I have been on active surveillance (AS) for prostate cancer since December 2010. But though I generally am a compliant patient, I increasingly have become resistant to MRIs and biopsies.
I have had five biopsies since 2010. Only a single core out of 60 has revealed any cancer -- less than one millimeter back in 2010. It was never seen again.
In the beginning, I had annual biopsies; lately, I have been on a biopsy vacation.
When I heard about potential sepsis, I became uncertain about being needled.
I worry about the potential, though rare, for deadly infections. My hospital takes steps to prevent infections (they have a low rate in prostate biopsies, one infection in 6,000 patients vs one in 1,500 nationally), but sepsis is a killer.
My urologist, Brian Helfand, MD, PhD, chair of prostate cancer at NorthShore University HealthSystem in suburban Chicago, has listened to my concerns about being on the biopsy-MRI train.
He doesn't shy from biopsies. He once told me: "How can I surveil you without a biopsy?"
It has been 2 ½ years since my last biopsy. I questioned that last biopsy because it had been preceded with a negative multiparametric MRI. This was supposed to be a targeted biopsy, but there was nothing to target.
I had lingering questions, but had a random biopsy anyway.
In the intervening months I have spoken to many experts about the need for biopsies, how often they ought to be done, whether they ought only to be done if MRI reveals some suspicious areas.
The intervals followed varied from every year to four to five years in the pioneering AS program run by Laurence Klotz, MD, at the University of Toronto.
(Was Klotz practicing good medicine and avoiding unnecessary biopsies, as I believed? Or was he following the direction of a socialized national health program in which less is better, as some of Klotz's American peers suggest?)
In any case, most doctors I have spoken with now think that a biopsy is warranted only if it is targeted.
MRIs have been gaining credibility as being more reliable in searching out prostate cancer than the "harpoons," as critics call random biopsy needles.
But there are issues in this area, too. A growing number of patients are questioning the use of gadolinium contrast in MRIs. It's known that patients with impaired kidney function can face problems with gadolinium.
Research has shown it's deposited in other organs. There is no proof of problems yet -- but some radiologists are raising concerns and these have penetrated the consciousness of patients like me, if not, that of our urologists.
I have other issues with MRI. I have to white knuckle it. I get claustrophobic inside the tube. Plus, I have tinnitus that started from damage caused by improper hearing protection when I had my first MRI in 2011 at the University of Chicago.
So prostate worlds are colliding. I was building up a head of steam as I anticipated my next prostate exam. I planned to resist any other biopsies and MRIs. I was on AS, but a biopsy and MRI resister.
I explored alternatives to biopsy and MRI at the Cleveland Clinic and Brigham and Women's Hospital in Boston, among other places. (I will be writing about these in the months ahead.)
Meanwhile, other things are happening in prostate cancer care, especially prostate-specific antigen results. It's said the PSA is prostate-specific but not cancer-specific. But many urologists rely on this blood test to monitor patients on AS.
PSAs can jump around for many reasons: Prostate infections. Sex before a blood draw. Bike rides. Seasonal factors.
My urologists in recent years have been prostate whisperers who feel they understand my prostate and PSA patterns. They haven't been upset when my results have gone as high as 9 ng/mL, and they haven't been giddy when it slipped under 5 ng/mL.
Helfand told me in December he had just attended a conference where most urologists said they depend on the PSA results in managing their patients. He doesn't.
Since 2016, Helfand has given me PHI (Prostate Health Index) scans, which include the traditional PSA plus a couple others that are fed into a formula to create the PHI.
"I don't depend on [the traditional] PSA," he said.
So he -- and therefore I -- didn't freak out when in December my PSA shot up to 8.3 ng/mL from 5.23 ng/mL last summer. Years ago, I would have become anxious about that reading. I wasn't this time.
Helfand downplayed the rise in total PSA. "Your PSA went up for reasons other than prostate cancer," he said.
He said maybe it went up from spicy food I was eating in Thailand and Cambodia only a few days before I had the blood drawn for the PHI.
My PHI was 28.5, the lowest since I started on this testing twice a year. Helfand has described such results as being the minimum to be considered to have prostate cancer -- even in the face of a rising total PSA.
Still, was I biopsy or MRI bait? Nope. To my surprise, Helfand said he didn't think I needed another biopsy now. "No need to," he said.
In 2010, I first walked into the office of a surgery-happy urologist who wanted to rush me into the OR. I got a second opinion and went on AS and dodged surgery.
In 2018, I left the urologist's office with a spring in my step because I dodged a biopsy and MRI.