Dilemma at 76: Stay onboard the Active Surveillance Express? Or hop off the train?

What do you think: To AS or To Not AS?

By Howard Wolinsky

I’ve been a steadfast advocate of Active Surveillance (AS) since I was diagnosed with very low-risk prostate cancer in December 2010 and got on the AS train. And I still asupport AS for about half the 280,000 men a year diagnosed with prostate cancer.

But I starting to think it may be time for me—at age 76—to move on from AS. Hear me out and share your thoughts. I need your help in deciding, and may this exercise will help you, too.

***

AS, close monitoring of Gleason 6 and favorable 3+4 cancers, was an unpopular choice back in 2010. I said “no” to a radical prostatectomy or radiation therapy. Some patients and doctors thought patients like me who went on AS were committing a slow and tragic form of avoidable suicide.

I chose close monitoring rather than risking the quality of life issues, such as erectile dysfunction and incontinence—from a radical, urged on me by my first urologist, “The Notorious Dr. RP.” He said he didn’t support AS, in his words, “that modality.”

His was the majority position of urologists back in those dark days when surgery destroyed the Q of L for a generation of boomer men, many of whom lost their erections and found themselves in diapers or pads for incontinence for a short time or permanently.

Only 6% of American patients opted for AS then compared to 60% now.

(That’s still too low compared with MUSIC [Michigan Urological Surgery Improvement Collaborative] in the Mitten State with 90%+ AS uptake, comparable to that in Sweden and UK.)

But in my case, after 13 years, six biopsies, 80+ cores, two MRIs, and 20+ PSA tests, I am 76 years old, and reviewing the pros and cons of dropping out of AS.

It’s not because I have been diagnosed with more advanced cancer and I’m going to be treated, as in the case of many men who leave AS.

It’s because I have been on AS for so long, everything is stable, my cancer may not be a cancer, and whatever it is, it’s very unlikely to ever go rogue and kill me.

I am an AS “success story.” At the beginning of my AS “journey,” Dr. Scott Eggener at the University of Chicago called me “the poster boy for AS.” He told me that in 10 years’ time, he didn’t expect the cancer to grow. In fact, that budding cancer—less than 1 mm.—was never seen again.

(My local train stop. Flossmoor, Illinois.)

I helped show how patients like me can live with our cancers with the help of close monitoring and sage medical advice. But do we stay on AS until we drop dead? Maybe yes, maybe no. Maybe, maybe.

Could it be time to get off the AS train as I am closer to 80 than 70?

I have heard this ongoing debate over AS AS from several men in their 80s. Some say they want to stay on AS into their 90s. Others want to go cold turkey and stop with the inconveniences—minor as they may seem—of PSA tests, digital rectal exams, MRIs, and biopsies. They figure tey will die with prostate cancer, not from it.

Many of you get your health, especially your ticker, checked regularly. So why not keep riding the AS railway? (I hear the grub is pretty good.)

Both approaches can make sense, especially because there are no medical guidelines. We are strangers in a strange land.

***

If I quit you AS, it would be with the support of a few of the leading urologic researchers in the world. Others disagree.

I surveyed several top docs and they advised me that the odds are virtually nil—though not zero—that I am at risk for a more aggressive cancer. I would be almost perfectly safe taking my chances. Of course, with one exception, nothing is zero.

I asked the experts on what I should do. I will be writing about this in my next the next edition of my blog, “A Patient’s Journey,” in MedPageToday. I’ll share a link.

Thus far, the choices the experts recommended boiled down to these:

—No surveillance. Step off the AS Express and transfer to just living my life free of PSAs, MRIs, and digital rectal exams.

—Minimal surveillance. Maintain the status quo. Continue with PSAs (or PHI tests) once or twice a year for minimum surveillance.

—Magnetic surveillance. It’s been a while since I’ve had an MRI. It wouldn’t hurt to have an MRI as a sort of magnetic “insurance policy” every couple of years to rule out more advanced cancers sneaking up on me. If something worrisome is found, then I could undergo a transperineal biopsy and possibly focal/partial gland therapy like HIFU, TULSA-PRO, cryotherapy, or radiation but no radical prostatectomy. Too old for an RP, but consider focal therapy if danger is observed,

***

The famous “train” song, “This Train is Bound for Glory,” written by Woody Guthrie, and others, is really a get-right-with-the-Gospel song.

