AS patients owe Dr. Todd Morgan a debt for his advocacy. Come see him in a free AnCan webinar on genomics and prostate cancer on July 31.

By Howard Wolinsky

As an Active Surveillance patient, you should know Dr. Todd Morgan, chief of urologic oncology at the University of Michigan (Go Blue!) and international expert on the genomics of prostate cancer.

In fall 2021, he was the last urologist standing, opposing his learned colleagues at the guideline-setting National Cancer Community Network (NCCN) who had knocked down Active Surveillance as the preferred treatment for low-risk prostate cancer and put it on par with radical prostatectomy and radiation therapy.

With the stroke of a fountain pen and a poll of the panel, NCCN reversed 30 years of AS progress.

That was the wrong message to send, according to patient advocates and our urologists.

[Note: Don’t miss Dr. Morgan’s presentation to AnCan on genomics on July 31, 2023. Register at to attend or to get the video link: https://register.gotowebinar.com/register/2818379687157097308 More details below.]

Morgan, as an NCCN panelist representing U of M on the Prostate Cancer Early Detection Panel, stood up alone for patients. He defended the 2018 guideline many urologists had fought for decades to recognize AS as the No 1 choice for men with low-risk prostate cancer. It was a low and unexpected blow.

Some other AS super-advocates. Dr. Daniel Lin, of the University of Washington, exposed the dramatic, unannounced change in guidelines in Twitter upon which he had stumbled in newly published NCCN guidelines. NCCN doesn’t formally announce its edicts.

Dr. Matthew Cooperberg, of UCSF, set off an unprecedented Twitterstorm to try to reverse NCCN’s position.

I helped expose this injustice in my blog in MedPageToday.

The headline was: “One-Word Change in Prostate Cancer Guideline Has Some Urologists in Arms.”

I also worked in the background as a patient activist/advocate, with Rick Davis, founder of AnCan, Jamie Bearse, then CEO of ZERO, and Mark Lichty, with whom I was a founder of Active Surveillance Patients International, to set things right in the guidelines.

We won. That also was precedented, a proof of concept for the role of patient advocacy and activism can play:. A new kinda active for Active Surveillance.

We helped Todd Morgan set things right.In the end, NCCN, made up of representatives of more than 30 centers of excellence for prostate cancer, reversed itself.

Two months later, NCCN reversed itself and restored AS as the preferred management approach for lower-risk prostate cancer recommended in its guidelines, which many urologists consider their Bible.

AS doctors and AS patients, for the first time ever, tackled and corrected a wrong done to patients like us.

It was a stunning victory for AS for which Morgan had argued alone at NCCN.

The headline of my follow-up story in MedPage Today was “NCCN Reverses on Guideline Change for Surveillance in Prostate Cancer”

In my mind, Morgan is right up there on the Mount Rushmore of righteous urologic experts, including Drs. Laurence Klotz, Peter Carroll, Ballentine Carter, Peter Albertsen, and Gerald Chodak, who developed and deployed AS to spare men like us from unnecessary aggressive treatment.

In fact, one of Morgan’s more artistic (and also anonymous) patients put together the Mount Rushmore of heroes of AS. (Sorry, Drs. Albertsen and Chodak, no room at the Mount. (ASPI just recognized Dr. Albertsen with an award named in honor of the late Dr. Chodak, ASPI’s first medical advisor.)

(Left to right, Drs. Klotz, Carter, Carroll, and Morgan.)

You can see Dr. Morgan in action at the AnCan webinar scheduled for 8 p.m. Eastern on July 31.

To register for the program entitled “How and why PCa genomic tests work ... What's Inside the Black Box?", go to: https://tinyurl.com/ancanpcagenwebinar

Please come. If you can’t come, sign up and we’ll send a link to the video on a subject we all need to know more.

The program is aimed at the full spectrum of patients with prostate cancer, from low-risk to high-risk.

Morgan will cover the difference between inherited and somatic testing, who should undergo genomic testing, and his randomized trial comparing the leading genomic tests, Decipher, Prolaris, and Oncotype DX.  

At support meetings at AnCan, we discuss this topic weekly. Patients, not surprisingly, are confused between our inherited genes (germline testing) and genomics (the DNA in our cancers. Two different things.

Please send your questions, comments and feedback to: joeg@ancan.org

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A humble plea from a hungry (and elderly) grad student/editor

By Howard Wolinsky

I am about to make one of those annoying pleas for funding you hear from public broadcasting.

(SNL makes fun of public TV pleas for donation.)

I am in sort of an analogous situation. So here goes.

I run The Active Surveillor as a free pub for patients like us.

Free but … I still have expenses: payments to the publisher and bank fees (about 15% off the top) and mostly the expense of special software such as ZOOM and transcriptions of interviews. Free but … I volunteer many hours in my my week to find what’s new news in AS. Online publications may seem free, but they’re not.

I’m about $2k in the red. My modest goal is to break even.

You can help by becoming a paid subscriber. Again, you don’t have to. But much of the information published here is not readily available elsewhere to readers.

(To get a sense of what The Active Surveillor is up to, read my year-end review: )

Friends suggested I create one of those private-subscriptions at a high price of thousands a year. I won’t do that. I don’t want to withhold information. I do want to break even.

I promised never to require paid subscriptions. I stand by that.

But I am not opposed to paid subscriptions to help me offset the $2,000/year or so I am losing on this publication.

I am approaching 1,000 total formal subscriptions plus 2,000 on up to 3,000 readers per issue. (BTW, I have no idea where those extra readers float in from. But everyone is welcome to this AS community.)

Only about 100 are paid subscriptions. I am grateful for this support.

But my personal expenses are increasing as I go for a Master’s degree in public health from the University of Illinois at Chicago’s School of Public Health in August. (Go Flames!)

So please, if you can, help a hungry (and elderly) grad student seeking knowledge on behalf of AS patients. Click below if you want to help.