More help needed to stop prostate cancer survivors falling into a ‘survivorship abyss’

Research from the Daffodil Centre has revealed that many men who survive prostate cancer do not receive the right interventions or support to help deal with distressing, persistent side-effects of treatment, and are suffering in silence.  

The findings, which have been published in-line with Men’s Health Week (June 14-20), highlight the need to address gaps in how the healthcare system approaches the ongoing psychosocial needs of survivors, especially for those living with sexual dysfunction.  

Researchers conducted interviews with 37 men who had survived prostate cancer for 15-plus years, sampled from the New South Wales Prostate Cancer Care and Outcomes Study.

Most men who participated in this new study, titled Avoiding the survivorship abyss: Qualitative insights from 15-year prostate cancer survivors, reported having persistent side‐effects like incontinence and sexual dysfunction, and that they did not have the opportunity, or could not recall an opportunity, to discuss and manage these distressing issues with an appropriate healthcare professional.

Lead researcher Dr Carolyn Mazariego said the study shows that men continue to deal with prostate cancer-related challenges well into their survivorship.

“The good news is that more men than ever before are surviving prostate cancer – however, this means that as our population grows and ages, an increasing number of men are facing these survivorship challenges,” she said.

“We know that there is a well-documented cycle of silence between patients and healthcare providers about sexual issues, and that was particularly true for the men we spoke to.

“Many men are not receiving adequate post treatment follow-up care, and as a result are utilising a variety of coping strategies.”

The most common coping strategies identified in the study were: engaging in distracting activities or hobbies and moving forward with life, considering that ‘it could be worse’, making light of the situation and using humour, and ‘just dealing with it’ in a stereotypically stoic manner. 

The findings are particularly important given the known link between prostate cancer and an increased risk of suicide.

A 2018 Cancer Council NSW study looked at rates of suicide among prostate cancer survivors over a period of ten years. It found that men in NSW who had prostate cancer were at a 70% increased risk of suicide compared to the state’s general male population.

Dr Mazariego said that as the number of prostate cancer survivors continues to grow, the need for clear survivorship care guidelines is increasingly vital.

“Without a coordinated approach to survivorship care, more men will become lost in the prostate cancer ‘survivorship abyss’,” she said.

In Australia, one in six men will be diagnosed with prostate cancer by the age of 85. During Men’s Health Week, Cancer Council is calling on sporting teams and individuals around NSW to help raise funds for men’s cancers by joining a Balls for Balls challenge – whether that’s a soccer juggling challenge or seeing how many cricket bat taps you can do in a row. Visit the Balls for Balls website for more information or to register your event.

If you or someone you know has been impacted by cancer and needs support, call Cancer Council’s free, confidential Information and Support line on 13 11 20.