Shouldn't PCa docs screen patients for emotional distress?

By Howard Wolinsky

Emotional distress issues (anxiety and depression) are an often overlooked component in the care of patients with prostate cancer.

This goes across the full spectrum, from low-risk patients on Active Surveillance (AS) who are coping with anxiety to high-risk patients who undergo aggressive treatment with hormones that can trigger depression.

I am focused here on patients with very low-risk (Gleason 6 or Grade Group 1) to favorable intermediate-risk lesions (Gleason 3+4=7 or Grade Group 2), who are on Active Surveillance, the close monitoring of PCa.

In the olden days of a dozen or more years ago, my urologist, Brian Helfand, MD, said, urologists were sensitive to emotional distress. In fact, patients attended classes to try to prevent distress and nip it in the bud.

One of the top urologists in the world, an AS pioneer from Canada, once told in an interview in 2021 that only 5% of his AS patients experience (anxiety or depression.

Laurence Klotz, MD, the AS pioneer from the University of Toronto, said: “The anxiety issue seems to be a regional issue. It seems to be much more common in the U.S. than in Canada. Where are patients getting this anxiety from? They’re getting it from the doctor. And my experience is that patients with low-grade prostate cancer is extremely amenable to good information. You use a few key phrases with a patient. You say this is a pseudo-cancer. It’s a pseudo-disease. It’s part of the aging process. It never ever spreads.

“We have to monitor you to make sure you don’t have a higher-grade cancer. And the higher-grade cancer can spread, but based on what we know you have, you have zero chance of this metastasizing. You have something that really develops with age. And you can just see the anxiety seep out of people.”

That’s why I call him the prostate whisperer.

Klotz said in his 20-year+plus, 1,500-patient cohort, around 5% leave due to anxiety, and they tend to be people who have real psychological problems. “We’ve done studies looking at those patients. They tend to be socially isolated, most commonly single men. This is becoming less and less of an issue.”

Maybe that’s true in his practice Maybe he knows how to tame the anxiety beast and talk emotionally distressed patients off the ledge.

Klotz told me spouses, family members and urologists all can be anxiety carriers.

Then, he shocked me when he said: “Some of my colleagues are not averse to using fear to manipulate patients to get therapy, and I personally condemn that. But unfortunately, it’s not an uncommon type of interaction. All the doctors say,’ Yes, you could go on Active Surveillance, but you never know. You could have something worse. It might spread if you just watch it and boom! The patient is getting their prostate taken out.’” 

Again, Klotz describes a small proportion of his patients who experience severe anxiety.

But new patient surveys in the U.S. and Europe are painting a different picture.

Anxiety seems to be common. It’s natural, isn’t it, to become anxious when you are diagnosed with cancer? And the concept of Active Surveillance—co-existing with your cancer and not rushing to treatment—can be hard to accept.

For a column I wrote about anxiety in MedPage Today in 2018, I interviewed Andrew Vickers, PhD, the senior author of a paper presented to the American Urological Association’s annual meeting.

Vickers said anxiety in patients on AS ought to be a major concern of urologists.

Vickers said the AS program at Memorial Sloan Kettering Cancer Center is unusual because it routinely asks patients about their anxiety levels. If a problem is observed, the clinician will speak with the patient to address it head-on.

"The doctor may say, 'Looks like you've been very anxious about your prostate cancer. Do you want to talk about that?' This is part of routine care. It seemed wise to find out if patients were becoming unduly anxious,” Vickers told me.

U.S. programs ought to pay attention: Memorial has achieved 90%-plus uptake of AS in eligible patients.

Vickers explained that clinical anxiety is represented by such statements as "I feel jittery," "I feel butterflies in my stomach," "I can't focus on anything," and "I feel like something terrible is about to happen."

MSK’s prostate cancer program stands out as a model. Andrew Roth, MD, a psychiatrist who specialized in caring for men with prostate cancer at Memorial, developed tools to ferret out emotional distress in prostate cancer patients.

