Has the time come to address anxious surveillance?
Radical surgery and radiation: not cures for anxiety
By Howard Wolinsky
Anxious surveillance is what some of us experience around the time when we are scheduled to undergo a urology exam, a PSA, biopsy, MRI, or when we wait for the results from the tests.
A new European study shows there is value in screening patients for anxiety—something is rarely done in the U.S. Also, research showed a benefit to including a psychologist on a team of radiation oncologists and urologists proposing AS—to nip anxiety in the bud with counseling, not drugs.
More on that in a moment.
AnCan’s Virtual Support Group for AS and ASPI did a survey of 165 men last year that found that 30% of men who responded complained about anxiety. About half were anxious before they were diagnosed.
And remember, the survey was done in the midst of the COVID-19 pandemic.
Anxiety was everywhere. The numbers for anxious surveillance may be high. Maybe men experiencing anxious surveillance are attracted to support groups or to filling out surveys on anxiety?
I’ve seen studies on the AS dropout rates that find maybe 5% of men leave AS because of anxiety. Maybe more experience anxiety but hang in there. Some studies looking at dropout rates simply don’t mention anxiety.
But clearly, anxiety is real. The men get it on their own but their doctors and spouses/partners can be carriers since we are talking about learning to co-exist with cancer and not eradicating it.
(I am in the midst of preparing another survey on anxiety and will ask also about depression this time.)
It seems as though, increasingly, I meet men with low-risk Gleason 6 cancer on active surveillance for prostate cancer who are experiencing emotional issues that make them want to give up AS and get treated with surgery or radiation, facing the risks of impotence, incontinence, and bowel irritation. (You can add in brain fog, hot flashes, and penis reduction.)
Prostate cancer treatment doesn’t cure anxiety
Psychologist Lara Bellardita, Ph.D., Psy.D., of the National Cancer Institute in Milan, Italy, told me last year: “A radical prostatectomy is not the solution for anxiety.” Radiation therapy is not the cure for anxiety either, I would add.
Belldardita was a speaker at a meeting I moderated earlier this year for Active Surveillance Patients International: “Anxious Surveillance: Coping with Anxiety and Active Surveillance.”
Skeptical Italian doctors
She told me that Italian doctors 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.”
In fact, I will be reporting here on a new study showing how well Italian men fared on AS compared to a similar population in the Netherlands.
(Lara Bellardita, Ph.D., Psy.D)
A major difference between the Dutch and Italian populations is that in Milan patients had access to multidisciplinary teams of radiation oncologists, urologists, AND psychologists who were on the alert for 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.”
She mentioned that men usually can conquer anxiety with two or three counseling sessions. She considers anxiety drugs “overtreatment.”
(Some U.S., research showed that 25% of anxious patients on AS take anxiety meds.)
In the early days of AS in the U.S., some programs offered stress- and anxiety-reduction classes, my urologist, Brian Helfand, MD, told me. But classes fell to the wayside as AS has become more common.
Urologists assumed that everything was under control. They may be missing a silent emotional pandemic.
Rashid Sayyid, MD, of Augusta University in Georgia, 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.”
(Watch for my upcoming article on Sayyid’s research.)
Bellardita mentioned she had been working on a project on anxiety with epidemiologist Monique Roobol, who researches decision-making in urology at Erasmus Medical Center in Rotterdam, the Netherlands. The study is just out.
(Monique Roobol, PhD)
Keeping AS patients on AS
The Netherlands had achieved a more than 90% uptake of active surveillance in eligible patients with low-risk Gleason 6 cancers. Contrast that with the pitiful showing in the U.S., where after 30 years of promotion of the close monitoring strategy, we have just reached 60% uptake of AS nationally.
So 40% of American patients who can delay “active treatment” opt to go under the robotic knife or the radiation beam. And of the 60% who go on AS, many drop out within ten years, with anxiety being one of the reasons.
(I’ll be writing more on the shockingly high drop-out rate soon. Stay tuned.)
Roobol told me that the major hurdle ahead in Holland is finding ways to keep men on AS.
Bellardita, Roobol, and their colleagues just published a study comparing 823 Italian men on AS to 307 Dutch men on AS.
The subjects signed informed consent forms and filled in the Memorial Anxiety Scale for PCa (MAX-PC) at multiple times after diagnosis. The researchers studied the relationship between the level of patients’ anxiety and time spent on AS, country of origin, the interaction between country and time on AS, patients’ relationship status and education, on PCa anxiety during AS.
[Dordoni et al. BMC Urology (2022) 22:110 https://doi.org/10.1186/s12894-022-01062-z]
The researchers concluded:
--On average, Dutchmen had a higher total MAX-PC score than Italian men. However, the level of their anxiety decreased over time.
--Dutchmen, on average, had a higher score on the PCa anxiety sub-domain, which did not decrease over time. Minimal differences were observed in the sub-domains of PSA anxiety and fear of recurrence.
But the good news is that the Dutch patients over time, got used to AS and their anxiety levels were reduced.
Teamwork is the secret sauce
Bellardita told me her program was unusual in that a psychologist is part of the team.
The patient meets simultaneously with a urologist, a radiation oncologist and a psychologist) to discuss available treatment options together in one session (i.e. RP, external beam radiotherapy, brachytherapy, and AS).
