The time has come to Increase awareness of emotional health and prostate cancer

It's more than anxious surveillance

By Howard Wolinsky

Emotional health and prostate cancer seem to be on the minds of a lot of people these days—patients and doctors alike.

Those of us in the low-risk prostate cancer world talk a lot about “anxious surveillance,” anxiety we experience at the time of urologist visits, around the time of PSAs, MRIs, and biopsies, and while we await test results.

A patient survey, the AnCan and ASPI groups did last year showed that about 30% of us have some anxiety issues—about half of this group were anxious before being diagnosed. (Of course, COVID 19 was adding to the anxiety when the survey was done) Anxiety can be enough to cause men to quit active surveillance and undergo treatment.

Distress and depression can be factors in this mix as well. Few researchers seem to look at them.

Emotional issues are not limited to active surveillance patients.

Emotional health impacts the full spectrum of prostate cancer patients. Take men who have undergone surgery or radiation and anxiously await to hear whether their margins are clear and whether their PSA numbers are low.

Some centers, such as Memorial Sloan Kettering routine screen patients with their own anxiety scale. Researchers in Italy showed that adding a psychologist to a multi-disciplinary team, and, if necessary, counseling sessions for anxious men, can make a difference in patients’ decisions to go on active surveillance.

One of the researchers told me last year: “A prostatectomy is not a solution for anxiety.” The same is true for radiation therapy or hormonal therapy.

I heard last week about plans by the American Urological Association and Prostate Cancer UK to address these issues.

Now for Prostate Cancer Awareness Month, the Prostate Cancer Foundation, the 800-pound private researcher of prostate cancer, is holding a webinar on “Physical and Mental Wellness in Prostate Cancer.”

Here are the details:

Join us for the first in a series of monthly webinars hosted by PCF President and CEO Dr. Charles J. Ryan.

During Prostate Cancer Awareness Month, PCF challenges everyone to Get Healthy. Dr. Ryan and guests will discuss key aspects of nutrition, exercise, and mental health in prostate cancer.

The event will be Sept. 20, 2022 04:30 PM in Pacific Time (US and Canada).

Sign up to join here.

Following each segment, there will be a live Q&A.

• Prostate 8: Simple lifestyle changes that work (Dr. Stacey Kenfield, UCSF)
Dr. Kenfield is Associate Professor in the Department of Urology and is the Helen Diller Family Professor of Population Science for Urologic Cancer. She is an expert on lifestyle, exercise, nutrition and their impact on prostate cancer. She'll discuss research showing how specific lifestyle factors improve outcomes after prostate cancer diagnosis, and practical ways to incorporate these changes in to your life.

• Mental Health and Prostate Cancer (Dr. Andrew Roth, Memorial Sloan Kettering Cancer Center)
Dr. Roth is an Attending Psychiatrist and is board-certified in Psychiatry, Geriatric Psychiatry, and Psychosomatic Medicine. He is focused on caring for the mental health needs of patients with prostate cancer and other genitourinary diseases. He'll provide an overview of the challenges patients commonly face, as well as strategies and resources for coping and living well during treatment and survivorship.

Here’s hoping Dr. Roth will cover AS as well as advanced prostate cancer.

Please send any questions for the speakers in advance to: webinar@pcf.org

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More on anxiety, depression, distress and prostate cancer

By Howard Wolinsky

Risa Liang Wong, MD, a hematology oncologist in the Genitourinary Oncology Program at the University of Pittsburgh, recently presented a paper on prostate cancer and emotional issues at the American Society of Clinical Oncology. Her paper focused on men undergoing ADT (androgen deprivation therapy).

Her involvement shows that all specialists dealing with patients with prostate cancer, urologists, medical oncologists, radiation oncologists, and let’s throw in primary care physicians, who offer a lot of psychological support, ought to keep in mind and address the emotional impact of their patients’ diagnosis with prostate cancer.

I interviewed Wong about emotional health and prostate cancer across the PCa spectrum.

