Overcoming ‘anxious surveillance,’ staying on active surveillance

‘Prostatectomy is not a cure for anxiety’--Dr. Bellardita

We call it “anxious surveillance” because some guys on AS can experience anxiety around the time when they are scheduled to undergo a urology exam, a PSA, biopsy, MRI, or when we wait for the results.

An AnCan survey in 2021 of 165 men on AS found that 30% of men experience anxious surveillance, often because of pressure from spouses and family. Even their doctors can be anxiety carriers.

AnCan and Active Surveillance Patients International [Disclosure I am involved with both groups] increasingly are focusing on this problem. It’s a problem so bad for some men that they leave AS for radical surgery or radiation therapy. 

Lara Bellardita, Ph.D., Psy.D, for the past decade, has been pioneering research on the psychological issues faced by men on active surveillance (AS). She is affiliated with the National Cancer Institute in Milan, where she has been working on ways to keep men experiencing anxious surveillance to adjust and stay out of the OR and the radiation suite.

She joined the NCI in Milan in 2007, where she began developing “the right questions, the right tools to investigate psychological well-being and quality of life in men on active surveillance” as Italian urologists were beginning to offer AS. 

AS started in North America in the late 1990s to avoid overdiagnosis and overtreatment of prostate cancer, resulting in risks of impotence and incontinence. The approach started to be accepted in Europe early in the new century.

I am moderating an ASPI program featuring Bellardita at 12 p.m. Eastern on Jan. 29 on this topic. Please scroll down and register here: https://aspatients.org/event/anxious-surveillance-coping-with-anxiety-and-active-surveillance

I interviewed her in fall 2021. You can get a preview here of what she’ll tell ASPI.

Can Italian men handle AS?

Belladardita said doctors in Italy were concerned that Italian men were not good AS material.

She said, “At the beginning in the medical community, that is what a lot of physicians, urologists would say. They would say something like active surveillance is doable in northern European countries because of an open mentality because they are more proactive in terms of taking care of their own health. They were saying Italian men are less likely to be open to something so counterintuitive.”

The assumptions were wrong. Like men in North America and Northern Europe, Italian men wanted to avoid the side effects of surgery and radiation if they could.

Bellardita said, “The data show that the anxiety levels were low and comparable to that in other countries.

How many men drop out of AS because of anxiety? Estimates vary. They are from about 5-10%.

Bellardita said, “It’s a low percentage of those who decide to leave the program. I used to make the phone calls to men who decided to leave the protocol and a lot of times what happened was that some family member arranged a third, fourth consultation and they ended up facing a urologist saying this is crazy. You need to go to active treatment. A lot of times the wife is in so much anxiety and not the patient himself that he needs to exit.”

So some men undergo radical surgery or radiation because their anxious surveillance is more than they can handle.

Bellardita said 40-50% drop out of AS because of clinical parameters changed, such as a progression in cancer is found. “Active treatment is suggested because it’s not safe any longer to remain on active surveillance. Those who really drop out when there is no clinical indication to do so, it’s a very low percentage.”

What is anxiety vs. fear?

Bellardita said: “The difference between fear and anxiety? Fear is what is called the basic emotion. It’s a mechanism that we’re provided with that protects our survival. It allows us to recognize danger and either fight, flight or freeze in order to escape from the danger. Fight it or avoid it. That’s something wired in our brain and in most animals, as a matter of fact. It’s a protective mechanism, adaptive. That’s the word we use in psychology. When we face danger, our response is to activate the body in order to protect ourselves. But when the danger goes away, the arousal level, the physiological activation goes back to the baseline. To a balance. And that’s healthy. 

“What happens with anxiety and with chronic anxiety and with generalized anxiety is that the perception of danger never goes away. Not the danger itself, but the perception of danger. That is what anxiety is. Fear that becomes persistent and constant. And of course, that might end up being not so adaptive any longer. “

The role of multidisciplinary teams

Multidisciplinary teams are common for women being evaluated for the treatment of breast cancer. They are not as common in assessing men with prostate cancer. Such teams include a urologist, a radiation oncologist, and possibly a nurse practitioner. The group at the Italian NCI pioneered a third component for an evaluation--a psychologist looking for possible anxiety.

Bellardita said, “As far as my own personal experience in working in the prostate cancer unit, I sat with a urologist and a radiation oncologist at the first visit with men that have been diagnosed with prostate cancer. And that’s not only for men who will have the option of active surveillance. That’s for all men. When they get diagnosed with prostate cancer, they have the opportunity to sit in on this visit. 

Are there interventions available to help keep anxious men on AS?

Bellardita said, ”Absolutely. Absolutely. I often make this joke. Prostatectomy is not a solution for anxiety. 

“There are so many interventions, so many strategies to work on anxiety. When we have encountered men who were particularly anxious about the idea of entering the active surveillance protocol, we often say, take some time to make a decision. In the meantime, you can have two or three counseling sessions with the psychologist. We can help you find your own way. Find the decision, create the decision that will allow you to face your cancer in the way that is suitable for you right now at this moment of your life.”

She feels that counseling will suffice and medications are “overtreatment.”

There are other strategies. 

Bellardita said, “Relaxation techniques, for example. I’m going to say this is something that is particularly relevant for me at this point of my work with men on active surveillance – at the beginning, we need to measure, to evaluate the psychological impact of active surveillance. Now, we need to work on promoting the quality of life and the psychological well-being of men on active surveillance, and I want to say of men with prostate cancer overall.

“So, really now we should be focusing on the idea that active surveillance can be a window of opportunity for learning to be more health-conscious as women are. To take care of their own health. Eat well, move, work on their psychological well-being. There are many interventions that can be implemented in terms of not only giving support to men who are anxious but to improve the psychological well-being of men overall.”

She said she always asks men if they do some kind of physical activity. “I make sure that they’re not running a marathon, but simply walking 30 minutes a day at a sustained pace. It’s important to address these topics because if active surveillance aims at protecting the quality of life, we should address these in a more comprehensive way. That’s something that’s very much my professional purpose right now.”