Researchers said: “The multidisciplinary team shows men a unique agreement about ‘what he can do’ and navigates with the patients and his family through the different options so that the patient is proactive in the final decision of the ‘best’ strategy for himself, in that particular moment of his life. In this context, men may feel reassured that whatever treatment choice they make is supported by the multi-disciplinary team of specialists and hence experience a feeling of hope about the possibility of protecting their quality of life.”
Furthermore, men can ask for a psychological visit in case of need.
How it’s done in Rotterdam
Dutchmen eligible for AS individually meet with one or several specialists in sequence, to talk about RP, RT and AS. Men do not necessarily have to talk to all specialists before deciding on which treatment they would like to start.
Researchers said: “So while both centers are dedicated AS centers, the way PCa care is organized in Rotterdam and Milan may add to the different levels of anxiety experienced by AS patients. In the ProtecT trial, which randomized PCa patients to either undergoing RP, RT, or active monitoring (an adapted form of AS), lessons have been learned on information provision, decision-making, and the role specialists play in that process. It was found that surgeons and oncologists may inadvertently create an additional barrier to AS through their own personal preferences for treatments.
“On top of that barrier then also comes the difficulty of presenting AS as an equal option to the more traditional definitive treatment options (RP, RT]. Such hesitation may subsequently profile into the patient-physician communication and leave potential marks in the patients’ line of thought.”
Bravery and AS
Roobol observed: “In the beginning, there was not so much, let's say, taking time to talk to all these men. So, in the beginning, it was perhaps more for the brave patient and of course, for the brave urologist, because especially I think in your country, as a urologist, you had to be brave to offer this to your patients. You know all the lawsuits, the potential lawsuits, and everything that could go wrong.”
When I started on AS in 2010, only 6% of patients like me opted for AS.
I never thought about things going wrong. I bought into the research showing outcomes—longevity—was the same if you went on AS or had surgery or radiation. So why be treated?
Similar findings in the U.S.
A study of AS patients at Memorial Sloan Kettering in New York showed that, like the Dutchmen, American men on AS seemed to become accustomed to AS with a drop in anxiety levels.
I wrote a column about this in MedPage Today in 2018. I interviewed Andrew Vickers, PhD, the senior author, who presented the paper to the American Urological Association’s annual meeting. His group studied 462 patients who had filled out the same anxiety form used in the Dutch-Italian study.
Vickers said anxiety in patients on AS is a major concern of urologists. The doctors, in part, worry that their patients will opt out of AS unnecessarily.
He said his center's AS program is unusual because it routinely asks patients about their anxiety levels as well as sexual and urinary issues. If a problem is observed, the clinician will speak with the patient to address the problem 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 should pay attention: Memorial has achieved 90%-plus uptake of AS in eligible patients.
If a patient is in trouble, Vickers said, he will be guided to get psychiatric or counseling care. He said urologists reassure the patients that most men have prostate cancer and that they're being monitored closely.
Vickers said most papers on anxiety in this population indicate that anxiety is not a problem. Ignorance is bliss.
The Memorial study confirmed moderate levels of anxiety exist but also found that anxiety levels quickly decline as men become comfortable with the diagnosis.
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."
Some questionnaires pose those questions rather than asking how cancer impacts the patient's mental state.
Finding the right questions
More appropriate questions, said Vickers, include "Does prostate cancer impair your ability to plan for the future?" and "Does it result in distracting worries or thoughts that affect your mood?"
(Andrew Vickers, PhD)
The study showed that men considering AS can be informed that they may have some initial worries but they'll adjust to AS rapidly, and anxiety will likely drop within two years.
"Our conclusion is that when men are going on active surveillance, you should say something like, 'You may feel anxious. That's perfectly normal. Quite a few men feel a little bit anxious in the first year or so, but it goes away over time. Most men sort of get used to it, and they get comfortable with it. And anxiety is not really a major problem in the long term for people in active surveillance.'"
Vickers described being at an international meeting where a Dutch doctor said in his experience, some patients are too anxious to go on AS. He said such patients simply ought to undergo radical prostatectomy -- without being offered AS.
Yikes. Shared-decision making went out the window.
"I find that deeply problematic," Vickers said.
Richard Maye, an AS patient and advocate for addressing mental health issues in connection with active surveillance, has written a series of columns for TheActiveSurveillor.com about the need to address emotional issues with AS.
A former administrator of mental hospitals has advocated for urologists and oncologists to adopt screening tools for anxiety and depression that should be addressed.
Maye spells out his thinking here and in attached links:
Also, this week, the AUA told me it has formed a committee to address emotional health and prostate cancer. Likewise, I attended a support meeting for AS in Britain, where a staffer for PC UK (Prostate Cancer United Kingdom) announced he will be leading a program that will be looking at AS and emotional issues.
So hopefully, big changes is in the wind that will help patients who qualify for AS to go on and stay on AS. This could increase the uptake of AS.
This week I ran a story about a therapist/cancer survivor and how she helps patients “make peace with anxiety”:
AS clearly generates significant levels of anxiety in most participants. Some patients however, may have a propensity for a feeling of unease - in my practice we had all new patients answer questions concerning their various systems and it was simply amazing how many admitted to feelings of anxiety or nervousness in the recent past. But, what really shakes men up in the prostate cancer arena are the many falsehoods about the safety and benefits of prostate cancer detection and treatment. The deception is no more egregious than in the labelling of the G6 as a cancer when it absolutely fails to behave as cancerous both clinically and according to genetic pathways. Do no harm and tell the truth.