I'll never forget that phone call in December 2010. The doctor's name flashed on caller ID. I knew the verdict was in on my prostate biopsy.
I held my breath as the urologist told me I had cancer.
I had done some homework but nothing prepared me for that call on a Friday evening.
There's no way around it. I was confronting the Big C.
The call triggered many questions -- and a twinge of anxiety. What was going to become of me? Could the tumor be treated? Should it be treated? Was my will in order?
I had all weekend to contemplate the pathologist's report. I fretted a lot. Waiting for that office visit was excruciating.
I saw the urologist early the following week. He said the cancer could be cured with a prostatectomy. He had a slot in the OR the following week.
I had a Gleason 6. One millimeter of tumor was found in a single core out of 14 samples. Instead of a rush to surgery, I opted for a second opinion that week from a university-based urologist.
He put my mind at ease. He told me I likely would be fine on active surveillance (AS) and showed me a study to back up his advice.
It's been 8 years now and I have had no sign of cancer on biopsy or MRI -- though I am still considered a patient until death with early-stage prostate cancer.
But I have never again experienced anxiety.
The anxiety issue is one I have heard a lot about.
From 3% to 13% of patients on active surveillance for prostate cancer opt out because of anxiety. These patients would rather pursue a "cure" with prostatectomy or radiation -- with risks of erectile disorder, urinary incontinence and bowel issues -- than live with the suspense and anxiety of being on AS.
Researchers from Memorial Sloan Kettering Cancer Center in New York City have shed some new light on anxiety in AS patients. at the American Urological Association's annual meeting in San Francisco.
I spoke with senior author Andrew Vickers, PhD, a statistician at Memorial Sloan Kettering specializing in urology and especially prostate issues, who along with some urologists, conducted the study of 462 patients. Patients, who were a median of 61 years old and had median PSA at diagnosis of 4.3 ng/mL, filled out the Memorial Anxiety Scale for Prostate Cancer from 2000-2016.
Vickers said anxiety in patients on AS is a major concern of urologists. The doctors in part worry that their patients unnecessarily will opt out of AS. 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 problems 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."
The Memorial Sloan Kettering team found that many researchers were missing the mark because they ask more generally about clinical anxiety.
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 the cancer is impacting the patient's mental state.
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?"
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.
His group's study confirmed moderate levels of anxiety exist, but also found that anxiety levels quickly decline as men become comfortable with the diagnosis.
Soon after diagnosis, one in three men report anxiety. After 5 years, one in five do. After 10 years, about one in 10 report anxiety. The tincture of time reduces anxiety.
The study showed that men considering AS can be informed that they may have some initial worry but they'll adjust to AS rapidly and anxiety will likely drop within 2 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.'"
Then, the interview took a twist. 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. Surgery is not a treatment for anxiety," Vickers said.