Travel guru Rick Steves' prostate cancer 'adventure' continues here
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“Regardless of your journey, you can put a little pilgrim in your travels and find your own personal jubilation.”—Rick Steves
By Howard Wolinsky
It’s been a week now since travel writer and PBS personality Rick Steves announced he has joined us on the prostate cancer “journey.”
Steves, 69, obviously wants us to know he’s aboard the cruise ship USS Prostate Cancer. After all, he tweeted it publicly.
And Steves, a travel advocate/philosopher and tour operator, put a positive spin on the diagnosis; "I find myself going into this adventure almost like it’s some amazing, really important trip.”⅘
Trust me, Rick, just the m:76ention of the “Big C” diagnosis is a life-changer, likely more so than taking a holiday in France.
Steves announced online: ““I have been diagnosed with prostate cancer. My doctor assures me 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.”
Sounds promising. Seemed to many of us that Steves might even be a candidate for Active Surveillance (AS), close monitoring of prostate cancer, the top recommendation for those of us diagnosed with low-risk to favorable intermediate-risk prostate cancer,
But then the other shoe dropped. Rick announced he is planning prostate surgery late next month—after doing a couple programs in France. What’s up with that?
It’s unclear, as one reader pointed out, whether Steves’ “good kind” of cancer means he has low-risk-to favorable intermediate-risk prostate cancer cancer. Another interpretation, the reader said, is that hios “good” prostate cancer is unlikely to kill him, compared to say lung cancer.
“Travel is rich with learning opportunities, and the ultimate souvenir is a broader perspective.”—Rick Steves
One of the top patient advocates I know, himself a patient with advanced prostate cancer, noted: “When I thought about it, [Steves] would not have said he had the ‘good kind’ if he was high risk; and probably not if he was unfavorable intermediate. So either way, I think you interpreted it correctly.”
“Travel is rich with learning opportunities, and the ultimate souvenir is a broader perspective.”—Rick Steves
We may never know the truth unless Steves shares his story in full.
So I wrote Steves a note, as a fellow patient, a fellow cancer traveler, a medical journalist, and also a fan, His videos and books and his company have help guide me on trips to Italy, Greece, and elsewhere. His tour group recommended local guides and pointers on packing.
He seems like my friendly neighborhood travel agent, even though he lives in the Seattle area and I live in Chicago.
You can read my letter here. I hope came off as polite and respectful. (Let me know what you think. I have a short reader survey on this and also your views of the newsletter: https://forms.gle/6gM9axJBL2xtuNJc6
I received dozens of emails about Steves.
***
The first one caught me by surprise. It was from W. (I will stick with first initials here to protect the innocent).
He intentionally—or maybe inadvertently—echoed the sentiments of Democratic VP candidate Gov. Tim Walz, who says when it comes to our neighbors, “mind your own damn business.” W. used that phrase and demanded that I stop asking “rude” questions.
I told W. I couldn’t stop. that as a journalist, I ask “rude” questions for a living. But I do try ask rude questions politely.
Also, beyond wearing my journo hat, I should note:
—I am a fellow prostate cancer patient on AS.
—My real mission as an advocate/activist is to try to ensure that newly diagnosed prostate cancer patients get complete information about their options. A urologist tried to rush me into the OR in December 2010. Instead, I got a second opinion from an academic physician who said I was the “poster boy” for AS.
I have lived for nearly 14 years so far on AS. I don’t want to see other patients get pushed into treatment and side effects they don’t need.
—While moderating support groups, I don’t urge newly diagnosed patients to go on AS. I suggest they consider their options and follow their own bliss.
—I don’t write to strangers out of the blue and ask rude questions—though I may do that to celebs.
“Be fanatically positive and militantly optimistic. If something is not to your liking, change your liking. I would like travelers, especially American travelers, to travel in a way that broadens their perspective, because I think Americans tend to be some of the most ethnocentric people on the planet.”—Rick Steves
Steves likes to promote European values and European travel. Maybe he ought to investigate how prostate cancer is managed in Europe, where doctors typically are slow to diagnose low-risk cancers and slow to do even offer PSA testing for fear it will lead to the sort of pandemic of overdiagnosis and overtreatment of prostate cancer that took place in the U.S.
