Mark Lichty, 73, claimed that after receiving a diagnosis of low-grade prostate cancer in 2005, it took him ten years to get over his anxiety, dread of dying, and uncertainty about the future.
In order to assist men with low-risk prostate tumours in coping with the concern that their condition may progress from benign to life-threatening, Lichty, of East Stroudsburg, Pennsylvania, channelled some of this anxious energy into founding Active Surveillance Patients International (ASPI), which he co-founded in 2017.
The term “anxious surveillance” has become popular among males to describe this period of suspense while they wait for the results of routine blood tests that, depending on the results, may indicate the necessity for radiation therapy or surgery to remove an aggressive tumour.
The irony, according to Lichty, is that those same tests, which measure PSA levels, contributed to a “epidemic of overdiagnosis” of prostate cancer in the 1990s. And now, he argues, “the epidemic of worried surveillance that might result in unneeded discomfort in these patients and even more overtreatment,” which in turn led to overtreatment that caused erectile dysfunction, incontinence, and other issues for many patients.
The “elephant in the room” for patients with prostate cancer who don’t need immediate treatment is mental discomfort, according to some. Health experts and advocates agree that for many years, these worries were generally disregarded.
But recently, the prostate cancer community has started emphasising this group’s mental wellness. COVID-19’s stress has been one of the contributing factors.
According to Tucson, Arizona resident Rick Davis, who was given the diagnosis of prostate cancer in 2007, “the mental health crisis from the COVID-19 pandemic has brought this issue into spotlight in prostate cancer.”
The AnCan Foundation, which conducts support groups for those with prostate cancer, the most common cancer among men, was founded by Davis. In the United States, 268,000 men will find they have prostate cancer this year, up approximately 10,000 from 2021, according to the American Cancer Society. According to the organisation, the disease will eventually be detected in 1 in 8 men.
These numbers, in Davis’ opinion, demonstrate the urgent need for more services similar to those offered by his charity.
We have made some attempts at programming, but we haven’t confronted the problem head-on, he claims. We could clearly see that it was an issue that needed to be addressed and that it was the “elephant in the room.”
For those with low- and favourable intermediate-risk prostate cancer, AnCan and ASPI launched one of the first virtual support groups in 2019. 30% of the 168 participants in the support group who took part in a survey in 2021 reported having anxiety symptoms.
This is consistent with a 2014 study by British researchers who discovered that among roughly 4,500 prostate cancer patients receiving various treatments, 17% of males had previously had sadness and 27% had previously experienced anxiety.
According to John Oliffe, PhD, the program’s founder and principal investigator, the prevalence of anxiety is nearly twice that of the overall male population in the United States. According to him, untreated anxiety can result in despair and suicidal thoughts and actions, among other mental health issues.
“Anxiety has frequently been disregarded. The real scope and severity of men’s anxiety are unclear, which is especially worrisome considering that undiagnosed and untreated anxiety predicts future negative mental health consequences, according to Oliffe.
The Prostate Cancer Foundation, the largest private sponsor of prostate cancer research, hosted a session in September that was focused on patients. The Prostate Cancer Impact Alliance will host a webinar on emotional wellness on November 17.
The world is now more aware than ever of mental health difficulties with cancer, according to Scott Tagawa, MD, medical director of the Genitourinary Oncology Research Program at Weill Cornell Health in New York City, and spokesman for the American Society of Clinical Oncology. Before the COVID-19 pandemic, it was beginning to occur, but the pandemic’s problems brought it to light.
According to Tagawa, the true prevalence of mental illness among men may be underestimated. Men “tend to be less talkative and communicative,” he claims. They conceal stuff.
Mental health issues are now being considered, according to Jim C. Hu, MD, a professor of urology at Weill Cornell, since “a greater emphasis is being placed on the overall patient.” The patient-centered approach fits here. In terms of patient treatment, there is a focus on mental health difficulties, particularly when it comes to cancer patients.
Primary care physicians are taking on a larger role in providing psychiatric care and can provide emotional support for these patients as part of an emphasis on “whole-person care,” according to Corey Lyon, DO, vice chair for clinical affairs in the Department of Family Medicine at the University of Colorado School of Medicine.
Lyon, the leader of the guidelines committee for the American Academy of Family Physicians, notes that many clinics could not be conducting this screening because they are unsure of what to do with the data. If a patient exhibits more severe anxiety or depressive symptoms, or high levels of discomfort, they lack the necessary resources or tools. They frequently choose not to screen if they are unsure what to do with the outcomes.
Several prestigious hospitals, including Memorial Sloan Kettering Cancer Center in New York City, often check prostate cancer patients for mental health problems.
The Distress Thermometer was created in 1998 with assistance from psychiatrist Andrew J. Roth, MD, who has dedicated his professional career to the center’s work with patients with prostate cancer and their families as well as mental health difficulties. Additionally, Roth contributed to the creation of the Memorial Anxiety Scale for Prostate Cancer and is currently developing a tool to aid elderly cancer patients who are depressed.
According to Roth, “Screening for distress attempts to identify signals that someone is having difficulty coping with cancer that might interfere with decision-making regarding treatment, treatment management, quality of life improvement, or that a specific patient does not have enough social support.” “After then, there is a chance to secure the assistance they require. If we don’t inquire, we might not find out and won’t be able to assist these men in a timely manner in coping better with their prostate cancer and their lives.
But not everyone recognises the importance of these instruments. Darryl Mitteldorf, a clinical social worker with a licence and the creator of the Malecare prostate cancer support group in New York City, is one of the sceptics.
He claims that the “[anxiety] scale] that Roth developed and that many people use is great for clinical research.” However, in terms of helping people with prostate cancer move on with their lives and be as happy and positive as they can be, it’s largely unimportant.
In September, Davis started promoting a programme to screen for mental distress through the Prostate Cancer Impact Alliance, an advocacy group inside the American Urological Association. He claims that the goal is for all medical disciplines engaged in treating individuals with prostate cancer, including urologists, radiation oncologists, genitourinary oncologists, family practitioners, and even psychiatrists, to collaborate on the development of guidelines.
The goal is to monitor, identify, and guide people to therapy for these mental health disorders and possibly even emergencies, according to Davis. “They all need to come together.” “At the moment, we haven’t even named these individuals.