Although prostate cancer is the second most common cancer in men worldwide, it is not a lethal cancer: Improvements in early detection and treatment have boosted the 10-year relative survival rate to 98%.
But for many men, life after treatment is an ongoing struggle.
One of the first qualitative survey studies of long-term prostate cancer survivorship in Australia found that many survivors are living with adverse effects such as urinary incontinence and sexual dysfunction and that they continue to have heightened feelings of distress.
Many of the patients surveyed said that they had not received follow-up care and felt they had been “abandoned” by their health care professionals.
One man called it “the survivorship abyss.”
“As the prevalence of prostate cancer survivors continues to grow globally, the absence of integrated shared survivorship care models into clinical practice, such as survivorship care guidelines/plans and/or interventions, will perpetuate the sense of abandonment and the overwhelming burden of care of men lost in the PC [prostate cancer] ‘survivorship abyss,’” say the authors.
The report was published online in Psycho-Oncology.
“The good news is that more men than ever before are surviving prostate cancer,” commented lead author Carolyn G. Mazariego, PhD, a research fellow at the Daffodil Center of the Cancer Council New South Wales and the University of Sydney.
“As our population grows and ages, an increasing number of men are facing these survivorship challenges, and the need for clear survivorship care guidelines becomes increasingly vital,” Dr. Mazariego told this news organization.
Details of the survey findings
To find participants for their study, the team drew upon a cohort of 578 men who were included in the 15-year follow-up phase of the longitudinal New South Wales Prostate Cancer Care and Outcomes Study (PCOS).
The researchers interviewed 37 men for the study. The majority (88.6%) had been diagnosed with localized disease, and just over half (54%) had undergone radical prostatectomy as their primary treatment.
Some expressed regret over having had surgery. One respondent, a 15-year survivor, commented: “I really didn’t know how intrusive [surgery] was as far as losing the length of my penis and its functions. To this day, I sometimes can’t believe it’s happened. It’s devastating.”
The survey also found that most survivors viewed active treatment as the only way to avoid death.
In hindsight, some questioned whether radical treatment was necessary and whether they might have been better served by active surveillance.
Many said they were never given a chance to discuss sexual dysfunction, and others said their questions sparked an awkward, limited conversation. Many said they suffered in silence.
“We know that there is a sort of ‘cycle of silence’ between patients and health care providers about sexual issues, and that was particularly true for the men we spoke to,” Dr. Mazariego said. “This cycle of silence can stem from confusion and ambiguity as to who men should speak with regarding these ongoing issues.”
“It’s just like being part of a secret society,” said one survivor. “Like you don’t know about it until you’re in it ... I don’t think people want to know if they have it [prostate cancer] or want it known. It’s all hush hush.”
Prostate cancer patients often feel uncomfortable talking about sexual function, Dr. Mazariego pointed out. “Many men instead internalized these thoughts or concerns and just ‘got on’ with life.”
One survey participant said: “Well, you just gotta deal with it [issues relating to prostate cancer]. Just got to try and wipe out the thoughts, that’s all you can do. Suck it up and carry on.”