Last fall, a group of patient support organizations (AnCan Foundation, Active Surveillance Patients International, Prostate Cancer Support Canada, along with TheACtiveSurveillor.comand top prostate cancer doctors) conducted a survey of more than 450 patients on AS currently or previously. Only 8% of patients recalled ever being screened for emotional distress,

One of the dirty little secrets of AS is the high overall dropout rate: 33-50% five years after diagnosis and 66% by 10 years after diagnosis.

But more shocking: by five years after diagnosis, 25-30% of AS patients in U.S. and European studies drop out of AS even though their cancers have not been upgraded.

Why does this subgroup leave? Emotional distress is considered the culprit. These patients are tired of playing chicken with low-risk cancers and they are exhausted by the rollercoaster ride of repeated screening tests and office visits. These patients just want to get aggressive treatment over with, hang the risk for impotence and incontinence.

Why isn’t more being done to detect and treat distress in AS patients? I can’t explain it. It seems to be simple.

Psychologist Lara Bellardita, PhD, PsyD, of the National Cancer Institute in Milan, Italy, who cares for prostate cancer patients, told me in 2021: “A radical prostatectomy is not the solution for anxiety.” Likewise, I’ll add: neither is radiation therapy.

AS may continue as a treatment strategy for a long time for some of us. But some will be diagnosed eventually with more advanced cancers that require “active treatment,” especially radical prostatectomies or radiation.

Emotional distress may be ingrained in the treatment ritual for AS.

Some AS patients get anxious around the time for a visit to the urologist. They get anxious about having a PSA and waiting for the results—that’s called “PSA anxiety.” Likewise, there can be anxiety while waiting for results from mpMRI scans, biopsies, and genetic and genomic tests.

Our survey showed that 55% of respondents experienced anxiety. No wonder we call this experience “anxious surveillance.”

The survey, presented in a poster at the American Society for Clinical Oncology Genitourinary Symposium in February 2023 in San Francisco didn’t ask respondents specifically to break down the severity of their disease. However, 10% of respondents said they were anxious all the time, which I take to be severe anxiety.

The just-released EUPROMS study of 5,500 patients with all grades of prostate cancer mainly from Europe, but some North Americans and Aussies, showed that 42% overall experience emotional distress. About 13% of AS respondents reported having emotional distress.

The study found: “Active surveillance seems to be associated with higher levels of depression or anxiety than treatments such as radical prostatectomy and radiotherapy. This may be related to the long-term worry that can be brought by regular testing, and the fact that treatment decisions may still have to be made.”

Tips on controlling anxiety: https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/tips-to-help-ease-anxiety

Editorial: High anxiety and PCa

By Howard Wolinsky

Emotional distress appears to be as common as prostate cancer.

But urologists, appear generally, to have not taken emotional distress seriously.

Personally, I used to think I had experienced little anxiety in my nearly 13 years on anxious surveillance. But, in retrospect, I have downplayed. There were times that I buried anxiety.

In June 2010, I had an ambiguous biopsy. It revealed no cancer, but it did show signs of what was then thought to be a precursor of prostate cancer (HG-PIN). Dr. Jonathan Epstein, the uropathology guru from Johns Hopkins, who has seen slides from 156,000 patients since then, suggested I have a follow-up in six months. The follow-up revealed a single core of Gleason 6.

It was the only cancerous core—less than 1 millimeter— seen in six biopsies. I was having a bad prostate day that would change my life as I was eventually diagnosed and I had to fend off a urologist who wanted to “cure” my cancer with unnecessary surgery with potentially life-altering side effects.

I spent six months in limbo, the grey zone of a rising PSA (still under 4) but no cancer diagnosis. In retrospect, those were the hardest six months I’ve had in this nearly 13-year “journey,” as cancer patients like to call it.

I had bouts of anxiety, which I tried to dismiss. But the anxiety wasn’t necessarily my enemy. It drove me to research the subject and to find a urologist who was pioneering Active Surveillance, close monitoring of low-risk to favorable intermediate-risk prostate cancer.

I experienced high anxiety when a urologist called me on a Friday night to say I had “CANCER!” and should come to his office the following Tuesday—without explaining I had a single core with a tiny amount of low-risk Gleason 6. “I can cure it next Tuesday in my OR,” he told me with a straight face. I asked about AS. “I don’t support that modality,” he said, caught a bit off-guard.

