More than half of men diagnosed with the disease found the side-effects to be worse than expected and almost 50% were unprepared for the emotional toll of prostate cancer.
The research, based on the experience of more than 200 men with the disease, was carried out by the Irish Cancer Society ahead of the release of its new Prostate Cancer Patient Charter next month.
The society said the results of the survey were upsetting but not unexpected as, anecdotally, it already knew men’s prostate cancer journey was not altogether positive.
“We wanted to establish sound data that could be analysed, interpreted and used to address the needs of men and the partners who are living with prostate cancer,” said the society’s chief executive, John McCormack.
He said the charter would set out the society’s recommendations for prostate cancer patients, from investigation right through to treatment and beyond.
“We know that the medical community is doing the best job it can with the resources available so we will be working closely with hospitals to see what services are currently available and where gaps exist,” he said.
The society said clinical changes, such as having a specialist nurse available to help men deal with side-effects, would be a positive step. The study found that one in three men did not receive such vital nursing support.
The effect of a prostate cancer diagnosis on a physical relationship was significant. Sexual relationships ended for 46% of men while a third were no longer intimate with their partners. On the positive side, however, a third said their relationship with their partner grew stronger.
Two thirds of men felt the implications of prostate cancer were not explained to them at the time of their initial GP visit and the Irish Cancer Society will be working with doctors to see how this can be improved.
Half of men received their cancer diagnosis alone but most had decided not to have anyone with them at the time. One in five were alone because they were not expecting the cancer diagnosis. Only 56% felt they were told they had prostate cancer with sensitivity.
However, the Health Service Executive said many of the patients surveyed had been treated a number of years ago and their experience would not reflect the comprehensive service now available across the country.
Director of the HSE’s National Cancer Control Programme, Dr Susan O’Reilly, said they were aiming to ensure that prostate cancer patients were provided with all the relevant information.
“Treatments have similar cancer benefits but vary in relation to side-effects and the impact on the patient. It is important that patients receive as much appropriate information as possible from their clinicians and medical teams at both the designated cancer centres and back in the community,” she said.
*National Cancer Helpline Freefone 1800 200 700.