Active Surveillor readers advise what to do next when you're 75 and above and on AS. Most recommend staying aboard the AS train.

Also, Dr. Geo on a world without biopsies.

By Howard Wolinsky

Back in late September, when I turned 76, my urologist, Brian Helfand, MD, PhD, told me I was good to go for another year on Active Surveillance (AS).

I asked:  “Do I really need to stay on the AS train? I’ve been on this path since December 2010 and had about 30 PSA (prostate-specific antigen) levels, six transrectal biopsies, and two MRIs. Wasn’t it enough already, especially since everything has been stable and no cores with low-risk or any “cancer” have been seen since December 2010 when a single core of less than one millimeter of Gleason 6 was uncovered? Seemingly, it has evaporated into the vapor—though the uros say it is still there in hiding.I wonder,

I’ve been lucky with prostate cancer lite. Everything is stable. My PSA level is 5.1, about the same as it has been for a decade. Helfand recommended that I stay the course, monitoring my prostate with annual PSA tests. I haven’t had an MRI or biopsy since 2017.

Astrict pathologist I spoke to recently told me I was “noncompliant” with AS. Ouch.

But Helfand insisted that I am on AS, a deintensified, personalized version with annual PSA tests, technically, the Prostate Health Index (PHI), which includes traditional PSA. I call my approach passive-aggressive surveillance--still surveilling but not aggressively. 

Helfand told me: “Your tumor behavior, and the overall factors that we continue to measure appear to be reasonable. There would be a low likelihood of this type of tumor progressing, and or going on to metastasize and or kill you. However, there is still a possibility that in the next 10+ years, you could develop a more aggressive type of tumor that would have the potential to metastasize. That is why I would advocate for you, that we would continue surveillance.”

Still, I wondered, I asked 16 other global experts on AS from five different countries. Indeed, they said my risk if I chose to walk off into the sunset was nearly zero but not zero.

Laurence Klotz, MD, one of the “fathers” of AS, told me: "Your risk of dying of prostate cancer is very close to zero, given the initial extent of disease and your stability over many years. I wouldn't bother with the PHI test. If you were my patient, you would have semi-annual PSA tests for another few years, and likely one more MRI. A biopsy would only be performed if your MRI showed a very large unequivocal lesion."

OK. Less than 1%. Can you tolerate a less than 1% risk of getting metastatic cancer? Can I?

I am still mulling what to do. I am not due for another PSA in March or later, and I have a standing offer from Helfans of an MRI. So I have time.

In a blog for MedPage Today, I asked the question of how to deal with AS with low-risk prostate cancer in men 75 and above to 16 top AS experts/advocates. Most (12) said they’d recommend some version of AS with annual PSAs and possibly occasional MRIs. All the urologists discouraged more biopsies -- unless my PSA shot up.

So, I asked the readers to respond to The Active Surveillor Poll on what they thought about ditching AS at age 75 and above just getting off the AS choo-choo and riding off into the sunset. I’ll share your thoughts and those of the urologic oncology experts along with my current inclinations.

I received 145 responses from patients. (Thanks to all of you.) Most (89%) are on AS, while others were newly diagnosed and considering their options, or had dropped AS because their cancer progressed, or they couldn’t stand the emotional distress AS can trigger. Their age breakdown was: 75 and above, 36%; 70-74, 32%; 60-69, 28%, and 59 or below, 4%.

Only 10% said if they were in my situation, they’d quit surveillance and put AS in the rearview mirror.

The patients (90%) were far more conservative than urologists (75% of whom) about staying on AS.

48% of patients would add occasional MRIs to be safe. Only a handful of urologists recommended that approach.

59 respondents shared their thoughts on protocols they follow, especially after 75, which highlighted the “Wild West” aspect of “guidelines” for AS.

Here’s a sampling:

--Twice yearly PSA, MRI when suggested by urologist (only 2 in 2021 and 2022), minimal red meat and semi-veg diet, exercise (tai chi, bicycle, hiking, cutting wood).

--I follow Johns Hopkins’ protocol. For now, due to my age and negative biopsies, they have suspended planned MRI and biopsies.

--I also am 76 with 3+4 lesions. My father was 86 when he underwent a colonoscopy and they found cancer. He was operated on successfully although the recovery was long. Most people over 75 don't have colonoscopies. Had he not found it, it would have killed him. I don't see prostate cancer any differently. Hopefully, I can stay on AS indefinitely, but you never know when it may rear its ugly head - and why not protect yourself? There are so many other ways that will end your life - you don't need to add to the options.

--Annual PSA, MRI at 2- to 3-year intervals if PSA rises substantially. Biopsy only when and if the urologist recommends based on MRI results and/or other objective data.

---PSA every 6 months, MRI every 2 years, and biopsy every 2 years.

--PSA every 6 months, biopsy every 2-3 years (ugh!), exercise, a good diet, a few supplements, fun!

--I was diagnosed in February 2019 at age 75. I turned 80 last August. I've had three MRIs and two biopsies during this timeframe; the first in 2019 (transrectal) and the second (transperineal) this last summer. Currently on 3-month PSA test intervals, annual MRI(next in August 2024); Future biopsy schedule will depend on analysis of PSA and MRI. Whether I continue on AS will depend on the next tests including the August 2024 MRI. My oncologist is keen to see the records for four years. If nothing has changed in four years, we may consider riding off into the sunset. On the other hand, if something has changed for the worse, I'll have to reconsider.

--PSA every six months, occasional MRI, exercise three times a week, proper diet (Dr. Bernstein's diet)

--PSA every 6 mos., prostate exam. Would do MRI or biopsy if PSA goes up dramatically or if recommended by doctor.

--Annual MRIs.

--PSA every 6 months and annual MRI.

--Want to obtain frequent PSA and see a urologist who believes in AS.

--The fundamental reason I remain on AS is the possibility of a relatively innocuous treatment being developed for Gleason 3+4.

This (unscientific) poll showed me that men on AS strongly support staying on PSA testing at 75 and above. Also, the respondents and their urologists are relying on MRIs before deciding to do biopsies. Fewer than 50% of cases are managed like that in the U.S., but this MRI trend is growing strong.

Michael Leapman, MD, MHS, clinical lead in prostate cancer at Yale Cancer Center in New Haven, Connecticut, and a columnist in this newsletter, told me: "There's no script for what to do 10-plus years without reclassification [of the Gleason score]."

So those on AS often find we and our urologists are in uncharted waters because AS has only caught on in recent years,

Ola Bratt, MD, chairman of the national working group for organized prostate cancer testing in Sweden, which has the highest AS uptake in the world, told me, "You raise an important issue. Guidelines are needed for men of all ages."

Commuting on the local train or riding long distances on the AS train, each of us will have to make our own decisions-- with input of course from partners, family, friends, and our doctors-- about whether to stay on the train, transfer to another treatment line, or hop off the train and take our chances with “watchful waiting.”

I have time to make my own decision. Part of me wants to break away and stop with the PHI/PSAs and never have another MRI or biopsy. Part of me figures out what’s the big deal? Why not have a PHI/PSA test once or twice a year and possibly an occasional MRI. After all, I have a history of a fluke widow-maker heart attack 17 years ago, and I undergo tests for lipids and get checked out by preventative cardiologist annually. 

I especially liked the advice from Kevin Ginsburg, MD, MS, co-director of the prostate program with the pioneering MUSIC (Michigan Urological Surgery Improvement Collaborative), which has the highest uptake (above 90%) of AS in the U.S. He recommended PSAs, or, based on Helfand's preference, PHI, for the next 2-3 years. If the PSA shoots up, he'd recommend an MRI.

Ginsburg added: "Who knows what the future holds, but in 2 years, if your MRI looks good, PSA is stable, and now you are 78 or 79, that may be your last MRI and we'd transition to more of a watchful waiting approach."

I’ll let you know once I decide\.

Living ‘the AS dream’: A world without prostate biopsies

By Howard Wolinsky

John Lennon was a dreamer. In “Imagine,” in 1971, during the Vietnam War, he pictured a world in peace: “Imagine there's no countries/It isn't hard to do/Nothing to kill or die for/”

Podcaster and NYU naturopathic physician Dr. Geo and British urologic visionary Dr. Mark Emberton share a more modest dream—close to our prostates—a world of surveillance without prostate biopsies and risks for sepsis and other issues,

“Imagine a future where a biopsy will not be needed to diagnose prostate cancer. I thought that would never be possible, but as the old saying goes, ‘never say never,’” said Geo.

Focusing on a landmark German study, Emberton shares in the Geo podcast insights on how PSMA and MRI imaging might soon render prostate biopsies a thing of the past.

Geo said his hour-long conversation with Emberton gets “into the nitty-gritty of the study's results, which point to a future where a combination of PSMA and MRI scans could detect prostate cancer with astounding accuracy. Dr. Emberton examines the implications of this on the U.S. healthcare system and whether it can become the new gold standard for prostate cancer screening.”

Per John Lennon, you may think Emberton and Geo are dreamers are dreamers, but they’re not the only ones:
I hope someday you'll join us
And the world will be as one.

To listen to Geo’s podcast episodes, go to:

Apple Podcast, Spotify, Amazon, Google Podcasts, YouTube