Rick Steves reveals he has "good kind" of prostate cancer. But if that's so, why is he undergoing prostate surgery next month?
Inquiring minds need to know
By Howard Wolinsky
A friend of yours tells you he had been diagnosed with prostate cancer. And then he informs you his doctor had assured him that "if you're going to get cancer, this is a good kind to get, and careful scans show no sign of it having spread."
What would you say?
Maybe, something like this: “Good news. So you’re on Active Surveillance, close monitoring of your cancer? Congrats,”
Insteadm your friend said: “No, I’m having a prostatectomy in late September. I should be back on feet by late October. My doctor cleared me to complete a couple of programs in France.”
Well, that sounds posh for most of us—going off to France..
But of course not travel writer and PBS TV personality Rick Steves, who has joined us on a new sort of trip— the so-called “prostate cancer journey.”
Steves put a positive spin on it:"I find myself going into this adventure almost like it’s some amazing, really important trip.”
PBS celeb and travel writer Rick Steves now joins on a prostate cancer journey.
Steves is a newbie, a stranger in a strange land.
But he’s not alone. The cruise ship already is brimming with 3 million of us living with prostate cancer, most with low-risk “cancers.” The American Cancer Society estimates that nearly 300,000 Americans will be diagnosed with prostate cancer this year and about 35,000 will die from it.
Welcome aboard, good ship, USS Prostate Cancer, Rick. Your journey is an important one—and potentially could influence decisions men make about their personal prostate cancer journeys.
I heard from a half dozen fellow AS swabbies wondering whether Steves might have qualified for Active Surveillance.
If Steves has the “good kind” of prostate cancer (Gleason 6 or favorable Gleason 3+4), why didn’t he go on Active Surveillance, which the major guideline organizations (American Urological Association and the National Comprehensive Cancer Network), recommend as the first choice in prostate cancer management.
There’s no way to know about Steves short of contacting. So I wrote Steves this note to in hopes of offering guidance to my fellow traveler should he need it or want it. (You can drop Steves an email at rick@ricksteves.com.)
Rick,
I feel that I know you. You have guided--via your TV programs and your books--many of my trips around the world. I am grateful to you for the solid advice you provided.
Now that you are moving through terra incognita, I hoped to return the favor and offer you some pointers on the "prostate cancer journey."
I have been on this journey for 14 years in December. Initially, a local urologist told me I had cancer and needed to undergo surgery like "next Tuesday/"
Instead, I got a second opinion at the University of Chicago. The urologist there said he thought I didn't need surgery,
He recommended a different management approach, Active Surveillance, close monitoring of the cancer. In 2010, only 6% of us opted for Active Surveillance. Now more than 60% follow this road and avoid the "life-style" side effects from surgery and radiation, including continence and incontinence. That's an improvement, but far below the rates of 95% and above in Sweden and the United Kingdom.
(Here a couple articles about my journey:
NY Times columnist Jane Brody's interview with me about the need to consider surveillance before undergoing surgery:
STATNEWS on the "gift" that keeps on giving: https://www.statnews.com/2022/01/11/active-surveillance-for-prostate-cancer-the-gift-that-keeps-on-giving/ )
Your note about your prostate cancer experience made me wonder about whether you're on the correct path. And you may be.
You said your doctor said: "if you're going to get cancer, this is a good kind to get," and scans have shown so far there is no sign of it having spread.
That sounds like great news. But I wonder if you got the "good kind," whether your doctor offered you the option of Active Surveillance, which the leading guideline writers (American Urological Association and the National Comprehensive Cancer) recommend as the first choice over surgery and radiation.
Did you get a second opinion on whether surgery is your best option? Some of the leaders in Active Surveillance are based at the University of Washington. {Steves lives in a Seattle suburb.]
Can you share your PSA trends, Gleason scores, PI-RADS from MRIs, and any biomarker or genetic/genomic test results?
I'd be happy to talk to you and/or refer you to the US Too support group in Seattle and also virtual groups, such as AnCan Foundation's Virtual Support group for Active Surveillance, or Active Surveillance Patients International (ASPI).
ASPI is holding a webinar on Saturday new artificial intelligence tools to guide decisions on active surveillance vs. aggressive treatment,
Also, check out my newsletter, TheActiveSurveillor.com for details on this and other aspects of Active Surveillance.
