One patient sticks in Dr Penny Gosling’s mind.
The woman had tears of gratitude when Gosling, a Canberra-based GP, asked about her sex life after cancer treatment. Sex was painful but the woman’s superficial dyspareunia soon resolved with topical steroids and moisturisers.
“Can’t you just tell oncologists that they need to ask this question?” Dr Gosling says her patient remarked, six months later, when she found pleasure in sex again.
For the topic of sexual health is one seldom raised in consultations between cancer patients, who might shy away from the issue or not know how to ask, and oncologists, whose professional focus is combatting disease and who may feel ill-equipped to talk about sexual health.
“We get very caught up discussing the intricacies of treatment options and their rationale, potential physical toxicities and cancer outcomes, but neglect fundamental issues such as partner and self-intimacy due to a sheer paucity of time,” says Dr Sanjeev Kumar, a medical oncologist specialising in breast cancer at Chris O’Brien Lifehouse in Sydney.
“Our recent dependence on telehealth also doesn’t help.”
But sexual health concerns for cancer patients are as common as they are complex. Whether it’s the scars after surgery, the side effects of treatment, anxiety about recurrence, lost libido, issues with intimacy, sexual function problems or an altered sense of self, cancer can impact sexual health years after acute care.
“People have all of these unmet needs for all of those issues and many more, because we don’t have a systematic approach” to identifying patients’ sexual health concerns, says Professor Michael Jefford, a medical oncologist and director of the Australian Cancer Survivorship Centre at Peter MacCallum Cancer Centre in Melbourne.
Putting aside treatment priorities, time constraints and referral options, clinicians involved in multidisciplinary cancer care also often assume sexual health is going to be covered by somebody else.
“One of the issues with discussing sexuality is whose job is it, and who has the expertise,” Professor Jefford says. “It’s not clear whose job it is, but it’s very clear that people lack information.”
Concerns about sexual changes rank in the top four most frequently reported unmet needs for Australian cancer survivors, after fear of cancer recurrence, dealing with uncertainty, and worries about family and friends, according to a 2019 systematic review Professor Jefford co-authored.
It’s evidence that although clinicians may think sexuality mainly concerns breast cancer patients on hormonal therapies, women having surgery for gynaecological cancers, and men undergoing treatment for prostate or other urogenital cancers, sexual heath is “an issue for everybody,” Professor Jefford says.
Sexuality is also more than just having sex.
Sexual health encompasses sexual relationships, intimacy, and a person’s sexual expression – all of which can be affected by fatigue, nausea, pain and body sensitivity, fear, guilt and shame, for men, women and transgender people alike, says Professor Jane Ussher, a clinical psychologist at the Western Sydney University researching sexuality in cancer survivorship.
She says medical professionals generally have a narrow, male-dominated, heteronormative view of what sex is, which might explain why clinicians are twice as likely to talk to men about erectile dysfunction as they are to ask women about their sexuality and side effects of treatment, such as vaginal dryness and diminished libido.
Likewise in adolescents, research shows young women who have survived cancer are less likely to be asked about sexual health problems than young men.
When cancer specialists do raise sexual health matters, they tend to focus on physical symptoms or the obvious impacts of surgery and treatment on erectile function or fertility.
Rightly so, says Professor Ussher. “It’s absolutely vital that people know if the cancer treatment is going to have an impact on sexual functioning.”
But clinicians need to think far more broadly about what sex involves and acknowledge all forms of sexual intimacy beyond sexual intercourse, Professor Ussher says.
Not only can cancer and cancer treatment impact on people’s physical ability to engage in sexual practices, a cancer diagnosis can impact patients’ sense of self, desirability and gender identity. Cancer can also change how someone perceives their life, and move them to reconsider relationships, Professor Ussher explains.
“It can result in people ending relationships, starting new relationships, changing their priorities in life, and that can have impact on your sexual health,” she says.
With their focus on general health and wellbeing, Dr Gosling says GPs are well-placed to cover sexual health routinely. “I think sexual health comes very squarely under the remit of every GP,” she says. “It’s a big part of patients’ lives.”
But often patients want their oncologists to coordinate various aspects of extended care, including referrals and treatment, says Professor Fran Boyle, a medical oncologist at the Mater Hospital in Sydney.
“Sometimes they’re comfortable with their GPs doing that, but often they want to run it by the person who understands the most serious thing that’s happening in their life,” Professor Boyle says.
“Thinking of yourself as a doctor who gives chemotherapy is really missing a whole lot of what patients expect from us,” she continues.
“Unless sexual health is raised by the doctor directly, and at least put on the table as a worthy subject of conversation, patients won’t generally mention it.”
It takes training
One of the biggest barriers for clinicians to discussing sexual health is a lack of training, which leads to a lack of confidence about what to say and how to say it. Oncologists might also feel they don’t have the knowledge, skills or resources to support patients with sexual health concerns.
“Oncologists worry that they need to be an expert. And I don’t think that’s true,” says Professor Jefford. “People just need to feel confident to have a conversation.”
Communication skills training can reduce perceived barriers to discussing sexuality and increase confidence, which translates into more discussions taking place that ultimately help patients understand that their concerns are valid, and not unusual or something to be embarrassed about, he says.
Professor Boyle, who leads clinical communication training courses, says conversations about sexual health and sexuality can be difficult to raise, much like discussing prognosis and end-of-life care, but begin by building of rapport and trust, and creating a comfortable atmosphere with patients.