After that, I got a second opinion in which I was shown research showing me how safe AS is for me.

Small doses of anxiety can be like that old Mary Poppins (Julie Andrews) song:

“Just a spoonful of sugar helps the medicine go down
In a most delightful way.”

(Fun factoid: The Sherman brothers—the most prolific songwriters in movie history== were thinking of polio vaccine delivered on sugar cubes when they scribed that song.)

A small dose of anxiety probably helps us get through the day, MSK psychiatrist Roth told me. He said anxiety got him through medical school.

But a large dose can be paralyzing and can team up with depression, a dark and potentially dangerous cloud.

Based on recent surveys and lots of discussions with fellow patients, my anecdotal conclusion is that emotional distress is far more common than patients and doctors admit. And little is being done about it.

Urologists may be well-meaning about this problem. But some seem to be almost casual, relying on their observations rather than screening their patients for distress.

I recently asked a top urologist, who shall remain nameless, if he routinely screens for emotional distress,

“Good question,” he said. “Yes, we screen patients for emotional distress—only by their facial expressions and how they sound in the meeting.”

That statement blew me away.

He added: “I’ve had people become tearful. I’ve had people seem lost or unable to interpret what I was saying. That happened to me yesterday, in fact.”

He said he recommends such patients have additional sessions to have treatments explained or to call a family session.

He also sends these patients to support groups, which our survey showed is a major way patients cope with emotional distress, along with exercise, meditation, and (rarely) medication.

This doctor said: “The problem with support groups is they’re sometimes led by really angry people who have bad side effects from treatment, and it sometimes scares patients away from active treatment. I will sometimes pick my favorite group leader or a person who has already been through it as a buddy support system versus a regular support group.”

I asked Christian Nelson, PhD, a clinical psychologist specializing in caring for prostate cancer patients at MSK, about whether this “eyeball method” of diagnosing emotional distress is good enough.

“No, it's not good enough. And this urologist may be very good. But we actually know from the research that although oncologists and other doctors dealing with cancer are well-intentioned, they're probably not really good at identifying distress. And that's why the screening guidelines have come out for cancer patients in general.”

Some, maybe many, urologists may be casual in their management of anxiety, if they notice it all.

In recent years, I have been seen in an academic urological practice for prostate cancer and a community-based private urological practice for a kidney stone (the “little bastard” as I call him).

These doctors routinely have me to fill out comprehensive surveys asking about how I fare in daily activities, how my sexual and urinary functions are, and also about my mood and emotional health in great detail. They ask about everything except the state capitals and the rise and fall of the Roman Empire.

Leading groups, including the American Society of Clinical Oncology, the National Comprehensive Cancer Network, the American Cancer Society, and the American College of Surgeons, have guidelines recommending that all cancer patients be screened.

The American Urological Association and the American Society for Therapeutic Radiation (ASTRO) don’t as I reported in WebMD and Medscape Medical News.

A silent emotional pandemic is being ignored,

Rashid Sayyid, MD, of Princess Margaret Cancer Center in Toronto, who has been researching the AS dropout rate, told me: “I can say that it is rare that such questionnaires/validated surveys are administered in clinical practice.”

Some patient advocates, including Rick Davis, a survivor of advanced prostate cancer and founder of AnCan Foundation, and Jim Schraidt, another prostate cancer survivor serving as AnCan’s liaison to AUA, have been trying to change this situation by persuading groups such as AUA and ASTRO adopt guidelines on screening for anxiety and depression.

Davis said: “In repeated written correspondence and verbal exchanges, AUA has officially indicated there is insufficient evidence to warrant issuing mental health guidelines for genitourinary cancer patients.

“I have told them repeatedly there is ample evidence and provided them with references, for example, that the suicide rate amongst men with prostate cancer is 20% higher than the norm.”

AUA wouldn’t comment on this directly.

But there are signs AUA’s position may be softening.

An AUA spokeswoman told me: “The AUA agrees that the emotional well-being of prostate cancer patients is of paramount importance. To that end, this is a topic on the upcoming Guideline Strategic Planning meeting in April. I believe we will be able to have a more substantive conversation with you on this issue after that

meeting.”

So stay tuned.