Life after prostate cancer diagnosis
We've teamed up with the Movember Foundation for pioneering research on health outcomes.
What is ‘Life after prostate cancer diagnosis’?
This study, funded by the Movember Foundation, aimed to find out the impact of prostate cancer on everyday life by asking the only people across the UK who really know – men who’ve been there.
This type of research is called ‘patient reported outcome measures’ or PROMs. In this case, it meant finding out directly from men how prostate cancer diagnosis and treatment had affected their physical health, mental and emotional wellbeing and even social activities.
The researchers, based at four universities across England and Northern Ireland, sent surveys to 60,000 men across the UK who were living with prostate cancer 18 months to two and a half years after their diagnosis. 35,000 men responded. They also held face to face interviews with a smaller group of men to get personal accounts of their experiences.
What were the key findings from this study?
The first set of results from the study were published in January 2019. Overall, these results found that most men, 18-42 months after a prostate cancer diagnosis – regardless of the stage of disease they were diagnosed with – can expect to have as good a health related quality of life as men in the general population.
But the study also highlighted some key issues affecting these men, and that they weren’t always receiving the support they needed. The most striking example of this was the percentage of men reporting poor, or very poor, sexual function after prostate cancer treatment.
Prostate cancer treatment affects sexual function
Overall, 81.5 per cent of men surveyed reported their ability to get or keep an erection as poor or very poor.76.6 per cent reported their ability to reach orgasm as poor or very poor, and 81 per cent reported their overall sexual function as poor or very poor.
This varied by stage of disease, treatment type, and age, for example 75 per cent of men diagnosed with localised prostate cancer reported poor or very poor sexual function, compared to 90.4 per cent of men with locally advanced disease (cancer that has spread to the tissue surrounding the prostate gland), and 96 per cent of men diagnosed with advanced prostate cancer.
Across all age groups, 45.2 per cent of men felt that their level of sexual function was a moderate to large problem, although this number decreased slightly with age.
The survey also suggests that some of these problems with sexual function are unrelated to prostate cancer treatment. 51 per cent of men on active surveillance (who therefore receive no invasive treatments) still reported poor sexual function. This suggests that other factors such as age or other medical conditions also play a part.
Men aren’t getting the level of support they need
The study clearly showed that men do not receive enough support for their sexual wellbeing, since 55 per cent of men were not offered any type of intervention to improve their sexual function after prostate cancer treatment.
Fewer than 40 per cent of the men who responded to the survey say they were offered medications and only 21 per cent were offered specialist devices to improve their erections. Only 15 per cent of men were offered access to specialist services, such as counselling or psychosexual clinics.
The study also found that younger men (those under the age of 55) were more likely to be offered support than older men. However, even within this age group 23.5 per cent were not offered medications, 48.9 per cent were not offered specialist devices and 76 per cent were not offered access to specialist services.
Of the men offered any one of these three interventions, 39 per cent reported at least one of them as being useful.
Urinary side effects were...?
Overall, men reported relatively few urinary problems 18 – 42 months after diagnosis. The survey asked men to rate their urinary function problems in the four-week period before they filled in the survey. In this time period, 45.5 per cent of men reported no overall urinary problems and 28 per cent reported only a very small problem related to urinary function. Only 2.3 per cent of men reported a big problem with dripping or leaking urine.
These results represent a snapshot in time, so in some cases, both urinary and sexual function may continue to improve with time since treatment.
What will happen with the results of this study?
The data collection for this study was extremely comprehensive, so the results can be broken down by Trust, Cancer Alliance and regional health board. The researchers will present their findings to health providers at a regional level to help them drive service improvements in their area.
The survey revealed that the biggest issue was a lack of support for men still experiencing poor levels of sexual function up to three and a half years after treatment for prostate cancer. To tackle this problem, the Movember Foundation is funding an online sexual health training programme through its global TrueNTH initiative which will be available early this year. It will provide health professionals with the expertise needed to support men following their treatment. You can read more about this on the True NTH pages of our website.
If you are concerned about prostate cancer, have been diagnosed with prostate cancer or are experiencing side effects from your treatment, our Specialist Nurses are there to support you. Please call on 0800 074 8383 or ask for a callback online. Our online guides can also help you learn new ways to manage if you’ve been affected by symptoms or side effects.