Lack of After Care Leaves Cancer Patients in 'Survivorship Abyss'

Kristin Jenkins

July 21, 2021

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 healthcare 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, in Sydney, Australia.

"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," Mazariego told Medscape Medical News.

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 healthcare providers about sexual issues, and that was particularly true for the men we spoke to," 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, 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."

Discussions Must Be Part of Standard of Care

Mazariego emphasized that for prostate cancer survivorship to improve, conversations about the psychosocial needs of patients must be normalized and made routine. Discussions about posttreatment side effects that cause functional impairments and are stressful to relationships must be embedded into the standards of care, she added. This will allow physicians to use these kinds of conversations "as a springboard for referrals to appropriate care."

"Patients of all ages will have concerns related to sex and sexual function, whether you ask about them or not," said Brad Zebrack, PhD, MSW, MPH, professor at the University of Michigan School of Social Work, in Ann Arbor, Michigan, who was approached for comment.

At the very least, physicians should be prepared to "acknowledge and describe possible effects of therapy on sex and sexual function and follow up by describing available supports for education and either individual or couples counseling," said Zebrack, who is also a member of the health behavior and outcomes research program at the Rogel Cancer Center.

Physicians can also refer patients to evidence-based resources and toolkits, he said. He noted that Will2Love offers self-help programs for cancer-related sexual problems and is "an outstanding resource."

Distress Screening Needed

Universal psychosocial distress screening is needed to identify men with prostate cancer who have high levels of distress, argues Jeff Dunn, AO, PhD, who is CEO of the Prostate Cancer Foundation of Australia (PCFA), in Sydney.

Without this, men will not seek help for their unmet needs, Dunn noted in a 2019 editorial in the European Journal of Cancer Care.

The unmet psychosocial needs of prostate cancer patients and their partners "are highly prevalent," said Dunn and co-author Suzanne K. Chambers, AO, PhD, dean of the Faculty of Health at the University of Technology Sydney. "...[F]or many prostate cancer survivors, the physical, social, psychological and relationship challenges will be long term, if not lifelong," they write.

Even in Australia, where 1 in every 6 men are expected to be diagnosed with prostate cancer by age 85, efforts to improve survivorship care have not produced the desired results, they note.

In 2019, the PCFA published a monograph in which the organization recommended routine distress screenings and referrals to evidence-based psychosocial care for prostate cancer survivors. The foundation predicted that it would be "a game-changer for every Australian man impacted by the disease."

"Yet, we still do not have a national survivorship care plan for prostate cancer survivors in Australia," Mazariego said.

Left untreated, the psychosocial effects of prostate cancer "are considerable and certainly factors that should be considered as a threat to well-being," she emphasized.

"Certainly, accumulation of unmet psychosocial needs increases risks for depression and suicide, which is true in both cancer and noncancer populations," said Zebrack.

Data back this up. One study of patients with prostate cancer found that after diagnosis, 1 in 4 experienced anxiety, and 1 in 5 experienced depression. Another study found that the risk for suicide was higher among men with prostate cancer during the first year after diagnosis than among men with other solid-organ malignancies.

More recently, a 2018 population-based Australian cohort study of men in New South Wales revealed that the risk for death by suicide was 70% higher among men who had been diagnosed with prostate cancer compared with men in the general population. This risk was higher within the first year following diagnosis and was higher in men with nonlocalized disease, those who were single, those who were living in a major city, and those who were unmarried.

Mazariego and the team reporting the survey found that men who received supportive care had a greater chance of reconciling living with functional impairments. "Receiving adequate survivorship care and trusting patient-clinician relationships appeared to be associated with greater resilience and positivity in the men's acceptance of cancer-related, long-term challenges and personal limitations," they note.

Developing Post-Cancer Identity

Survivors also appeared to have developed a post-cancer identity that was more invested in personal relationships or in taking a more active role in their own health.

"Treating my prostate cancer gave me a second chance," said one survivor. "Yeah, I'm a survivor, but more importantly, I'm a loving husband now. I know I wasn't as giving back then."

Another man admitted that before his diagnosis, he never went to the doctor. "I go much more often now," he said. "You need to check up on yourself, at least once a year. Could have caught the cancer earlier if I was doing that."

These comments appear to be borne out by data released last year by the American Cancer Society (ACS), which found that the number of number of cancer-related suicides in the United States was on the decline, as reported by Medscape Medical News.

Some of the biggest decreases occurred in men with prostate cancer, although prostate cancer was associated with 15% of cancer-related suicides. Only lung cancer was associated with more cancer-related suicides, at 18%.

A factor in the decrease in cancer-related suicides was likely to be an increase in the use of supportive care services, the ACS researchers commented.

"Although no causal relationship can be established, our findings suggest an evolving role of psycho-oncology care and palliative and hospice care given the promotion and increased utilization of these services among cancer patients during this period," they commented.

The study was funded by the Cancer Institute NSW. Mazariego and colleagues have disclosed no relevant financial relationships.

Psycho-Oncol. Published online on May 26, 2021. Abstract

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