Princess Margaret Cancer Centre opened its first-ever sexual health clinic for patients experiencing sexual dysfunction from their diagnosis and treatment – a critical step towards improving cancer care across UHN, and the country.
"Sexual health is compromised by the diagnosis and treatment of virtually all cancer types, which results in significant psychosocial distress for our patients," says Dr. Andrew Matthew, Senior Psychologist, Clinical Investigator, and the head of the Sexual Health Clinic at the Princess Margaret.
According to Dr. Matthew, sexual dysfunction is as high as 90 per cent in prostate and gynecologic cancers, 70 per cent to 90 per cent in breast cancer, 30 per cent in colorectal cancer, and 20 per cent in non-breast and non-pelvic cancers.
"We learned from surveying our patients that sexual dysfunction has a significant negative impact on their quality of life post-treatment," he says. "We also learned that little was being offered in terms of treatment for sexual health concerns across cancer sites. To close this care gap, we developed a cancer-site specific sexual health clinic."
The Sexual Health Clinic aims to address physical dysfunction, but also helps patients navigate complex psychosocial issues such as relationships, body dysmorphia and internalized stigmas as part of the clinic's biopsychosocial approach to sexual health care.
The clinic is currently offering treatment to patients with prostate cancer, but is expected to expand into other specific cancer areas, such as testicular, bladder, kidney, ovarian, cervical, and head and neck, planned for 2023.
Dr. Matthew says sexual health care is not uniform. The systematic roll-out across other specific cancers will allow for more personalized care.
Lack of sexual health resources in cancer institutions
"Presenting sexual concerns can vary depending on cancer type, treatment, and by sexual orientation and ethnicity, requiring customized treatment approaches," he explains.
There is a critical lack of sexual health resources in cancer institutions, as well as discomfort and embarrassment around these conversations that has led to a gap in care, he says.
"Patients often believe their oncologist is responsible for their cancer, deeming it inappropriate to talk about their sexual dysfunction. Similarly, oncologists have their own embarrassment and discomfort talking about it as they only get limited sexual health training in medical school," he explains.
"Patients don't ask, physicians don't ask, and because of that, institutions don't offer – which is why there are very few sexual health clinics in cancer hospitals in North America," he explains.
Karen Tse, a radiation therapist (RT) at the Princess Margaret, worked with Dr. Matthew to create a process for RTs to become more comfortable talking about sexual health with their patients.
"Radiation therapists are still not fully comfortable talking about sex with patients, but now we know that there are resources for those who need it, which is much better than what it was," Karen says.
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Karen was granted the UHN CAP Fellowship in 2021, an opportunity for health professionals to improve patient care by leading a quality improvement project. She decided to help educate staff about sexual health in oncology settings, and to increase patient access to sexual health information.
"Not a lot of people understand the connection between sexual dysfunction and patients being treated for head and neck cancer, but there are many associated factors," she explains.
"For example, patients can experience weight and muscle loss, body image issues, loss of libido, erectile dysfunction, fertility problems, fatigue after treatment, and much more."
As part of her project, Karen worked with sexual health experts to train the Princess Margaret’s head and neck RTs about normalizing the conversation of sex in cancer-care settings. She also created a pamphlet to help head and neck cancer patients navigate their sexual health concerns.
"Discussing these topics are important – and patients think they're important – but if health care clinicians don't bring it up, patients won't bring it up," she says.
Karen emphasizes that, while it's commonly believed that cancer patients are older, many are young — especially those diagnosed with human papilloma virus (HPV) — a highly contagious infection that is primarily transmitted through sexual contact. Some high-risk strains of HPV can stem into oral, anal, penile, or gynecological cancers. An active infection may not cause any symptoms, enabling people to pass the virus to their partners without ever knowing they had it. In rare cases, the virus can remain dormant in the body and reoccur years — even decades — later. There is currently no way of knowing if an individual is carrying the virus until they are definitively diagnosed with pre-cancerous lesions, or cancer.
Karen says these patients tend to internalize social stigmas and suffer from feelings of helplessness and isolation.
"Imagine being diagnosed with head and neck cancer, and then also being told that you have HPV," she says. "There are feelings of stigma and taboo, perhaps ideas like promiscuity and cheating that weigh people down, and these are the things that health care staff really should do a better job addressing."
'You have to treat the whole body'
According to the Canadian Cancer Society, an estimated 75 per cent of sexually active Canadians will get HPV at some point in their life, many within their late teens and early 20s. Nine times out of ten, a healthy immune system will clear the virus from the body on its own within two years — the cases that do not clear are the ones that can lead to cellular changes, and overtime, cancer.
"We really should look at the quality of life of these patients when they finish treatment and the survivorship aspect specifically, because they are being diagnosed so much younger and they're living longer," Karen says.
The opening of the Sexual Health Clinic is crucial in its proof of concept for the rest of UHN about the importance of sexual health and survivorship with any diagnosis, Karen says.
"You have to treat the whole body and you need to realize that sexual health, relationships with others, and body image itself is still very, very important to overall quality of life," she says.
Dr. Matthew agrees that the isolation these patients face is detrimental to their well-being. While most people seek support through their friends and family when faced with stress and trauma, the stigma of sexual dysfunction often prevents patients from accessing their usual support network.
"That's why we have a responsibility as a cancer care centre, and as health care professionals, to help these individuals who are isolated in this experience," Dr. Matthew says.
"Our goal is to help patients work through the process of sexual health recovery using effective treatment approaches in a trusted, inclusive and supportive care environment."
For further information about the Sexual Health Clinic, please contact Steven Guirguis at steven.guirguis@uhnresearch.ca