(Risa Liang Wong, MD)

The Anxious Surveillor: How are depression, distress, and anxiety different?

Dr. Risa Liang Wong: “Distress” is a broader term that can include symptoms of depression and anxiety, but is more of a catch-all word for anything that is bothering the patient, particularly on a psychological, social, or spiritual level (though “distress” can also encompass physical symptoms as well). The National Comprehensive Cancer Network (NCCN) defines the term “distress” in the context of cancer in a way that I like.

To quote their definition:

“Distress is a multifactorial unpleasant experience of a psychological (ie, cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with one’s ability to cope effectively with cancer, its physical symptoms, and its treatment. Distress extends along a continuum, ranging from common normal feelings of vulnerability, sadness, and fears to problems that can become disabling, such as depression, anxiety, panic, social isolation, and existential and spiritual crisis.” (Source: https://www.nccn.org/professionals/physician_gls/pdf/distress.pdf)

With regards to “depression,” the DSM-V (Source: Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR); March 2022) defines a set of nine depressive symptoms, including depressed mood, markedly diminished interest/pleasure in most or all activities (known as “anhedonia”), significant changes in weight or appetite, fatigue or loss of energy, feelings of worthlessness or guilt, and so on.

There are official criteria that need to be met for someone to be diagnosed with “major depressive disorder,” but this can often be difficult to assess in the context of a diagnosis of serious medical illness such as cancer since some of the symptoms could be considered an “appropriate” response to that stressor. Therefore, when talking about depression in patients with cancer, we are usually referring to the presence of depressive symptoms - which will typically include either depressed mood or anhedonia (or both), and some of the other seven symptoms to varying degrees (depending on the person).

With regards to “anxiety,” the same comments apply regarding how it can be difficult to diagnose an official “anxiety disorder” in patients with cancer and how we usually use the term “anxiety” to refer to symptoms of anxiety in this context, which can include: excessive anxiety and worry that is difficult to control, restlessness/feeling keyed up or on edge, difficulty concentrating or mind going blank, muscle tension, sleep disturbances, and so on.

Is there any difference between how they impact men with low-risk vs. high-risk prostate cancer?

I have not come across any research suggesting that, for example, men with higher risk localized prostate cancer experience more depression, anxiety, or distress than men with lower risk localized prostate cancer. If you are aware of any such research, please let me know. My suspicion is that a diagnosis of prostate cancer is always upsetting, and may cause significant levels of distress regardless of whether considered lower or high risk.

In the case of AS, can these conditions drive patients to quit AS?

With the caveat that I do not see many patients on active surveillance as a medical oncologist (as these patients are primarily managed by urologists), yes, certainly, patients can (and do) end up choosing treatment over active surveillance if they are experiencing too much anxiety over the surveillance approach.

Are these patients routinely screened for AS, depression, and distress?

Many prominent cancer organizations such as the NCCN, American Society of Clinical Oncology (ASCO), and American College of Surgeons Commission on Cancer (ACS CoC) do recommend routine screening for distress in patients with cancer.

However, the implementation of such screening in clinical practice is far from perfect.

Some practices may not screen patients at all; others may screen patients but not do much with the results of screening; others may screen at only one time point (for example, when the patient first establishes care) but not longitudinally, which can lead to “false positives” (as patients typically have a lot of distress as they are first establishing care and learning about their diagnosis) and then miss patients experiencing distress at later time points in their cancer trajectory.

How should these conditions be treated? Meds, exercise, meditation, something else?

It’s difficult to prescribe a one-size-fits-all approach to addressing distress in men with prostate cancer, because, in my experience, not only can the source and nature of the distress vary widely in men with prostate cancer, but also men differ widely in what they feel works best for them in mitigating distress and what kinds of activities they are willing to participate in.

