Part I: Does age matter with Active Surveillance?

AS at age 101? It could happen.

By Howard Wolinsky

In September, I celebrate my 75th birthday, my diamond jubilee. (It’s the 29th for those of you who like to send extravagant gifts.)

Just like Her Majesty Queen Elizabeth with three-quarters of a century on the throne.

What does age 75 mean regarding Active Surveillance? Read on.

In one of the support groups for AS I helped start, we have a couple of guys in their early 80s who debate what the future holds regarding AS and prostate cancer. They both have low-risk prostate cancer.

Allan Greenberg is considering stopping the annual ritual of prostate-specific antigen (PSA) blood tests and digital rectal exams along with the occasional MRI scans and biopsies.

He feels he has benefitted from AS, but it may be time to accept he has had a good life, stop the medical monitoring and accept whatever the future brings him.

He probably will live out his remaining years, square dancing, and meditating on these issues--without any prostate cancer scares.

Howard Furer, a devout vegetarian, has fully embraced the AS lifestyle and sees no reason to quit as he looks ahead to his 90s. It makes sense to him to keep being surveilled for the rest of his life, peacefully co-existing with his cancer.

Very few men like Allan and Howard will develop life-threatening, aggressive prostate cancer. 

But AS in many ways is terra incognita, an unexplored territory. We’re pioneers in learning to cope with liveable cancer, a contradictory idea for many patients and their families.

AS was developed in the late 1990s. So it’s not exactly new.

But until recently, very few people who were candidates opted for it. Instead, the vast majority took an aggressive approach for a typically non-aggressive Gleason 6 prostate lesion. They found it difficult to accept they could safely live with prostate cancer, though the research showed it was a real possibility.

Only in recent years have the majority (60%) of American patients with low-risk prostate cancer opted for AS. (The rate was 6% when I started in 2010, but it is better than 90% now in Sweden.)

There are no guidelines recommending an age to stop AS. 

As the years pass for me, next year will be my 13th on AS, I have realized that AS patients and doctors on AS negotiate to some degree their management approaches if the PSA levels, MRIs, physical exams, and biopsies are good.

My friend Mark Lichty, co-founder of Active Surveillance Patients International, hasn’t had a biopsy in 17 years. I used to question whether he was on AS at all. He recently had a multi-parametric MRI, which gave him an all-clear. So on AS, he remains.

In my case, I have noticed that doctors who used to push annual biopsies on me and then biopsies every other year, now support watching my so-called cancer with the PHI Prostate Health Index) blood test--a type of PSA--annually. 

I haven’t had a biopsy or MRI since 2016.

My current urologist, Brian Helfand, MD, PhD, said I may be done altogether with MRIs and biopsies. But he still recommends annual PHI tests and considers me on AS. He said my Gleason 6--a single core of less than one millimeter, seen once in 2010--is the “lamest” he has seen. 

I asked Helfand whether if I came to see him today for the first time whether I would be diagnosed with prostate cancer. Based on my PHI results, which dropped 25% since 2021, he said I likely wouldn’t. I suspected that.

A bad prostate day set me on a course of surveillance for a dozen years.

I asked a couple of prominent researchers and clinicians about when we should, or if we should, bolt from PSA prison and the biopsy assembly line.

The bottom line? It’s an individual matter, depending on the patient’s health and philosophy toward living with prostate cancer.

My PSA has leveled off at 4.8-5.2 for the last six years. At its peak, it was nearly 9.  Recently, it dropped down to 4.5. 

As we age, PSA is supposed to increase about 0.4 points per year. No one can explain why my PSA has settled down. 

I have had six biopsies with more than 70 cores, or samples, taken in 12 years. Only a single core had less than one-millimeter involvement. 

I was among the first patients to undergo multi-parametric MRI prostate scans for prostate cancer in 2011. Two lesions were found on opposite sides of the prostate. But the radiologist considered them so minimal he didn’t bother to give me a PI-RADS rating for them.

A urologist friend of mine, the late Gerry Chodak, MD, from the University of Chicago, told me I could choose to believe this was an accurate test. His years of experience led him to say that at least one of these “lesions” was a false signal, an artifact. Maybe both. His advice was to ignore the test.