Best to get second (or third) opinions from top docs and support from peer groups before embarking on this journey.
Howard Wolinsky
TheActiveSurveillor.com
Typically, it’s hard top get past the gatekeepers and reach celebs. Managers, agents, and assistants can keep celebs “safe” from fans.
I commend Steves’ for having a responsive staff. I exchanged emails with two of them in a matter of hours. But didn’t get past the Gardol shield.
If I had a real conversation with him, I would ask as minimum:
—What is the trend of your PSA? What is Gleason score? How many lesions do you have? What is your PSA density? And your PI-RADS score?
—Did you get a second opinion on your pathology?
—Were you offered Active Surveillance as an option?
Steves could well have been on the right path for himself and he certainly is entitled to his privacy.
I think Steves’ staffers may have missed the point of my writing him:
Hi Howard,
Thank you for reaching out with this information for Rick. He is grateful to you for taking the time to share your story and wishes you all the best in your continued recovery.
Keep on travelin’!
Kind Regards,
Kaitlin
Customer Support
I responded:
Kaitlin,
Thanks. I appreciate your note,
Is there aby way to get some response from Rick regarding his prostate status?
Ultimately, it's his business of course.
But he is now part of the prostate cancer community and, by definition, he is a role model.
Howard
Finally:
Hello Howard,
When Rick feels it's appropriate he will be sharing his journey with this disease. It's hard to keep him down for long but for now he will be dealing with recovery.
Kind regards,
Stacy
Customer Support
Steves said he is maintaining a positive attitude and is "looking forward to many more years of happy travels, exciting collaborations, and beautiful friendships."
We’ll be looking for him along the trail and wish him the best
Still time—minutes away—to attend webinar on Aug. 24 on AI and the evolution of AS
By Howard Wolinsky
Artificial Intelligence (AI)is being used to read pathology slides and MRI scans, often getting better results than the medical experts. Now AI is making its moves on Active Surveillance, offering guidance on whether patients should go on AS or undergo aggressive treatment.
Active Surveillance Patients International (ASPI) is holding a webinar entitled Evolution of Active Surveillance at 12-1:30 p.m., Saturday August 24. Register here: https://zoom.us/meeting/register/tJ0tfu2urTIjHtZZJwRcRF6a-h426tLw9stk
The program features Leonard Marks, MD, professor of urology at David Geffen School of Medicine at UCLA, whose database of 5,000 patients was used to develop Avenda Health's Unfold AI system. Marks said the system may be able to predict the durability of active surveillance using an AI map of prostate cancer to determine how big a lesion is.
Also featured at the meeting are and Scientific Director, Meghan Tierney and Medical Science Liaison, Mia Li-Burton, for Artera, the developer of cancer diagnostics.
Earlier this year Artera released its Artera AI Prostate Test that spares men—up to 60%— avoid hormone therapy and its side effects. This was the first AI test of its kind.
Artera earlier this month released an updated version of its test for patients to learn about the predicted aggressiveness of their prostate cancers to help guide the decision between AS and aggressive treatments.
Caregiver vs. care partner survey
I am still trying to sort out whether to use caregiver vs. care partner to describe who we patients with chronic disease obtain support.
Can you weigh in at: So weigh in here: https://forms.gle/Ezv9cmTGMe9CG4VC8
See you in September in LA at PCRI
By Howard Wolinsky
The Prostate Cancer Research Institute’s 2024 Prostate Cancer Patients & Caregivers conference will be held in-person for the first time since 2019.
The popular patient-oriented meeting switched to virtual in 2020 because of the COVID-19 pandemic. But it’s back in person, Sept. 7-8 at the Westin Los Angeles Airport.
I’ve been invited to co-moderate a support group with Bill Manning, the new executive director of Active Surveillance Patients International, at noon PST on Saturday, Sept. 7. I also will moderate an “Ask the Experts” session at a red-eye session at 8 a.m. PST on Sunday, Sept. 8, with a real expert, AS pioneer, Dr. Laurence Klotz, of the University of Toronto.
Register here.
