(Editor’s note: We had a terrific turnout to hear about decisional regret about the choices made to treat prostate cancer. Christopher Wallis, MD, of the University of Toronto, made a powerful point about taking our time—we do have it with prostate cancer—to decide on which approach to take. I’ll write more about this soon.
Meanwhile, I need your help. Mi compadres from major support groups and I are organizing a landmark webinar on the future of AS at 11 a.m. Eastern on April 22. PLEASE, can you register at https://bit.ly/3ueT9bc.
Join us if you can. If you can’t, you’ll get a link of the recording to see the docs who created—even named—active surveillance in North AMerica and Europe. See flyer below.)
By Howard Wolinsky
Can a cancer diagnosis be a good thing? Yes, especially if it’s low-risk prostate cancer.
Of course, it’s best never to be diagnosed with cancer. That’s a given.
But if you’re going to be diagnosed, you could do no better than being diagnosed with very-low to low-risk Gleason 6 prostate “cancer.”
To begin with, experts can’t even agree on whether a Gleason 6 is cancer anyway.
(Sidenote: I have a report on Gleason 6 and why it shouldn’t be considered '“cancer” (I deliberately use the quotation marks because it is faux cancer) appearing soon in the Journal of Clinical Oncology. I wrote it with my former urologist Scott Eggener, MD, of UChicago, and other leaders in the field. Also, last year, I wrote “Is it really cancer? -- Movement builds to classify Gleason 6 prostate lesions as nonmalignant” for MedPage Today last year: https://www.medpagetoday.com/special-reports/apatientsjourney/90601)
The doctors may argue about this. Pathologists in general insist Gleason 6 resembles a cancer, while many urologists insist it doesn’t act like one.
There seems to be a consensus that Gleason 6 virtually never metastasizes.
With Gleason 6, you can go on active surveillance and live the rest of your life with “cancer” and not die from it.
(I’ll drop the ironic quotation marks now. Just imagine they are there when I mention Gleason 6.)
There’s a social aspect to this, too. My friend Mark Lichty, with whom I co-founded Active Surveillance Patients International five years ago, likes to describe his very low-risk cancer as a “blessing.”
He doesn’t mean that he enjoys all the biopsies, MRIs, and the like, which Mark generally avoids. He has followed his own drummer for the past 16 years when it comes to testing.
He’s not a masochist. (As far as I know.) He means he has made many friends and has a feeling of making a contribution to the PCa community with his work in ASPI. He even gave a church sermon on this to share his joy in Gleason 6. (Really.)
I know what Mark is getting at. The unnecessary treatment of Gleason 6 led me to become an advocate for the many with low-risk disease who need not be going under the knife or being zapped with radiation and facing serious side effects, such as impotence and incontinence.
On the beat for TheActiveSurveillor.com recently, I ran across a podcast from Dr. Geo, a naturopathic physician specializing in urology and prostate cancer at NYU Langone Medical Center. Geo is a must-read at https://drgeo.com/
(Dr. Geo)
Geo is a knowledgeable and articulate natural health practitioner who knows there’s gotta be a better way than men face now.
I especially like his upbeat take on Gleason 6.
He said in his podcast: “I am a huge fan, and I simply love that diagnosis, Gleason 6 prostate cancer. Now, you’re saying, alright, now I really know this Dr. Geo guy is crazy. He’s just bonkers. How can a cancer diagnosis be a good thing? How can this guy love a cancer diagnosis? This guy – you know what? I’m not listening to this guy anymore. Right?”
(I insist: Listen to Dr. G. He’s not bonkers.)
Geo said: “So why is a Gleason 6 a good thing, potentially? The reason why a Gleason 6 is a good thing is because most people that are diagnosed with prostate cancer with a Gleason 6, most of them never really die from prostate cancer. It’s called a low-grade or low-risk disease, low-risk prostate cancer, where it’s likely not going to take you out.”
Even though a Gleason score of 6 seems to suggest you’re well onto your demise, halfway into the grave. Geo assures you you’re not.
A Gleason 6 is actually the bottom floor in the skyscraper that goes up to Gleason 10. Geo said he has never seen a Gleason score below 6.