I repeated my MRI in 2016. No lesions were spotted. Again, the radiologist didn’t bother with a PI-RADS score.

My experience is NOT typical.  Yours is not typical either. All of this has to be individualized in consultation with our physicians.

Helfand, of UChicago and NorthShore University HealthSystem, my current urologist, recently at my annual visit--this time a virtual one--again called me the “poster child for AS.”

(Back in the olden times, 2010, my former urologist, Scott Eggener, MD, of UChicago, called me, as I recall, the “poster boy for AS.” We weren’t as woke back then. Helfand said, “I think you should be ‘poster child.’ Assigning gender these days is very risky.”)

Does it make sense to have a “preventive” surgery or radiation therapy on the chance that your cancer becomes aggressive and you’re too fragile to be treated or to undergo general anesthesia?

So should we undergo preventive or preemptive prostatectomies when we hit 80?

Do patients want to quit AS and have their prostate out to avoid trouble later?

Eggener said he has never encountered patients seeking treatment because they fear the window slamming down at age 80 and above.

“I don’t see it but maybe I have a unique practice. If a guy has low-risk prostate cancer and he’s doing well regardless of age, I’d never say, ‘We need to go do something because one day you’re going to get older.’ But perhaps that happens.”

Eggener said most urologists are thoughtful and “think of age as but a number. And we’re more interested in physiologic age and how long they’re going to live and their overall health. In general, as you get older, there are more risks to surgery from anesthesia itself and side effects of the surgery.”

Helfand agreed.

“I have one patient who is on active surveillance. He’s now 78 or 79 and I say, ‘Listen. You’re fine. You’re totally fine.’ He says, ‘I just want to make sure that surgery is still an option. Because if it’s not, I just want to be treated.’

“And I said, ‘Are you on drugs? Who says that?’ We wouldn’t do that anyway. And the truth is you should be thankful that we’re not talking about any treatment because you’re doing fine. But it is that mentality of I don’t want to lose out on a treatment opportunity that I’m interested in. And I don’t want radiation. I’ve heard all about it and I don’t want it. But that doesn’t mean to treat you. That’s ludicrous.”

How old are we anyway? We have a chronological age. We also have a physical or biological age.

When I was 33, I wrote an article about emerging “wellness” programs. I participated in one. I filled out information on diet, exercise, smoking habits, cholesterol levels, etc. The results indicated I was 14 biologically. I have never smoked or been a fan of booze. A donut can tempt me. 

The wellness survey concluded that if I increased my exercise a bit, I could achieve the biological age of 13. I didn’t bother. Those teen years are tough. Never again.

(Satchell Paige, Hall of Famer)

Time to cue up baseball great Leroy “Satchell Paige,” the oldest man to play professional baseball--he pitched a shutout for KC against the Red Sox at age 59.

He was credited with saying so many wise things, especially about age:

--Age is a case of mind over matter. If you don't mind, it don't matter.

--If you didn't know how old you were, how old would you be?

When you see your doctor, he or she likely is sizing up your age with an eyeball test--looking you over and factoring in your health risks--or plugging your data into an insurance calculator to determine your physical age. This will help determine recommendations.

Matthew Coperberg, MD, MPH, an AS guru from the University of California, San Francisco, shared his views on AS and aging patients.

I mentioned to him how some guidelines recommend stopping PSAs at age 69 in men who have never been diagnosed even with the wimpiest of Gleason 6s.

“If your PSA has been stable up to age 69, yes, you’re fine. But if it’s been rising, or it’s been variable, or you’ve never had a PSA test and you’ve got a long life expectancy, those decisions certainly can be individualized,” he said.

(There’s that word “individualize” again.)

“There are things we can do to make sure we’re not missing a high-grade cancer, but it’s going to be very uncommon to get to 80 with a reassuring PSA history and then have something change later in life. That can happen. But it’s uncommon,” he said.

He said PSA density, the size of the prostate, free PSA levels, or marker panels such as 4K or ExoDX can help in making these decisions.

Cooperberg noted about PSAs: “4 isn’t that high but it’s also well above the median. If you are 80 years old with an 80-gram prostate and a PSA that has been a stable 4 for a decade, that’s fine. But if you’re 80 with a 25-gram prostate and your PSA is 4 and it’s gotten there from 2 over the last year and a half, that’s a different situation.”