One verse has it:

“This train don't carry no gamblers, this train.
This train don't carry no gamblers, this train.
This train don't carry no gamblers -
No crap shooters, no midnight ramblers.
This train don't carry no gamblers, this train.”

Actually, the AS Express is filled with us gamblers. We’re betting that our cancers are “lame”—sleeping lions, rather than snarling tigers—and that we can avoid prostate cancer treatment for years, if not forever.

I felt my odds were good when Dr. Eggener showed me a Canadian study in which mortality was about the same whether you went on AS or underwent aggressive treatment. My calculation was why bother with treatment and take on the risks of nasty side effects? These numbers have held up in other studies.

But as I reported earlier in TheActiveSurveillor, the dropout rate is AS’s “dirty little secret: A whopping 64% of patients leave active surveillance within 10 years of diagnosis, often because of rising PSAs or upgraded Gleason scores. Anxious surveillance, PSA jail, and AS exhaustion, are all factors that can push us off the AS Express.

***

Personally, the odds are heart disease is more likely to “get me” than prostate cancer, according to a gloomy, but pragmatic cardiologist I used to see. The same is probably true for you.

My MI odds are elevated because I had a “widow-maker” heart attack at age 57. My time should have run out. But I beat death then because I had exercised religiously for more than 30 years and developed “collateral” blood flow that kept me right with blood circulation and minimizing heart damage. I still exercise daily and my cholesterol levels are low. In the end, of course, something is going to get us all—100% odds.

***

Several other doctors propose that I not quit AS, but that I stay the course, including Dr. Brian Helfand, my current urologist from NorthShore University HealthSystem, outside Chicago. (Dr. Eggener advised that I go with whatever Helfand says.) Helfand said he expects I have a long life ahead—despite the ticker—and should keep monitoring my prostate.

Helfand and other gurus said I ought to continue on a “modified AS” with PSAs or PHI (Prostate Health Index) blood tests—this is another controversy, but regular PSAs are contained within PHI tests. Some suggest I add an occasional MRI to the mix.

They argue that my 2010 cancer is old news and that based on my age I could be facing a risk for new and possibly more aggressive prostate cancer—though again the odds are low.

(Thinking about whether to hop off.)

***

I am still seeking advice from other urologists and will write about this in my “A Patient’s Journey” blog on MedPage Today in December.

Now, I want to ask for your opinions on whether I should stay on AS or move on.

Please share your opinions on what you to do. Go to https://forms.gle/oFvfH3rPdgJmEbiQ7 Make comments in the comment bubble above or write me at howard.wolinsky@gmail.com.

If you are 75 or above, I’d especially like to know what your AS constitutes now, as your options for aggressive treatment like surgery decline, or how you’ve managed your care.

As we say in Chicago: Vote early, and vote often.

You’ve got questions? They’ve got answers.

By Howard Wolinsky

Starting in November, a panel of experts will answer your questions about Active Surveillance and lower-risk prostate cancer here in TheActiveSurveillor.com.

These top docs will respond to your questions about pathology, urology, radiology, and sex and surveillance.

Send questions via email to mailto:pros8canswers@gmail.com

Keep the questions short and sweet. They should be of general interest. Sign with your real name, initials, or a wistful anonymous name, like “Lost in Flossmoor,” or “From a Desert Island.”

(We cannot offer medical advice. Go to your personal physicians for that.)

Questions will be answered once a month by these experts:

—”The Pathology Report.”Dr. Ming Zhou is pathologist-in-chief at Tufts Medical Center in Boston. He has served on the Cancer Committee of the College of American Pathologists and is the primary author of the genitourinary cancer protocols, the guidelines for practicing pathologists on diagnosis and reporting genitourinary cancers. He serves on the editorial board of several pathology journals, including Modern Pathology and Pathology International. He is the president of the Genitourinary Pathology Society (GUPS), an international urologic pathology organization.

