AS for lower-risk forms of prostate cancer needs celebrity endorsement

The following article was written by two of the founders of Active Surveillance Patients International (ASPI) under the title “Al Roker’s forecast: rising PSA and a radical prostatectomy” and distributed largely by e-mail. It is re-posted here with the permission of the authors.

We were stunned on November 6 when beloved NBC weatherman Al Roker revealed on the Today Show that he had been diagnosed with prostate cancer and would be undergoing surgery in a few weeks. Our hearts go out to him and his family.

“It’s a good-news, bad-news kind of thing,” Roker, 66, explained on-air. “The good news is, we caught it early. The not-great news is that it’s a little aggressive. So I’m taking some time off to take care of this.”

As men with 25 years of experience with prostate cancer between us, we considered the information Roker offered on-air and had some questions:

Did Roker have a second opinion on the diagnosis? He gave no indication he did. But everyone who gets this diagnosis is wise to get a second or even a third opinion to be sure they are satisfied with the diagnosis. Mistakes can be made that result in over-diagnosis and over-treatment.

No rush. Roker said he plans to undergo surgery in a couple of weeks and get it over. This is slow-growing cancer. You can take your time, get your bearings, and make sure you are making the best choice. Just how aggressive? Roker said the cancer was “a little aggressive.” What does that mean?

Just how aggressive? Roker said the cancer was “a little aggressive.” What does that mean?

We wondered what his Gleason score was. The Gleason score is the grade pathologists give to these cancers. The range is from 3 + 3 = 6 for low risk, 3 + 4 = 7 for “favorable” intermediate risk, 4 + 3 = 7 for “unfavorable” intermediate risk, and 4 + 4 on up for the most aggressive cancers.

We asked Roker on his Facebook page for his Gleason score. We are waiting for an answer.

Our educated guess is that he is either a 3 + 4 or a 4 + 3.

If he was a 4 + 3, doctors likely would urge him to remove the gland. Roker said he did consider but rejected focal therapy to partially remove the gland and radiation.

Genomic and genetic testing? These tests can be used to help determine how aggressive a cancer is. We don’t know if Roker underwent this testing. We would expect Roker did.

Did he consider active surveillance? These days, most men with low-risk prostate cancer, like us, and some with favorable intermediate-risk prostate cancer opt for active surveillance rather than a radical prostatectomy. Until a few years ago, radicals were the most common choice. They often caused side effects such as urinary incontinence and impotence. We know men who are angry and depressed because they saw the best surgeon they could find and ended up in diapers and with no libido because of surgical damage.

Protocols vary. But AS involves regular testing of levels of prostate-specific antigen to determine if the cancer is becoming more aggressive, mpMRI scans, digital rectal exams, and other tests.

What about diet and exercise? These factors play an important role in an AS program.

Roker’s case is complicated by his African ancestry.

It is well established that Black men in the United States, Canada, and the Caribbean of West African descent are diagnosed more often and die at higher rates from prostate cancer than their white counterparts.

Hence, some of these men and their doctors have believed that Black men are not candidates for active surveillance. So Black men simply didn’t get a chance to follow a less invasive path.

Three days before Roker’s news came out, a study appeared in the Journal of the American Medical Association that refuted these views on low-risk Black men and active surveillance:

It was once thought that active surveillance was not safe for Black men because of a perception that prostate cancer was inherently more aggressive in this population, which led to unnecessary treatments and side effects, such as urinary incontinence, erectile dysfunction and bowel problems for Black men,” Brent S. Rose, MD, assistant professor of radiation oncology at University of California, San Diego, told Healio. “However, our study showed that Black men who underwent active surveillance instead of immediate treatment were not more likely to have their cancer spread or to die of the disease.

Again, we don’t know if Roker could have qualified for active surveillance. Clearly, many other Black men do but are discouraged from following this path.

Al Roker is a popular figure in America. Many men will follow his model. In England, the National Health Service was flooded recently with requests for screening after two celebrities there went public with their prostate cancer stories.

Our hope is that men will weigh all options, including AS.

There have been few (we know of only two) celebrities who have opted for active surveillance and talked about it. Many have opted for radical prostatectomies — probably more than needed to.

AS needs a “poster child”.

Maybe someday, another celebrity will follow the AS path and let the world know so they can help other men from being damaged needlessly at the hands of prostate surgeons.

You don’t need to be a weatherman to know that fair weather lies ahead for men who choose AS if diagnosed with low- or favorable intermediate-risk prostate cancer.

Editorial note: Mark Lichty and Howard Wolinsky are co-founders of Active Surveillance Patients International. Lichty is chairman of the organization. Wolinsky is a moderator of the Active Surveillance Virtual Support Group from AnCan and Us Too International. This commentary represents the personal opinions of the two authors. We should note that, since they wrote this article, we now know that Roker is to have his surgery at Memorial Sloan-Kettering Cancer Center (MSKCC). There seems little doubt that he would have been advised to consider active surveillance by the people at MSKCC if that had seemed appropriate.

4 Responses

  1. Totally agree with our Sitemaster … MSKCC would almost certainly have given Mr. Roker a fair chance to consider AS if he was a candidate. But from what we know, his disease was more aggressive than would countenance AS.

    That said, Howard and Mark’s piece raises a lot of important points for those who can consider AS. However, Al Roker was probably never an option for “poster child”!

  2. Thanks, Mike.

    On Fri, Nov 13, 2020, 8:05 AM THE NEW PROSTATE CANCER INFOLINK wrote:

    > Sitemaster posted: “The following article was written by two of the > founders of Active Surveillance Patients International (ASPI) under the > title “Al Roker’s forecast: rising PSA and a radical prostatectomy” and > distributed largely by e-mail. It is re-posted here with the pe” >

  3. Thanks for giving light to active surveillance as a consideration when appropriate.

  4. Age has a lot to do with the wisdom of active survveillance.

    At age 76 I was diagnosed with prostate cancer and with a Gleason score of 4 + 3, which is a higher risk than recommended. I chose AS rather than the extreme protocols available. Now at 81 I do not regret my choice because I have about 5 years of great experience and can still opt in to the current treatments if I wish.

    I do not take, nor ever taken, prescription drugs but do use natural supplements and carefully watch my PSA scores on a quarterly basis. My chief concern is the velocity of my PSA and track my PSA doubling time. Currently my doubling time is 4 years and my PSA level rests in the middle 20s (a high risk).

    I am already passed the typical life span of the American male and my typical family male lifespan is just two more years. If I am typical, then I would be on the verge of cancer returning after treatment and would be in more serious trouble than I am right now had I gone through what was recommended to me. Would I do it again? You bet I would.

    A word of warning. … What I did is not for every one because cancer does not treat everyone the same and my overall health has been better than most. I only say all this for one reason. … If you are diagnosed with prostate cancer, don’t blink but step back and take a deep breath and do your research. You didn’t get cancer last month and it will not kill you next month. You have time to decide what is best for you. Be encouraged, you don’t have to be afraid. Life is full enough with stress, don’t let this stress you — stress will do more damage then you can imagine.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: