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Let's Talk About Sex: Addressing Overlooked Side Effects in Oncology Care

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I’m sitting alone eating breakfast in the conference hotel, unwittingly listening in on the conversation of the two delegates sitting at the next table.

They’re running through the day’s programme over pastries and coffee, picking out the talks they want to attend.

Suddenly, one of them says aloud: “Managing the Sexual Side Effects of Cancer Treatment.”

He puffs out his cheeks, sighs and pauses. “I know I should care about this stuff. The trouble is … I just don’t.” His colleague hums in agreement, and they move on.

It’s a common sentiment in radiation oncology – sex isn’t something we talk about. We’re oncologists, we’re radiation therapists, we’re good at treating cancer, so let’s leave the sex to the experts.

The trouble is our patients don’t usually get to see the experts.

In a survey of uro-oncologists who treated prostate cancer, just one in ten said that management of sexual side effects was primarily their role. The majority said it was the responsibility of andrologists and specialist staff in dysfunction clinics1.

Yet, despite nearly all respondents to the survey (92%) saying that they had access to specialist sexual dysfunction clinics, only a minority referred their patients on. Around 32% of clinicians said they ‘always/usually’ referred patients with localised disease, and this figure fell to 14% for locally advanced disease, and 8% for metastatic disease1.

If patients are not referred, they are left in a vacuum, not knowing where to turn to get help. Often they won’t have been informed about what lies ahead, and the profound change to their sex lives that the treatment causes comes as a complete shock. For prostate cancer patients, the side effects can include complete erectile dysfunction, penis shrinkage, dry ejaculation, arousal incontinence, pain during anal sex and loss of orgasm.

Unmet sexual needs are greater among oncology patients than among those managed through other treatment pathways, such as urology, where staff are less fazed by such discussions.

In a population-based study, Downing et al. found large discrepancies in the numbers of prostate cancer patients who were offered post-treatment interventions for erectile dysfunction2. Help was offered to 80·9% of men whose primary treatment had been surgery but just 34·5% of men who had undergone external beam radiotherapy, and 18·8% of men who had androgen deprivation therapy as their primary therapy.

These findings were echoed more recently in research that showed that prostate cancer patients whose disease management involved radiotherapy and/or hormone therapy were significantly less likely to have discussed sexual problems with a healthcare professional than were those managed through surgery (43.3% vs. 80.1%, p<0.001)3. Those radio- or hormone therapy patients who were fortunate enough to discuss it were also significantly less likely to be referred for specialist sexual support than those who had undergone surgery (26.6% vs. 49.1%, p<0.001).

And the problem is far more widespread than urological and gynaecological cancers.

Sexual side effects are common among patients with haematological malignancies, head-and-neck tumours, lung cancer and sarcomas. Systemic treatments that include aromatase inhibitors for breast cancer and chemotherapy for anal cancer have severe sexual morbidity4. Recently, the sexual health assessment in women with lung cancer (SHAWL) study reported that 77% of these women experienced ‘moderate’ to ‘severe’ sexual dysfunction5. In terms of the other cancers, it is not difficult to imagine that the loss of a limb, salivary glands or respiratory function has a lasting impact on a person’s sexuality.

Often, sexual side effects are dismissed or downplayed as unimportant and peripheral. However, most prostate cancer patients report that it is one of their greatest concerns following treatment6.

The physical and psychological health benefits of sexual activity compared with inactivity are well documented. Mental and physical health benefits include lower levels of depression, better cardiovascular health, better quality of sleep and higher relationship satisfaction7,8. The World Health Organization states that health systems should give adults with chronic diseases access to treatment for their sexual and reproductive health concerns.

We should accept that sexual side-effects of our treatments are just as important as any other. We wouldn’t hesitate to acknowledge a skin reaction, send a head-and-neck patient for dietician support, or request a cystoscopy for urinary tract issues.

So, let’s start the conversation and address one of the most common side effects of cancer treatment. We may not be the experts, we may not have all the answers, but we can signpost and advise on where people can go to get help.

It's time for oncology to start caring about sex as an integral component of holistic cancer care.

​

William Kinnaird

Consultant therapeutic radiographer

University College London

University College London Hospitals

London, UK

 

Reference

  1. Kinnaird W, Kirby MG, Mitra A, Davda R, Jenkins V, Payne H. The management of sexual dysfunction resulting from radiotherapy and androgen deprivation therapy to treat prostate cancer: A comparison of uro-oncology practice according to disease stage. International Journal of Clinical Practice 2020;75(4):e13873
  2. Downing A, Wright P, Hounsome L, et al. Quality of life in men living with advanced and localised prostate cancer in the UK: a population-based study. Lancet Oncol 2019;20:436–447
  3. Kinnaird W, Kirby M, Schartau P, Jenkins V, Allen S, Payne P. Prostate Cancer Patients’ Experience of Sexual Dysfunction and Support According to Treatment Pathway, The Journal of Sexual Medicine 2023;20(4):iv13
  4. Leslie R. Schover, Marleen van der Kaaij, Eleonora van Dorst, Carien Creutzberg, Eric Huyghe, Cecilie E. Kiserud, Sexual dysfunction and infertility as late effects of cancer treatment, European Journal of Cancer Supplements 2014;12(1):41-53
  5. Florez N, Kiel L, Meza K, et al. Sexual dysfunction in women with lung cancer: Updates from the SHAWL study. Journal of Clinical Oncology 2023;(41)16:s9071
  6. Kinnaird W, Kirby M, Schartau P, Jenkins V, Allen S, Payne P. Older men's experience of sexual dysfunction associated with prostate cancer. Radiotherapy and Oncology 2023;182(1):S848-S849M
  7. Mitchell KR, Mercer CH, Ploubidis GB, et al. Sexual function in Britain: findings from the third National Survey of Sexual Attitudes and Lifestyles (Natsal-3). Lancet 2013;(382)29
  8. Moreira ED, Glasser DB, Nicolosi A, Duarte FG, Gingell C. Sexual problems and help-seeking behaviour in adults in the United Kingdom and continental Europe. BJU Int 2008;(101)8:1005-11