—”Sex and Surveillance.” Dr. Anne Katz is the certified sexuality counselor and Clinical Nurse Specialist at.CancerCare Manitoba in Winnipeg, Canada. She is the immediate past editor of the Oncology Nursing Forum, the premier research journal of the Oncology Nursing Society. She was recently appointed as Associate Editor of CA: A Cancer Journal for Clinicians (American Cancer Society). She was inducted into the American Academy of Nursing in 2014. She is the author of 15 books for healthcare providers and healthcare consumers on the topics of illness and sexuality as well as cancer survivorship.

—”The Urology Report.” Dr. Michael Leapman is an Associate Professor of Urology; Clinical Program Leader, Prostate & Urologic Cancers Program, Yale Cancer Center; and Assistant Professor, Chronic Disease Epidemiology. His special interests include low-risk prostate cancer and Active Surveillance.

—”The Radiology Report.” Dr. Antonio Westphalen is Section Chief of abdominal imaging at the University of Washington and UW professor of radiology. Dr. Westphalen’s research interests are centered on the use of advanced imaging technologies to diagnose and treat patients with prostate cancer.

SEND YOUR QUESTIONS TO: mailto:pros8canswers@gmail.com

Join ASPI in celebrating Thrainn Thorvaldsson

By Howard Wolinsky

Icelandic support group trailblazer Thrainn Thorvaldson, who started the world’s first support group for Active Surveillance, is being honored with ASPI’s for Patient Advocacy Award Saturday, October 28 at 12 pm-1:30 p.m. ET.

Following the ceremony, we will open the floor for discussion from the audience.

Register Here https://zoom.us/meeting/register/tJMrcuuqrTgiH9WrrznAmLJvh-xOcZT6Fg2q

ASPI’s prior award programs have included The Chodak award, named for ASPI’s first medical advisor and AS pioneer, the late Dr. Gerald Chodak, honoring Dr. Laurence Klotz, the father of AS in 2022 and Dr. Peter Albertson, who led some of the earliest research on AS, in 2023. The ASPI AS Advocacy Award went to the MUSIC (Michigan Urological Surgery Improvement Collaborative this year.

Researcher talking to Orange County prostate group on AI

By Howard Wolinsky

Dr. Daniel Spratt, chair of radiation oncology at University Hospitals Seidman Cancer Center and a professor at Case Western Reserve University School of Medicine in Cleveland, Ohio, one of the leaders in AI biomarkers and prostate cancer.

He said: “The real immediate use is that this biomarker can be an adjunct, or it can be something to assist in making the shared decision making with patients [with prostate cancer].” He is using AI in deciding whether to use Androgen Deprivation Therapy (ADT) in some patients.

The next step with this technology is helping men make decisions on AS.

Spratt will be speaking on AI in prostate cancer treatment at 8 p.m. Eastern/5 p.m. Pacific on Thursday, Oct. 26, on Zoom to the Prostate Forum of Orange County:

https://us02web.zoom.us/j/85477749453

Meanwhile, check out a Q&A I ran in August with a researcher from ArteraAI:

Dr. Felix Feng, Scientific Advisor to ArteraAI, stressed: “The ArteraAI Prostate Test is the first test that can both predict therapy benefit, particularly in the context of who should receive hormone therapy, and prognosticate long-term outcomes in localized prostate cancer. The long-term goal is to enable personalized care for patients.”

The take-home for those of us on Active Surveillance is that ArteraAI Prostate Test isn’t ready for us yet—but may be coming soon.

Denial is not just a river in Egypt

By Howard Wolinsky

Harris Poll did a survey, commissioned by Bayer, on how Americans view cancer. Many of us are fearful and want to put our heads in the sand.

One in four (27%) told pollsters that they would prefer not to know they had cancer. About one-third (31%) said they avoided seeing doctors for fear of what they might learn.

There’s more:

• 49% are not knowledgeable about prostate cancer

• 49% didn’t know that a man's race impacts his risk for prostate cancer 

• 38% are not very knowledgeable about breast cancer

• 48% were unaware that breast density impacts cancer risk/diagnosis 

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