“The most common treatment option for [patients] with Gleason 6 is no medical treatment. It’s called active surveillance (AS),” Geo said.
I used to think of AS as a non-treatment, too. I thought it was like “Seinfeld,” a zen-like “TV show about nothing.”
But in almost 12 years (next year I celebrate my Gleason 6 bar mitzvah), after a couple of dozen urologist visits, about 20 PSA blood tests, six biopsies, and two MRIs, I have reached a different conclusion about AS.
AS is not a free ride. It is highly medicalized. It can put you at serious risk, especially since transrectal biopsies can cause sepsis and other infections and rarely death.
In my view, non-treatment itself is a form of treatment. Like to not decide is to decide, per theologian Harvey Cox.
AS is a medicalized management strategy that keeps you out of the OR and the radiology suite while keeping your sexual function intact.
Geo contrasts AS with the older approach of “watchful waiting,” where you actually do nothing. Many people confuse AS and WW, but they are different approaches.
Laurence Klotz, MD, the University of Toronto researcher, who dubbed active surveillance as a management strategy 30 years ago, said that a new approach was needed. He said there had to be a better option than watchful waiting, which represented “too much watching and too much waiting.”
Active surveillance is for the more action-oriented patient who wants to try to do something -- or at least feel like he is -- about his low-risk Gleason 3+3=6 (and also many patients with favorable intermediate-risk 3+4=7).
The Gleason 6 diagnosis gives a patient an opportunity to become more engaged in his health, wresting mood and ‘tude control from his lesion.
It’s a time when many start making lifestyle changes, such as exercising and improving their diets and taking nutritional supplements in hopes of altering the course of cancer.
(The verdict on the impact of these approaches is mixed—though I was in a conference recently with a high official in the National Cancer Institute who said researchers have been searching for dietary benefits on prostate cancer for the past 20 years and came up empty.)
(I think this Hail Mary approach is found in patients with all cancers, not just Gleason 6 patients. Routine consumption of broccoli and tomatoes can’t hurt and might just help.)
Geo said that the Gleason 6 diagnosis can be a wake-up call. With Gleason 6, you get a chance to intervene early.
The naturopathic physician said his patients tell him: “This (Gleason 6) diagnosis is a blessing. I’m actually healthier than I’ve ever been before. And let me tell you something else, Dr. Geo … I’m in better shape than ever and all these other things that I used to have … migraines or lower back pain or high cholesterol … [have] gone away or [are] down only with natural approaches! With the lifestyle you prescribed. I’m leaner. I lost some weight. Whatever the case may be, people that are diagnosed with Gleason 6 who then apply lifestyle protocols will not only help them, I think, with lowering the risk of prostate cancer progression, but their overall health improves.”
As Lichty and Geo (me, too) would say, Gleason 6 diagnosis offers another gift: It’s an opportunity to reevaluate your life and gain new perspectives. You can focus on the important things in life and drop those petty annoyances.
Gleason 6 is a blessing for you — and all of us.
Don’t miss this AS program featuring top docs—including Dr. Laurence Klotz, who named AS; Dr. Peter Carroll and Dr. Peter Albertsen, who helped develop the approach, and Dr. E. David Crawford, who believes it’s time to move beyond AS. They will be exploring the future of Active Surveillance at 11 a.m. Eastern April 22.
Register here: https://bit.ly/3ueT9bc
This column runs on Substack. Apparently, they had a tech glitch that sent out the column twice. Sorry about that, This is beyond my control. You can ignore one. But please read the other. Howard
In January 2019, I had just finished a 20 month journey to lose 25 pounds and thought my physical would include all kinds of attaboys. Instead, the call came that my PSA had spiked and I should see a urologist immediately. A Facebook post and a couple days later folks all over the world were praying for a good outcome. The prayers were answered with a Gleason 6. Lots of reading and discussions later, and support from the Ancan team, when people ask how I am doing, my answer is that God is good plus a sermon on how we all need to take charge of our own healthcare and not merely follow any doctor's prescription. Howard - Thanks for all you are doing to spread the word and educate men on their prostate cancer options.