A simple strategy she suggests is normalising patient concerns by prefacing questions with: ‘Most patients with prostate cancer have concerns about their sex life, or most people having treatment for breast cancer have concerns about how it might impact their sexuality, is that the case for you?’
“But it may take a bit of digging to get past other concerns, such as worries about chemotherapy or financial concerns,” says Professor Boyle.
Professor Ussher says it’s about giving patients – who take cues from their doctor about what’s important to discuss or not – permission to ask about sexual health matters, including intimacy and relationships, if they have concerns.
“It’s important to open the door, to give people permission to ask questions about sexuality if they want to,” then provide them with limited information in a booklet or using an online resource, says Professor Ussher, referring to the first two steps of the so-called PLISSIT model of sex therapy.
After that, if patients want more specific information or need more support, they know they can ask for it or know where to find it – if it’s important for them, says Professor Ussher.
Her research shows that most patients welcome this approach and it helps to normalise sexual changes, aids couple communication and improves sexual satisfaction, which may assist in recovery.
“People can renegotiate sex, and many people we’ve talked to actually have much better sex lives” once they and their partners understand there’s more to sex and intimacy than penis-in-vagina sex, she says.
Professor Ussher says permission to ask about sexuality can be given by any healthcare professional, including nurses and physiotherapists.
“But patients actually want to hear it from their doctor and doctors have great legitimacy in terms of saying, this is an important issue; it’s okay to ask questions about,” she says.
Dr Kumar, who says he incorporates discussions about sexual health into his clinical practice, has noticed a growing number of young breast cancer patients, typically under 40 years of age, asking questions about sexual wellbeing.
But some of their concerns relate to misinformation shared in online support groups – that it isn’t safe for cancer patients to have sexual intercourse or kiss a partner while on chemotherapy, for example. But it can be done, with precautions and protection.
“All cancer care providers, particularly oncologists and cancer care nurses, should readily take prompts from our patients, and be willing to discuss sexual wellbeing,” says Dr Kumar.
Doctors have a really important role to play in providing appropriate information from legitimate sources to dispel myths and alleviate distress, Professor Ussher says. But as much as awareness about sexual health is increasing, educators and healthcare professionals can’t be complacent because there is still quite a lot of resistance among clinicians to discussing sexual health in practice.
“There needs to be ongoing professional education,” to overcome some unchecked assumptions about sex and sexuality that persist in clinical practice, she says.
Adolescents’ sexual health concerns are commonly overlooked because they’re not seen as being sexually mature, while older, frail or ill patients are dismissed as if sex and intimacy doesn’t interest them.
Clinicians may also think discussing sexual health issues with people from different cultural and linguistic groups is disrespectful or inappropriate, that sexual health doesn’t concern single people or assume patients are heterosexual or cisgender.
And the queer community is too-often neglected since many healthcare professionals don’t feel knowledgeable about sexuality concerns of minority sexual groups, Professor Ussher says. “There’s still a long way to go.”
“We’re certainly not expecting oncologist to be sex therapists – that’s not their training or their role,” says Professor Ussher. “But it’s important for the oncologists to be that first point of call, to actually raise [sexual health] as an issue.”
To those who say few resources are available, Professor Ussher suggests taking the time to identify sexual health clinics, psychologists and physiotherapists – which are more available now with telehealth – and having resources, such as Cancer Council Australia’s information on sexuality and intimacy, on hand to give patients.
“There’s lots of information we can give to people” to address their sexual health concerns, Professor Ussher says. “So it’s not an unsolvable problem.”
But even at large cancer centres, where physiotherapists are down the hall and psychology services are in the next building, allied health and specialist services are often underutilised, Professor Jefford says.
“We know that the need is huge but these services aren’t overwhelmed, because we’re not finding the patients,” Professor Jefford says. “And we’re not finding the patients because we don’t screen.”He suggests providing patients with question prompt lists and information booklets, as a way to open up conversations, understand what people’s specific concerns are and to make the appropriate referral.
Australian research has shown that using a short sexual symptom checklist can result in more referrals to sexual health support services, in a study where over half of gynaecological cancer survivors reported sexual health difficulties and dissatisfaction on or after treatment.
“We really need to be more systematic about dealing with issues that we know are commonly reported, that people want answers for, and they want to be addressed,” Professor Jefford says.
Sexual health, he adds, needs to be embedded in follow-up care for cancer survivors because “if we don’t ask, it won’t be discussed.”
Dr Gosling suggests oncologists could raise the topic of sexual health then encourage patients to seek support from their GP, noting the patient’s concerns in a letter to prompt GPs to continue the conversation.
Not only would this benefit patients, but it would also help to raise awareness amongst GPs who might not know just how people find cancer impacts their sex lives, she says.
“There are so many competing priorities in managing cancer but I think sexual health is a really important part of people’s overall wellbeing, and it can be hard for the patients to raise,” says Dr Gosling.
“So it really is the responsibility of the treating team, whether it be oncology, GPs or both. If we all try, we’re more likely to catch those patients and make their lives better.”
Professor Boyle says with many people surviving cancer and living longer, there is a greater expectation amongst patients of a return to a more normal life after cancer treatment and that includes sex. But outside of breast and prostate cancer, oncologists “don’t know as much as we need to” about how cancer impacts patients’ sex lives, she says.
Professor Boyle encourages clinical trial investigators to include issues around sexual health in their oncology trials as part of patient-reported outcomes, in the same way breast and prostate cancer trials capture this information.
“There’s much more to learn about the impact of cancer treatment for people with other kinds of cancers.”