No worries, Jack. Renaming Gleason 6 as a noncancer won't hurt Big Cancer's pocketbook. Say what?

Some reflections as Prostate Cancer Awareness Month ends

By Howard Wolinsky

Imagine this scenario: Gleason 6, low-risk lesions were suddenly redefined as noncancers.

What are the implications of this ]thought experiment, which, BTW, is nowhere close to becoming a reality?

—We could experience a collective sigh of relief. Our emotional distress [anxiety, depression and stress] levels would drop. Financial toxicity, including insurance discrimination, would end. We wouldn’t feel we had to keep these diagnoses secret from our bosses and others.

—We’d be asked to continue with surveillance. And the vast majority of us likely would. (see below.)

—The number of prostate cancer cases—the most common cancer in men after skin cancer—would plummet since we low-risk patients make up about a third of the 288,000 cases of prostate cancer that, according to the American Cancer Society (ACS), will be diagnosed this year. The statisticians would have to adjust their bar charts.

So would all be peace and light in the cancer world? Maybe not.

What would this sea change do to “Big Cancer” and its fund-raising efforts? With a reduced fear factor, will donations to ACS, the Prostate Cancer Foundation, and other charities decline significantly?

This may be crass, but these are very real questions on the charity side of the cancer world.

I got some insight on this question as an attendee—and speaker—at a conference earlier this year, and am reflecting on this as Prostate Cancer Awareness Month winds down this week.

There are plenty of controversies surrounding the concept of renaming Gleason 6 as a noncancer. But I hadn’t realized that filling Big Cancer’s coffers was one of them—naive little me.

The bottom line is that low-risk prostate cancer—as common as it is—is barely a blip on the radar of the major charities. We’ve long been the Rodney Dangerfields of the Prostate Cancer Universe. We get little respect—or love, expressed in the form of dollars for research funding, though the charities are more than happy to accept our donations.

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Some background

First, some background on relabeling Gleason 6 as a noncancer.

The argument in favor is that Gleason 6 may look like cancer, but it doesn’t act like one. The experts say it won’t spread, and it won’t kill you.

But the diagnosis can hurt you—with emotional distress like anxiety and financial toxicity like insurance and job discrimination.

Critics of the proposed change, including about half of urologists and 90% of pathologists, argue that if Gleason 6 (Grade Group 1) is called a noncancer, lots of us will drop surveillance and will put us at risk of missing serious cancers of Gleason 3+4 and higher. There also could be legal ramifications if a doctor supports your decision and you end up with advanced prostate cancer. Sounds like a malpractice suit waiting to happen, no?

As a patient, I have co-authored some papers taking the affirmative to the reclassification of Gleason 6 to reduce emotional distress and financial toxicity.

I helped run a survey, working with leading patient support groups and prostate experts, of more than 450 patients, finding that only 5% would drop surveillance if GG1 were called a noncancer. (Doctors worry this would put these men at risk for undiagnosed aggressive prostate cancers.) 82% would stick to their surveillance programs. The remainder were undecided.

I presented the paper online in February during a offsite meeting on renaming Gleason 6 at the American Society of Clinical Oncology Genitourinary Cancers Symposium in San Francisco. More here on my presentation and the survey.

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Where does PCF stand on the re-naming game?

I vaguely wondered what the Prostate Cancer Foundation might have to say. I didn’t figure it was a burning question for them and was surprised to see PCF speakers on the program.

Charles “Chuck” Ryan, MD, president and CEO of the PCF since 2021, and his new chief medical officer William Oh, MD, addressed the idea of renaming Gleason 6 as a noncancer at the same session.

They didn’t mention anything about the health of patients.

They wondered aloud whether a redefinition of Gleason 6 would interrupt the bucks rolling into groups like theirs.

Say what?

Ryan is a top medical oncologist and has earned the admiration and trust of patients with advanced prostate cancer and his medical colleagues alike. He made his mark in developing new treatments for patients with advanced prostate cancer.

(Charles Ryan, MD, CEO of PCF.)

Since he joined PCF, I tried to engage him on PCF and active surveillance. He has been cordial but elusive. I’m not surprised. He wouldn’t have much to say to be as I nag him to devote some attention to low-risk Gleason 6.

Check out my column on “Chasing Dr. Ryan.” I felt like documentary director Michael Moore in the 1990 movie, “Roger and Me,” in which Moore tries to track down Roger Smith, CEO of General Motors” to hold GM and its CEO accountable for the economic damage to Moore’s birthplace, Flint, Michigan.

At the meeting, Ryan discussed “the problem” (his word) charities like his might face if Gleason 6 were removed from the cancer list. It was a straw man argument. He conceded PCF was not a bit concerned. Yeah, they’ll be all right, Jack.

Apparently, Gleason 6 could fall off the face of the earth. It wouldn’t matter to the major charities. Our issues are just not that significant compared to those of the small proportion of patients with deadly cancers.

Many of us worry, without justification, by the way, that we ultimately will die from prostate cancer. Advocates for change say we don’t have to worry about PCa.

(For the record: Our real problem is heart disease. That’s what is going to kill most of us. So if you’re feeling like giving to a charity to help yourself, you might consider one dedicated to heart disease and stroke. My advice? This Prostate Cancer Awareness Month, consider donating to the American Heart Association.)

No denying, PCF has done a great job funding the development of treatments to gain days, weeks, months, and years for guys in dire straits. But what about us lower-risk patients?

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PCF: What me worry?

Let’s look at the Gleason 6 issue from PCF’s POV.

Regarding re-labeling Gleason 6, Ryan explained: “I don't fear this problem. I don't fear this change, I should say. I don't think … without the fear of cancer, there's to be a decrease in philanthropic donations because people aren't going to be scared, and people aren't going to be donating out of fear.”

Yes, if I am hearing this correctly, he is conceding that the “Fear Factor” wasn’t just a TV reality show but a strategy, to some degree, to stoke our fears of cancer to raise funds.

The same would be true for the American Cancer Society, which recently has started to pay lip service to prostate cancer, though not to the low-risk kind. See my article in Medscape Medical News. Breast cancer has been the ACS’s major concern historically.

(Logo from the TV reality/dare show that ran on NBC.)

Also, Ryan’s catchphrase could be the same as that of the immortal Alfred E. Newman of Mad Magazine: “What me worry?” Low-risk Gleason 6 is no priority in big stakes prostate cancer research funding.

Ryan told this meeting concerned with low-risk prostate cancer: “What we [PCF] are trying to do is reduce the death and suffering for prostate cancer. … We're going to try to reduce the death by finding new treatments and cures even for advanced disease, castration-resistant disease, and to try to support the development of human capital around designing clinical trials and doing the work that can accomplish the goal of reducing the death from the disease.”

The Gleason 6 debate simply is not a PCF problem.

Ryan’s colleague, Dr. Oh, led a breakout session on advocacy and renaming Gleason 6. He discussed whether advocacy groups might lose money if AS were renamed.

I attended virtually and had to shout to get the attention of in-person attendees because of theirtechnical problems.

Not surprisingly, Oh, former Chief of the Division of Hematology and Medical Oncology at the Icahn School of Medicine in NYC, ​​framed the advocacy issue in the same financial terms as Ryan.

(Dr. William Oh, CMO for the Prostate Cancer Foundation.)

Oh summarized the proceedings for me, asking rhetorically whether advocacy groups would feel “less relevant or get less philanthropic donations, for example, and thus be opposed to the idea of the Grade Group 1 renaming.”

He answered his own question: “I don’t think that people would think that was any threat to the organization whether it is the American Cancer Society or Movember or Prostate Cancer Foundation or other organizations.”

I told him I agreed that making GG1 (AKA Gleason 6) a noncancer would have little impact on PCF and its peers because active surveillance and low-risk prostate cancer simply are not visible to the big charities.

As a courtesy, I requested a bit more comment from the foundation a few weeks ago but haven’t heard back. I don’t think they could add much anyway.

Admittedly, I have had some run-ins with the Prostate Cancer Foundation.

When I was involved in organizing Active Surveillance Patients International, about five years ago, I met with Howard Soule, chief science officer of the foundation, in hopes of persuading the organization to help the fledgling ASPI with a donation. We planned a big international meeting in Iceland with the top experts on Active Surveillance.

Why did Soule agree to meet?

He was just sniffing around. I have heard about this tactic from others who have started support groups for prostate cancer. PCF wants to know what its seeming competitors—small as we were—were up to.

In the end, I held my hat out. Soule said in effect in practical terms but dulcet tones: “If I offered you money, they’d fire me.”

Funny, in a way. But I literally was shut down, used, gasping for breath and feeling dejected and ridiculous for even considering asking PCF for money.

Over the years, I have concluded that the Prostate Cancer Foundation needs a more accurate name, like the Metastatic Prostate Cancer Foundation or the Advanced Prostate Cancer Foundation. Let’s have some truth in advertising.

As The Who said, I learned my lesson and won’t be fooled again. You shouldn’t either.

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The Advanced Prostate Cancer Foundation and its future

By Howard Wolinsky

The Prostate Cancer Foundation’s name suggests it covers the full spectrum of prostate cancer.

It really doesn’t. PCF may hold programs and write articles that touch on lower-risk prostate cancer. They may share a plant-based recipe or tips on the benefits of brisk walking.

But patients like us on Active Surveillance are not a priority for PCF. (

Not yet, anyway. Read on.)

PCF has its hands full, raising research money for advanced prostate cancer.

Patients with lower-risk prostate cancer, Gleason 6 and favorable Gleason 3+4, on Active Surveillance are not in PCF’s playbook, though we constitute roughly half of prostate cancer cases. Still, PCF is happy to accept our checks.

Over the years, I repeatedly asked PCF how much of their funding is devoted to research on lower-risk patients. PCF repeatedly has told me that they don’t track their expenditures that way.

There is no denying that PCF focuses on patients, like its founder, Michael Milken, who have advanced cancers. The need is great. Cases of advanced prostate cancers are on the rise, according to the Centers for Disease Control.

PCF has successfully developed treatments that can extend the lives of the small proportion of men (with metastatic and advanced prostate cancer. PCF has even gotten a piece of the Nobel Prize because it funded immunology research by Dr. Jim Allison at MD Anderson.

(Michael Milken, PCF founder.)

(Note: Milken, probably best known as the “junk bond king,” has changed the landscape of disease philanthropy, making it more entrepreneurial and getting fundraisers to think outside the box. He left prison in 1993 after 22 months behind bars for insider trading. Then, he was diagnosed with PCa.

(In 2020, President Trump pardoned Milken, who he said had “done an incredible job for the world with all his research on cancer” and that “He’s suffered greatly. He paid a big price.”)

Let’s look at PCF’s books.

In 2021, the latest year for which records are available, PCF raised $53 million, up from $36 million in 2020, per its federal tax form. It spent $13.3 million that year on innovative research.

PCF makes its objectives clear on its tax form: PCF “accelerates the world’s most promising prostate cancer research with the goal of discovering and developing” new therapies. They confirm that “priority is given to high-risk, high-return projects with the greatest potential to improve survival and overall quality of life for men with prostate cancer.”

That’s not us. This statement stresses that advanced cancer, not lower-risk cancer, are PCF’s sweet spot.

Hence, as I mentioned in the previous story. the more accurate name for PCF would be Metastatic Prostate Cancer Foundation or Advanced Prostate Cancer Foundation. Would that new name help or hurt fund-raising efforts?

One of the highest-level prostate experts in the U.S. told me he estimates that PCF devotes at most 2% of its budget to AS and lower-risk disease--even though AS patients like you and me are donors to the foundation, assuming PCF is looking out for our interests. This doctor told me he and others have been bending Milken’s ear to ask PCF to devote more attention to research relevant to lower-risk patients.

Other leading researchers in the area have told me they recognize PCF’s dilemma, but they remain mum because, on their way up, as young investigators, they nursed on the PCF research funding teet. PCF buys a lot of loyalty with this strategy.

Lower-risk patients have been a large but low-profile group regarding funding in Big Cancer. We have not until recently been squeaking wheels. I have tried to be one myself. Most of us probably just want to live our lives and probably not even think about or share our cancer diagnoses.

But there’s a lot PCF could do to help us by investing in research.

(By the way, PCF isn’t alone in ignoring low-risk disease. I have served as a “consumer reviewer” for the U.S. Department of Defense Congressionally Directed Medical Research Programs .

(CDMRP states explicitly grant “applications must be directly related to prostate cancer with a high risk of death, including high-risk and very high-risk localized disease and metastatic prostate cancer. … Applications should not focus on active surveillance, low-risk and intermediate-risk prostate cancer, and/or biochemical recurrence. I know some docs who are trying to change this. But it would liuterally would take an act of Congress I guess,

(Sadly, the same playbook as PCF. And this time it's our tax dollars. FYI, in my critiques, I included potential benefits to AS that studies I recommended. Maybe that’s why I was not invited back.)

To PCF (and DOD, too): Why not research why so many of us leave active surveillance without an increase in our Gleason scores a few years of being diagnosed? What can be done to keep us on AS? How can MRIs be used more effectively to avoid biopsies?

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Sweet Movember

Movember is another story. The Aussie men’s health organization is famed for its prodigious fund-raising abilities and mustache-growing contests in November.

Movember and the Prostate Cancer Foundation, until recently, appeared to be joined at the hip.

Over the past decade, Movember has given $50 million to the Prostate Cancer Foundation to fund its research. 

But Movember has been changing course regarding prostate cancer, starting to heed low-risk disease and Active Surveillance.

I used to respond to their fund-raising letters with emails that pointed out how a mustache-growing fundraiser essentially for PCF is not the same as advocacy for low-risk patients.

A Movember official told me last year that the organization now recognizes that it needs to advocate for AS.

I know they have been doing just that. I joined a group of several patients last year from North America and Europe who worked with Movember on a consensus paper designed to guide their research efforts on AS.

Maybe I’m being too much of an optimist. But I hope that Movember will persuade PCF to change course, even just a smidge. Movember should have a lot to say about how its many bucks are spent.

Maybe Movember can influence PCF to get involved in researching issues affecting patients with lower-risk prostate cancer.

Meanwhile, I urge you to continue sending your checks to PCF, but why not include a note asking them to do more for lower-risk prostate cancer?

Catch some webinars

End Prostate Cancer Awareness Month with some educational webinars.

—Active Surveillance Patients International (ASPI) sponsors a free webinar on lifestyle research and low-risk prostate cancer from 12-1:30 p.m. Eastern, Saturday Sept. 30. The program includes top prostate researchers from UCSF. Register here for “Applied Research and Lifestyles and Low-Risk Prostate Cancer: https://zoom.us/meeting/register/tJwvdOGoqjwuE9CC8AI45nYdsj63e-iUnop6

—Want to learn about focal therapy? Listen to AS pioneer Dr. Laurence Klotz: https://ancan.org/webinar-is-focal-therapy-right-for-your-prostate-cancer/

—Lifestyle? Catch ASPI’s webinar with Dr. Stacy Loeb, of NYU, on lifestyle factors, such as diet. Great talk on plant-based diet: https://aspatients.org/meeting/as-101-program-on-diet-and-nutritional-lifestyle/