Eggener, too, has patients on AS in their 80s with low physiological ages.

How old would he go with AS?

“It depends. What I would tell you is we try our best to individualize for every patient. There is really good data that has come out over the past few years where we can tailor the surveillance regimen based on the guy’s age and health and what we know about his cancer. 

“When I started doing surveillance, I had a set regimen. They needed biopsies every year or two. [Note: I was there and had those annual biopsies.]  Now, there’s really great data for certain men where we don’t biopsy them unless it’s every four years and I’ve even let a lot of guys go more than every four years, but there are so many factors that go into that. There is no easy way to write about it or use an algorithm. But there are a ton of different factors that go into that decision.”

In my view, doctors have gut feelings about what to do with our AS based on their experience.

I was a compliant patient and underwent annual biopsies with Eggener. After five years or so, he told me he had a good sense of how my prostate worked and suggested I take a biopsy vacation. It was well earned.

I didn’t have another biopsy until I moved over to Helfand’s practice six years ago--now halfway in my “cancer journey.” He wanted a baseline. Neither an MRI nor a biopsy uncovered any cancer.

Cooperberg said that in his practice he has “plenty of men in their 80s.” 

“I have a gentleman who is 101 years old who I first met in his early 90s. He had already been on surveillance for years. He was one, I mean honestly, you would never think this would be a problem, that we watched for many, many years and eventually in his late 90s the cancer really started progressing. Now, he’s needed radiation and he’s getting into a more aggressive state at 101 years old. But he’s functionally still quite good. It’s a tricky thing. If we had treated him in his 80s, he probably would have avoided what he’s having now, but who knows what other problems we might have introduced in between. This guy at 96 was still flying back and forth to Europe to see his family. So, he’s enjoyed a greater quality of life in between.”

Generally, Cooperberg said, as men reach their 90s and beyond, they don’t need to be followed intensely.

He said, “Somebody who has been on active surveillance, stable, with low-grade disease until their 80s, can generally transition to watchful waiting. Watchful waiting could mean following with PSA or it could mean nothing at all. And that depends on other health factors such as  life expectancy.”

Helfand said men’s health gets more complicated as they age, adding comorbidities, such as heart disease, high blood pressure, respiratory disease, cerebrovascular disease, joint disease, and diabetes.

He said these factors can transform a man’s treatment for prostate cancer. Active surveillance can inch its way to the more passive watchful waiting.

“I have guys who are technically in the (AS) program. We haven’t talked about having a biopsy or doing anything and even checking blood work. We’re not going to do anything. These are guys in their 90s,” he said. “I’m not sure at this point why you keep coming except that we all feel better, but I don’t really want any data on you. That’s not truly active surveillance. I think active surveillance where we’re biopsying I would say the oldest guy is somewhere mid-80s and those guys are really active. Really healthy.

“If you are from a stock that has longevity in your family, and you’ve taken good care of yourself, and you have no medical problems, by the time you’re 85 and still alive and well and doing great, we can’t not screen or follow him.”

We all age differently. Our fate may be in our genes. My maternal grandmother lived to just under 100, but my mother died in her mid-60s from primary breast and colon cancer.

Helfand recommended two years ago that I stop having biopsies. If my PHI test rises significantly, he would recommend an MRI.

He said I am still a viable AS patient, with my own “Howard brand” of AS, veering slightly toward watchful waiting.

Helfand said: “We are inadvertently moving you more to a watchful waiting strategy knowing that the information we have is already biased in a positive way because all of your values have been so good. And you’ve been evaluated with every test that everything comes to the same conclusion– you are boring.”

He advised me: “I’d tell you you’ve got good news on top of good news on top of good news, and we’ll dial back on the frequency of the active surveillance but check your PSA once a year or so. If there was ever a sustained increase year over year and you’re still healthy and going to live a while then there may be some value in looking around your prostate to make sure there is nothing dangerous. Obviously, if you’re hanging out at a PSA that’s so low no matter how old you are, I’d continue to do very little.”

So this is where my AS is for now. I’m in a holding pattern, where a lower level of surveillance is a good fit. No more biopsies are apparently on the horizon, depending on what the PSA winds bring.

I’ll accept this plan as my diamond jubilee gift.

---