40% of low-risk patients (Gleason 6) in the U.S. vs. fewer than 5% in Sweden and U.K. opt to be treated for a lesion that some urologists don’t consider to be a bogus cancer,
“I travel around the world in a way that tries to open my mind and give me empathy and inspire me to come home and make this world a better place.”—Rick Steves
Meanwhile, as W. and Walz advised Mind our own damn business.
When she spoke at the DNC last week here in Chicago, Oprah Winfrey offered a different sort of neighborly advice. Sometimes, neighbors need to intervene.
The media mogul/talk show queen said: “When a house is on fire, we don’t ask about the homeowner’s race or religion. We don’t wonder who their partner is or how they voted. No, we just try to do the best we can to save them. And if the place happens to belong to a childless cat lady, well, we try to get that cat out too."
From what I read, I thought Steves’ “house” might be on fire and offered a helping hand to my transcontinental neighbor. I thought by asking Steves some questions, if he were open, I could potentially help him and others, Oprah-style.
***
Also, I take a slightly different position with high-profile patients with prostate cancer like Steves.
Earlier this year, I wrote a petition signed by others involved with advocacy for a prostate cancer patients, U.S. Defense Secretary Lloyd Austin. We called on Austin, already under fire in Congress and the media, to open up and help other patients and stop being secretive about his prostate cancer.
"I should have told the president about my cancer diagnosis, and should also have told my team and the American public," Austin said. "I take full responsibility. I apologize to my teammates and to the American people."
He finally got on board on going public with prostate cancer with his fellow military leaders, Generals Colin Powell and Stormin’ Norman Schwartzkopf,
(Still, a couple readers gave me pushback and urged me to mind my own damn business. Are we detecting a theme here about the tension between privacy and the right to know?)
Again, Austin is a public figure. He ultimately couldn’t hide from Congressional hearings on what happened while he secretly was being treated surgically for his cancer.
I thought that if he shared his experience, rather trying to run a anti-terrorist war from his hospital bed, maybe he could help other patients, especially other Black men who face increased risks from prostate cancer.
Austin eventually, in a press confererence, owned up to how his diagnosis had been a “gut punch” and his instinct was to hide his diagnosis. He acknowledged his responsibility to other patients. In my opinion, it was the right thing to do—though he didn’t have to do it.
***
Of course, Steves is entitled to privacy if he wants it—but don’t forget he announced his diagnosis publicly—and he can tell me or other Buttinsky to mind our own damn business. However, when you're a an influencer like Steves, I feel you should respond to those rude, personal questions, especially if the answers might help their followers.
As a prominent person, he has many privileges and also a bully pulpit. He may end up helping other patients in the same situation.
I am coming--I hope--from a good place. I'd like to understand why Steves made his choice, wondered whether he was offered surveillance offered, did he get a second opinion, etc.
I also hope Steves is getting complete information on his options since his story is confusing,
“Travel like Gandhi, with simple clothes, open eyes and an uncluttered mind.”—Rick Steves
***
So I dipped further into my inbox.
One reader, an attorney with advanced PCa, suggested that I interpreted Steves correctly and “Steves created the ambiguity.” He added: “You gave it your best effort and a great opportunity for Steves to take advantage of your experience and knowledge. It’s his loss. The sad thing is it’s his staff’s purported protection of him that may result in his harm.”
A moderator of a prostate cancer advocacy group shared his impressions: “Maybe Rick is at the phase of this where he wants to communicate (and believe) only the optimistic part of his doctors’ message. Plenty of time to worry later, might be the thinking. Also, [he] might not want to concern his bosses at PBS, at least not until it would affect his ability to churn out those travel episodes.”
