London, England.
The sexual wellbeing of LGBTQI individuals dealing with cancer is often overlooked.
A growing body of research indicates that sexual changes might have a more profound impact on this population.
However, participant samples remain limited. To date, most studies have focused on older cisgender gay and bisexual men with prostate cancer and lesbian and bisexual women with breast cancer.
This study aims to broaden understanding by exploring the experiences of individuals with a variety of sexual and gender identities and tumor types.
The research specifically examined LGBTQI cancer patients’ sexual wellbeing post-cancer and its connections to social support, physical concerns, psychological distress, quality of life, and coping strategies. Utilizing a mixed-methods approach, it involved 430 surveys and 103 interviews.
Participants qualified if they had been diagnosed with cancer or undergone cancer-related medical interventions. They needed to identify as LGBTQI and be at least 15 years old.
Most participants identified as cisgender (84%), with 50% identifying as women and 34% as men. An additional 15% identified as trans or non-binary, while 7% were intersex. Given that most intersex participants identified with one of these gender groups, they were not analyzed separately due to their small numbers.
Nearly three-quarters (74%) identified as lesbian or gay, followed by bisexual (19%) and queer (11%). The majority were White (85%), older adults (78%), living in Australia (72%).
Lgbtqi individuals saw significant declines in sexual wellbeing following a cancer diagnosis and treatment. These declines are associated with a lower quality of life, increased physical issues, and diminished social support.
In fact, An analysis of six aspects of sexual wellbeing revealed all worsened post-cancer. These included physical intimacy, sexual desire, enjoyment of sexual activity, ability to orgasm, communication about sexual issues, and sex life.
Cisgender men reported the largest decline, followed by cisgender women and trans individuals, although overall wellbeing did not differ by gender. Older age was also linked to greater declines for trans individuals.
While breast changes following mastectomy led to some “extreme body issues,” a 53-year-old lesbian woman found the procedure “freeing.” (Photo by Michelle Leman/Pexels)
Cancer-related physical changes, such as those affecting breasts, genitals, hormones, and bodily functions, significantly influenced sexual embodiment and desire.
These changes often resulted in discomfort, loss of sex drive, and sexual dysfunction. They frequently led to feelings of self-consciousness, community isolation, and a disconnection from LGBTQI identities. Unlike the general population, this group faced a unique challenge: post-cancer experiences often undermined their sense of being queer or trans.
After mastectomies, many cisgender women felt like “less of a woman” due to scars and breast loss. Yet, a 53-year-old cisgender lesbian woman described the procedure as “freeing,” adding she “never wanted the shape of a female body.”
Prostate cancer treatments led to erectile dysfunction, penis shrinkage, and loss of bladder control, prompting some men to avoid sex and experience suicidal thoughts. Many felt alone and unrecognized in their identity struggles. “I really don’t think people understand the personal, symbolic, and political implications for gay men when it comes to sex,” said a 50-year-old cisgender man with prostate cancer.
Cisgender women and trans participants reported more physical concerns. However, cisgender men experienced greater negative impacts on sexual wellbeing, particularly from incontinence and having a stoma-a surgically created opening in the body, typically the abdomen, allowing waste to exit.
The loss of facial hair also affected the self-image of trans men and gay men who identified as “bears,” a group that embraces a rugged, masculine aesthetic.
The most common coping methods were seeking information online (63%), consulting healthcare professionals (50%), using sex aids (49%), changing sexual practices (43%), seeking counseling (40%), and joining support groups (33%).
Consulting healthcare professionals, changing sexual practices, and using sex aids were linked to better sexual wellbeing. However, many found medical aids like vaginal dilators and treatments, such as pills and penile injections, unappealing or ineffective, feeling they “felt too clinical” or “took away spontaneity.”
Conversely, support groups, information-seeking, and counseling were linked to lower sexual wellbeing. Notably, trans individuals in support groups reported better sexual wellbeing, while cisgender participants experienced lower wellbeing.
Cisgender men relied most on various coping strategies, while trans individuals were more inclined to alter sexual practices.
Some participants found that seeing psychologists improved their sexual communication skills. Others struggled to find mental health support, particularly for issues like erectile dysfunction.
Physical changes encouraged Jake, a 30-year-old gay man with testicular cancer, to “embrace more of the sexual side of it, exploring things I haven’t done.”
Not everyone’s sexual wellbeing diminished after cancer.
Embracing different sexual practices and exploration often led to positive experiences, with a 56-year-old queer woman stating she felt “sexier after cancer than before.” Some gay men also experienced sexual growth, sharing they were encouraged to try new things and learn more about themselves.
Penetrative sex became challenging or impossible for many participants, partly due to vaginal atrophy and dryness as well as difficulty maintaining erections. Consequently, some engaged in mutual masturbation and experimented with kinks. Others emphasized the importance of physical and emotional intimacy, such as cuddling and deep conversations, as part of a new normal. They described these forms of closeness as satisfying and fulfilling.
Communication about sexual issues was also crucial. Couples who openly discussed their feelings found it easier to maintain physical intimacy, such as hugging and kissing, despite a decrease in sexual activity.
Many felt that strong relationships helped them cope with these changes without jeopardizing their bond. Yet, participants without supportive partners reported significant negative impacts on their relationships and sexual lives. They felt their partners lacked patience and kindness regarding their physical changes, adding stress to their relationships.
Although cancer affected every aspect of sexual wellbeing, the personal stories of LGBTQI individuals provide valuable insights for better support. For those interested in exploring new avenues of connection, hookup apps in the UK might offer a way to navigate social interactions and relationships.