Survey: Many prostate cancer patients in the UK did not receive adequate information about radiotherapy-induced sexual dysfunction

New research indicates that many UK patients don't receive adequate information about treatment-induced sexual dysfunction before, during, and after radiotherapy treatment for prostate cancer. The pilot study, presented at the UK Imaging and Oncology Congress in Liverpool, found that 43% of patients who responded did not receive any information and support at all.

Presenting the work, Therapeutic Radiographer Sam Greenwood-Wilson (University of Liverpool) said:

"This is the first study in the UK to focus on sexual dysfunction information given to prostate cancer patients undergoing external beam radiotherapy. This study suggests that the level of information given to patients is poor".

Cancer Research UK lists 52,000 cases of prostate cancer each year in the UK. Around a third of these men (approximately 17,000 men) are treated with External Beam Radiotherapy – which is when the cancer is treated by x-rays produced from a machine outside the body.

The researchers worked with patient support groups affiliated with Prostate Cancer UK to identify patients who had undergone external beam radiotherapy within the previous 10 years. 56 patients, aged from 55 to over 85, fulfilled the criteria and were invited to complete online questionnaires. They were asked a variety of questions on the advice they received.

Nearly 43% of patients received no advice at all, before or after their treatment. Many of the patients were unhappy with the information they did receive.

Sam Greenwood-Wilson said:

"Many participants were unhappy with the detail of information and felt uninformed and unprepared. Findings from other studies indicate that prostate cancer patients often regard psychosocial changes to be as important as physical side effects, and these psychological effects can feedback to poorer sexual function outcomes. It's worth emphasizing that sexual dysfunction following treatment isn't just a physical problem, it creates huge emotional problems, and this survey shows that information provision regarding the psychological effects and support available is not adequate".

Patients also reported that the information which they did receive concentrated on erectile dysfunction, and tended not to mention some of the other side-effects which can follow radiotherapy treatment, such as problems with orgasm or changes to the size and shape of the penis. The 5 patients who have anal sex said that they had received no relevant information at all.

Individual patient comments show the despondency of some patients, for example:

• "I was totally let down from the very beginning as I had no information."

• We need more support, it is rather brushed under the carpet, I had to fight for all my support, it is like a taboo subject."

Sam Greenwood-Wilson continued:

"We undertook this study because we were getting personal feedback from patients that they wanted more information or referring to support services. It's a small sample size and of course the people who took part may not be representative of all radiotherapy patients who receive treatment for prostate cancer – so we need a larger study to confirm these findings, and to confirm whether they apply generally in today's NHS. Nevertheless, the findings show that there is a body of patients who feel let down by the quality of information given. We need to reassess how we inform patients, so that no-one goes through External Beam Radiotherapy for prostate cancer without being given the option to fully know the sexual and psychological implications, and that they know who to contact for specialist support".

Amy Rylance, Head of Improving Care at Prostate Cancer UK, said: "Erectile dysfunction is a common side effect of prostate cancer treatments, and can have a big impact on the physical and mental wellbeing of men and their partners.

Early support and treatment is vital, as the effects can be much better managed if they're treated earlier. However, it's important to remember that treatment at any stage can still be successful. All men should be given the opportunity to discuss any sexual issues they are having with their clinical team, and there are a range of treatments they can be offered to help.

Prostate Cancer UK's Specialist Nurses also offer a free sexual support service to help men and their partners experiencing these sorts of problems. It gives them the chance to discuss these issues in depth and get information and support on the treatments available and ways of dealing with the changes."