Certainly, some men who meet clinical criteria for depressive or anxiety disorders benefit from antidepressant or anxiolytic medications. Some may find it helpful to be connected to other patients in similar situations (through support groups or peer matching); others find talk therapy or counseling helpful; others prefer to stay physically active with exercise, and “deal with it on their own” otherwise. It really depends on the patient. Ideally, men with prostate cancer experiencing distress should be able to have a conversation with someone in the healthcare setting who would help assess their needs and give tailored suggestions of helpful interventions to try.

Is there much medical literature on this?

There is a fair amount of medical literature on the prevalence of depression and anxiety in men with prostate cancer, but not as much on the best way to address it.

Do urologists, medical oncologists, radiation oncologists, and primary care doctors do much with this? Is there a need for more research?

I would say this is definitely an area of unmet need both clinically and in the research literature. For better or for worse, many men are not that vocal about the distress they are experiencing, and so their doctors may not be aware of it. Most of us are focused on other things during visits as well, and may not actively ask about distress. Even if we are made aware of distress that the patient is experiencing, we may or may not know the best way to help, or the options we suggest may not be appealing to patients. I think more research is definitely needed on how we can best support men with prostate cancer through their experience.

What has your research found?

So far, my research has found that the use of traditional supportive care services (for example, support groups, counseling, palliative care, psychiatry, or spiritual health) is low in men with prostate cancer, and many men decline referrals to such services even when offered as the result of a positive screen for depression or anxiety. I think we need to do more research on why some men may not find these services appealing or helpful even when they are experiencing distress, and if there is something we can do differently to help these men.

My research has also highlighted that men with prostate cancer tend to experience high levels of distress when starting testosterone suppression with androgen deprivation therapy (ADT) and tend to feel unsupported during this time.

My upcoming research will focus on better understanding the experience of men starting ADT and how we can support them through that often difficult time period.

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Please join AnCan’s Virtual Support Group for Patients on Active Surveillance for a program, “Prostate Cancer Biopsies...The Great Debate,” on whether transrectal biopsies or transperineal biopsies are better for patients.

The program will be 8-9:30 p.m. Eastern on August 29. Register here: https://register.gotowebinar.com/register/1375984251183869452

Please join us.

(Note: In earlier publicity, I used abbreviated links with confusing O vs. 0. So click on the link above. Let me know if you have a problem.)

Deborah Kaye, MD, Assistant Professor Duke UniversityDivision of Urology and Duke Clinical Research Institute Margolis Policy Center, will argue for transrectal biopsies.

Arvin George, MD, a urologic surgeon specializing in the diagnosis and management of genitourinary cancers at the University of Michigan Health, will argue for transperineal procedures.

Co-sponsors include ASPI, Prostate Cancer Support Canada, the Prostate Forum of Orange County, and TheActiveSurveillor.com.

Please submit questions in advance to moderator Joe Gallo at joeg@ancan.org

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Also, check out a program on genetic testing by Active Surveillance Patients International.

Here’s the scoop:

HOW AND WHEN SHOULD I DO A GENETICS TEST?

ASPI: August 27 @ 12:00 pm - 1:30 pm EDT

Men, loved ones, and families can gain valuable facts from a cancer genetic test. While the use of genetics testing for cancers is still growing, the existing state of the art for prostate and related cancers is a powerful tool for identifying men and persons at risk. This 60-minute expert presentation will feature Robert Finch, MS, a Certified Genetic Counselor, and medical ncologist Michael Glode, MD.

You will be reacquainted with prostate cancer screening biomarkers such as the PSA test and a variety of genomic tests, receive a thorough explanation of how and when to get a cancer genetics test along with genomics tests, and finally a moment for you the patient or family to ask questions.

As ASPI does not provide medical advice, this program will educate you and your family about medical details of a family history from a genetics test, which genetics tests are not useful for medical care, the pertinent genetic relationships between breast, ovarian, pancreatic, and prostate cancers and how any of these genes may affect your health.

Please join us for this positive and powerful presentation with benefits for everyone!

This presentation is sponsored by a donation from Myriad Genetics

You are invited to a Zoom meeting.
When: Aug 27, 2022 12:00 PM Eastern Time (US and Canada)

Free registration: Click Here