Many prostate cancer patients in the UK have not received adequate information about radiotherapy-induced sexual dysfunction
New research indicates that many UK patients do not receive adequate information about treatment-induced sexual dysfunction before, during and after treatment with radiotherapy for prostate cancer. The pilot study, presented at the British Congress of Imaging and Oncology in Liverpool, found that 43% of patients who responded received no information or support.
Introducing the work, therapeutic radiographer Sam Greenwood-Wilson (University of Liverpool) said:
“This is the first study in the UK to focus on the information about sexual dysfunction given to prostate cancer patients undergoing external beam radiation therapy. This study suggests that the level of information provided to patients is mediocre”.
Cancer Research UK lists 52,000 cases of prostate cancer each year in the UK. About a third of these men (about 17,000 men) are treated with external beam radiation therapy – that is, when the cancer is treated with X-rays produced by 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 radiation therapy in the previous 10 years. 56 patients, aged 55 to over 85, met the criteria and were asked to complete online questionnaires. They were asked various questions about the advice they received.
Nearly 43% of patients received no advice, before or after their treatment. Many patients were not satisfied with the information they received.
Sam Greenwood-Wilson said:
“Many participants were dissatisfied with the detailed information and felt ill-informed and unprepared. Findings from other studies indicate that patients with prostate cancer often consider psychosocial changes to be as important as physical side effects, and these psychological effects can affect sexual function results.It should be emphasized that sexual dysfunction after treatment is not just a physical problem, it creates huge emotional problems, and this investigation shows that the provision of information regarding the psychological effects and the support available is not adequate”.
Patients also reported that the information they received focused on erectile dysfunction and tended not to mention some of the other side effects that can follow radiation treatment, such as problems with orgasm or changes in size. and the shape of the penis. The 5 patients who have anal sex said they received no relevant information.
Individual patient comments show the discouragement of some patients, for example:
- “I was totally disappointed from the start because I had no information.”
- We need more support, it’s pretty much glossed over, I had to fight for all my support, it’s like a taboo subject.”
Sam Greenwood-Wilson continued:
“We undertook this study because we were getting personal feedback from patients who wanted more information or referral to support services. This is a small sample and of course the people who participated may not be representative of all radiation patients receiving treatment for prostate cancer – so we need a larger study to confirm these findings and to confirm whether they generally apply across the NHS to today. Nevertheless, the results show that there is a group of patients who feel disappointed with the quality of the information provided. We need to reassess the way we inform patients, so that no one goes through external beam radiation therapy for cancer of the prostate without having the opportunity to fully know the sexual and psychological implications, and that he knows where to turn for specialist support”.
Amy Rylance, Head of Care Improvement at Prostate Cancer UK, said: “Erectile dysfunction is a common side effect of prostate cancer treatments and can have a significant impact on the physical and mental well-being of men and their partners.
Early support and treatment is essential, as the effects can be much better managed if treated earlier. However, it is 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 that can be offered to help them.
The specialist nurses at Prostate Cancer UK also offer a free sexual support service to help men and their partners with these kinds of problems. It gives them the chance to discuss these issues in depth and get information and support about available treatments and ways to cope with the changes.”
British Congress of Imaging and Oncology (UKIO)