PCF Canada holding webinar on whether Gleason 6 is a cancer
The Prostate Cancer Foundation Canada and its Active Surveillance Support group are observing Prostate Cancer Awareness with a program on whether Gleason 6 lesions should even be considered a cancer at all.
Dr, Alejandro Berlin, a researcher and radiation oncologist at Princess Margaret Cancer Center in Toronto, will be the featured speaker at 7:30 pm Eastern on Thursday, Sept. 12. Register here: http://bit.ly/PCAM24-AS
Ale and I are members of the Gang of Six (on Gleason 6) that have been calling for renaming Gleason 6 as a non-cancer. We coauthored Low-Grade Prostate Cancer: Time to Stop Calling it Cancer, the most-read article in the Journal of Clinical Oncology in 2022. It sparked a controversy—and more papers. We will be launching a study soon focused on African American and Latino patients.
Unsolicited testimonial
Good Morning Howard!
Thank you for your unwavering support of PCa patients and their families. You are amazing!!
With appreciation,
Leanndra
Good job Howard.
Yes, this fact is well known - if you have been diagnosed with one type of cancer you are at greater risk for developing another different type of cancer. Not counting the G6 of course as this is a bogus cancer because it's biological pathways for cancer development and spread are INACTIVE. Therefore, this Gleason 6 pseudo-cancer does NOT need diagnosis, monitoring or treatment.
And, your reader Matt is absolutely correct. The business of prostate cancer is about exaggerating cancer risks, exploiting false hope and exploiting false promises. Instead, the recycling of prostate cancer misinformation is a $23.2 billion industry that steers countless men only towards harm with so-called "testing" and "treatment".
Sadly, the prostate cancer community is fully aware that PSA testing FAILS to save significant numbers of lives.
And, they are also fully aware that - when the 15 year treatment survivals were compared for prostate cancer surgery, radiation and NO treatment - survival was the same for all 3 groups. That is - NO treatment is as good as the debilitating surgery for prostate cancer.
Physicians and government healthcare oversight agencies would do well to challenge their healthcare recommendations with a simple question - where is the irrefutable and reproducible data supporting this recommendation?
I was diagnosed with prostate cancer in July 2023 beginning with a DRE. I am 74. My PSA had never been above 2.7 and I have been testing it regularly. It is still within normal range. A targeted TRUS biopsy tested 2 lesions that had shown on the MRI and my urologist performed 12 other random biopsies at the same time. One targeted lesion was Gleason 3+4 and the other one was less than 7. The other random biopsy samples were all negative. The Gleason 7 was determined to be intermediate favorable and I had a Prolaris test done that came back with an indication I was in the active surveillance range. My urologist and I agreed to go that route, which I was thankful for. I had done a lot of research, mainly through PCRI videos with Mark Scholz. I had also read some of your helpful information. This summer I had an MRI done, which was part of my active surveillance protocol. It came back with high suspicion for lymph node metastasis in the groin area and two osseous metastases on the clavicle. Naturally, I was somewhat stunned that the prostate cancer could possibly have spread this much in a year, knowing that I had chosen, properly, active surveillance the summer before. A biopsy on a groin lymph node (the most enlarged one) showed metastasis. And a PET scan showed groin lymph node metastasis and two small clavicular metastatisized lesions. However, based on the lymph node biopsy tissue sample and analysis, the indication was the metastasis was nearly impossible to have originated from the prostate cancer. So at this point the oncologist has been unable to determine a primary origin cancer causing the metastasis. She has sent the biopsy tissue in for Next Generation Sequencing test to see of that will help locate a primary cancer. I write all this to indicate that the active surveillance seemed to work in the first year of testing as was indicated in all the tests from last summer. But coincidentally and unfortunately, the MRI protocol for prostate cancer surveillance revealed a metastasis almost certainly from another undetermined primary cancer. Have you (or any of your followers) ever known of a situation like mine where the active surveillance protocol MRI showed metastasized cancer? At least the protocol MRI showed a cancer I was unaware of so I can work on that, even though it has metastasized in apparently a very short time without me knowing of any primary cancer other than prostate. I am seeking a second opinion at a large NCI cancer center. I’ll even go for a third if I think it necessary. Thanks and all best wishes on your very meaningful and helpful service.