He added: “The assumption you make is that [Steves has] Gleason 6 or favorable 7 (3+4). On the other hand, his doctors might be optimistic about his 4+3, 4+4, or Gleason 9. Perhaps they are telling him they think it’s localized and that they can get it all via prostatectomy.
“We don’t know enough about Rick Steves’ case. Nor can we expect every famous person who shares his PCa diagnosis to release the totality of his medical records to the public. Plus, he might not be ready right now to explain his surgery vs. AS decision.”
Many PCa patients do go public like Elton John and Rod Stewart. However, we don’t hear much about A-listers on AS.
Another reader, a retired college professor said: “Rick S. is a public figure and his public announcement of PCa is available to everyone who can read. You did not TELL him what to do. You just asked the important question why he would decide on a radical therapy when his doctors' medical opinions seem to be favorable for AS.”
It’s true that many patients even on AS don’t share their status with their bosses for fear of “financial toxicity,” including not getting promotions at work and losing clients.
I have another bone to pick with prominent men on AS. Celebrities impact the public’s medical choices and conversations. They truly can be a force for good—or not.
An open First Lady Betty Ford impacted the national conversation on breast cancer treatment when she underwent a lumpectomy back in the 1970s. As did First Lady Nancy Reagan when she opted for a partial mastectomy.
In the 1990s, Senator Bob Dole (R-Kansas) got people talking about “those little blue pills” —and his side effects from prostate cancer—when he did a series of ads for Viagra.
***
Many high-profile patients have talked about having prostate cancer. Like actor Robert De Niro, singer/actor Harry Belafonte, singers Elton John and Rod Stewart. golfer Arnold Palmer. The list goes on and on.
But I wonder where are all the high-profile celebs with low-risk prostate cancer? Just because you walk a red carpet shouldn’t mean you rush in for surgery? The statistics don’t work like that.
Another reader told me: “Like you, Howard, I am frustrated by public figures [who] seem to rush to the surgery table, makes me think they are uninformed of the disease.”
“It’s never too late to have a happy childhood, and age only matters if you’re a cheese.”—Rick Steves
The list of celebs on AS is short. Bill Duke, actor and filmmaker, has been on AS since the 1990s. He’s a true pioneer.
British actors Colin McFarlane and Sir Ian McKellen are on the short list. Sir Ian for years tried to dodge questions about whether he was on AS but in the end reluctantly admitted he is a surveillor.
McFarlane has risked his career by being open about being on AS.
Pot advocate and comedian Tommy Chong, of Cheech & Chong fame, who was on AS at least for a while. (His situation is complicated since also had colorectal cancer.)
(Active Surveillance Hall of Fame: Clockwise from upper left, Colin McFarlane, Sir Ian, Bill Duke, Tommy Chong.)
***
Where are all the celebs on AS hiding? There must be more.
Read here about why high-profile patients opt for aggressive treatment: https://www.medpagetoday.com/special-reports/apatientsjourney/82226
***
A Steves’ staffer told me: “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.”
“Fear is for people who don’t get out very much.”—Rick Steves
Here’s to a speedy and full recovery. See you along the trail, Rick. The prostate cancer community is here to help whatever your decision.
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
My ‘deep dive’ on exercise and prostate cancer
By Howard Wolinsky
My MedPage blog covers how exercise has been shown to impact the prostate cancer.
Exercise expert Rob Newton, a leader in exercise oncology, tells his story from training [with the exception of MJ (Michael Jordan)] the NBA three-peat champion Chicago Bulls to jump higher and to run faster.
(Exercise researcher Rob Newton trained the Chicago Bulls with one exception. Make your best guess.)
Newton was inspired to switch directions in his career after his father Usher Newton died from prostate cancer and Usher’s doctors had advised the elder Newton not to exercise.
The Aussie researcher 27 years ago began his pioneering research on the role exercise plays in slowing down and preventing cancers, especially prostate cancer.
Jump over to MedPage: https://www.medpagetoday.com/special-reports/apatientsjourney/111703?trw=no
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.
Say hi.
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 new study soon focused on African American and Latino patients.