November 2, 2022 – Mark Lichty, 73, said it took a decade to overcome anxiety, fear of death and uncertainty about the future after being diagnosed with low-grade prostate cancer in 2005.
Lichty, from East Stroudsburg, PA, channeled some of that fearful energy into the start Active Surveillance Patients International (ASPI), which he co-founded in 2017 to help men with low-risk prostate cancer manage concerns that their condition could progress from benign to life-threatening.
Many men call this state of limbo “anxious surveillance” — a basic level of apprehension that worsens while they await the results of regular blood tests, which, depending on the results, can signal the need for surgery or radiation therapy to remove a tumor that’s more aggressive has become.
Ironically, Lichty says, the same tests — which look at levels of a protein called prostate-specific antigen, or PSA — led to an “epidemic of overdiagnosis” of prostate cancer in the 1990s. This, in turn, led to overtreatment that led to erectile dysfunction, incontinence, and other problems in many patients — and now, he says, “the epidemic of anxious monitoring that can lead to unnecessary stress and even more overtreatment in these patients.” .
Psychological stress has been referred to as the “elephant in the room” for prostate cancer patients who do not need immediate treatment. For years, those concerns have been largely ignored, according to lawyers and health professionals.
But recently, the prostate cancer community has started to focus on the mental health of this group. One factor was the stress caused by COVID-19.
“The mental health crisis caused by the COVID-19 pandemic has brought this issue in prostate cancer into focus,” said Rick Davis of Tucson, AZ, who was diagnosed with the disease in 2007.
Davis is the founder of the AnCan Foundation, which runs support groups for people with prostate cancer – the most commonly diagnosed cancer in men. According to that American Cancer Society268,000 men in the United States will find out they have prostate cancer this year, about 10,000 more than in 2021. An estimated 1 in 8 men will be diagnosed with the disease in their lifetime, the group says.
For Davis, these numbers indicate an overwhelming need for more of the services his foundation offers.
“We tried to program something, but we didn’t take the bull by the horns,” he says. “We really saw that it was the elephant in the room and we had to identify it and do something about it.”
In 2019, AnCan and ASPI launched one of the first virtual support groups for patients with low and favorable intermediate risk prostate cancer. A 2021 survey of 168 people in the support group found that 30% reported anxiety symptoms.
This is consistent with a 2014 study by researchers in the UK who found that among almost 4,500 prostate cancer patients across the treatment spectrum, 17% of men reported depression and 27% reported anxiety before receiving treatment for the disease .
The rate of anxiety is about twice that of the general male population in the United States, says John Oliffe, PhD, founder and lead investigator at the University of British Columbia Men’s Health Research Program. Untreated anxiety can lead to other mental health problems, including depression and suicidal thoughts and behaviors, he says.
“Fear is often overlooked. The true breadth and severity of anxiety in men is unknown, which is of particular concern because undetected and untreated anxiety predicts future harmful mental health outcomes,” says Oliffe.
In September, the Prostate Cancer Foundation, the largest private funder of prostate cancer research, hosted a patient-focused conference program. On November 17th, the Prostate Cancer Impact Alliance is hosting a webinar on emotional wellbeing.
Scott Tagawa, MD, medical director of the Genitourinary Oncology Research Program at Weill Cornell Health in New York City and spokesperson for the American Society of Clinical Oncology, says, “The world is more recognizing the mental health issues in cancer than ever before. It started before the COVID-19 pandemic, but it was triggered by some issues with the pandemic.”
Tagawa says the total number of men in mental distress may be an understatement. “Men tend to be less communicative and verbal,” he says. “They hide things.”
Jim C. Hu, MD, professor of urology at Weill Cornell, said that mental health issues are now coming into play because “there is a greater focus on the patient as a whole. This goes hand in hand with patient-centred care. In patient care, there is a focus on mental health issues, particularly in cancer patients.”
Corey Lyon, DO, vice chair of clinical affairs in the Department of Family Medicine at the University of Colorado School of Medicine, says primary care physicians can play a larger role in mental health care and provide emotional support to these patients as part of an emphasis on “holistic.” Maintenance”.
“But many clinics may not necessarily do this screening because they don’t know what to do with the results,” says Lyon, chair of the American Academy of Family Physicians’ guidelines committee. “They don’t have the tools or resources when a patient has high levels of stress or greater symptoms of anxiety or depression. If they don’t know what to do with the results, they usually don’t get examined.”
Some leading clinics, such as Memorial Sloan Kettering Cancer Center in New York City, routinely screen patients with prostate cancer for mental health problems.
Andrew J. Roth, MD, a psychiatrist who has dedicated his career at the center to mental health issues and prostate cancer patients and their families, helped develop scales to measure the distress of prostate cancer patients, such as the Distress Thermometer in 1998. So did Roth helped develop the Memorial Anxiety Scale for Prostate Cancer and is working on a scale to identify depression in older cancer patients.
“Stress screening attempts to identify signals that someone is having difficulty coping with cancer that could interfere with making treatment decisions, managing treatment, improving quality of life, or that a particular patient does not have enough social support,” says Roth. “Then there is an opportunity to get them the help they need. If we don’t ask, we may not find out and may not be able to help these men in a timely manner to better manage their prostate cancer and their lives.”
But not everyone agrees on the value of such tools. Darryl Mitteldorf, a licensed clinical social worker and founder of the New York City-based masculinity Prostate Cancer Support Group, is among the skeptics.
“That [anxiety] The scale that Roth came up with and that a lot of people use is great for clinical trials,” he says. “But in a practical, everyday sense, helping people with prostate cancer get on with their lives and be as happy and hopeful as possible is somewhat irrelevant.”
Davis began promoting efforts to screen for mental stress in September through the Prostate Cancer Impact Alliance, an advocacy group within the American Urological Association. He says the vision is for medical specialties involved in the care of patients with prostate cancer – Urologists, radiation oncologists, urogenital oncologists, general practitioners and even psychiatrists – develop guidelines as a group.
“They all have to come together, and the idea is to monitor, identify and navigate people to get treatment to deal with these mental health issues and maybe even crises,” Davis says. “Right now we are not even identifying these people.