Rick Steves - travel guy and PCa - Advanced Prostate...
Rick Steves - travel guy and PCa
My only disappointment, he never discusses the details of his diagnosis… just some of the challenges of the “journey”.
I’m a fan of Rick Steves, but feel he should provide more information.
He makes light of a very difficult journey… his editorial on the sexual aspects is irresponsible.
In the end, it would help men if he provided more detail was realistic about the sexual impact and not so flippant.
And frankly, he’s not cancer free at this point.
why your need to be so critical???????
I expect more from a public figure
If a lot of folks see his post, he'll probably receive plenty of feedback good and bad. He seems like TOO smart a guy to buy the cancer-free from his Doc. Well, just human I guess.
Rick is providing this information to a broad audience that have concerns about his health. What he has shared is appropriate for that audience. Why be so judgy?
Being judgy about someone being judgy is a little ironic, eh? I, for one, demand the right to be judgy. I invoke the "Cancer card!"
(a page from my upcoming comic)
Kindly ease up on the guy. I trust that he shared all that he cared to share. In short, it was an important prompt from a public figure to stay on top of one's PSA. A great uplifting read IMO. But "cancer free" then why continue to test? We all know - it can come back.
What does the article say? I'm not on FaceBook, nor do I want to visit that place.
Rick Steves
1d ·
Update on my Medical Travels: I’m Cancer Free!
PSA 55 to PSA 0.09 to PSA <0.03…Yes! If you know prostate cancer, you know the happy story of those numbers — and the relief of hearing my surgeon say, “You can now consider yourself cancer-free.”
Life has been a whirlwind lately, with a new grandson, a New York Times bestselling book, and a president essentially declaring, “L'État, c'est moi” (“The state, it’s me”… in the spirit of Louis XIV.) But I’ve been on a deeply personal journey since last July, when I was diagnosed with prostate cancer. I promised I’d keep my traveling family posted — and I’m happy to now report that I’ve weathered the storm.
As a traveler, I’ve embraced my season of cancer as a journey: Setting off into a mysterious world not of my choosing with no prior experience or language skills. Engulfed in a furious storm, relying on the good ship SS Medical Industry and the steady guidance of Captain Lin (my surgeon), my sails were filled by the prayers and loving wishes of friends, family, and the caring public. (It’s amazing how prayers and good thoughts can become tangible when we need them to power us through the waves.)
For now, I’ve broken through the storm, and it’s smooth sailing ahead. But more storms are inevitable, and I’d be wise to keep in touch with the captain and take care of the ship. (This would be a nice place to segue into the value of continued government investment in medical and scientific research — but I’m trying my best to keep politics out of this post.)
I decided from the start to share my cancer story with my Facebook friends as a public service. But I never dreamed it would be so newsworthy… from CNN to People Magazine to The New York Times. People care. And when you go public, people come out of the woodwork to share their own experiences with cancer and to help and support you.
The message is important: I learned the hard way (almost the very hard way) about the importance of men being tuned into their bodies — especially older men like me, with a history of cancer in the family. I didn’t notice any symptoms and assumed my frequent trips to the WC were simply a consequence of my healthy determination to “stay hydrated.” Only after my diagnosis did I learn that my uncle and his dad both had prostate cancer at my age. It was totally on me… and I was too busy simply living to get tested.
Thankfully, I got a new primary care doctor who wanted to kick off our relationship with a blood test. And two days later, our shared mission shifted radically from wellness to survival. After carefully considering all the options, I decided to get a radical prostatectomy — which meant my entire prostate would be removed.
Going into the surgery, the big concern was: Had it metastasized? If the cancer is contained in your prostate and they take your prostate out… you’re good to go. But if it turns out that it spread… your journey could be a very long one (or a very sad, short one). It’s all about the “margin” between the cancer and the edge of your prostate, which can only be measured once it’s out. I envisioned my prostate as a good-looking little apple with a dark and rotten core (a good margin) or a windblown old dandelion with missing tufts (no margin plus spread). My doctor’s report after the surgery: “Not as good a margin as we had hoped… we can be guardedly optimistic… but we’ll need to wait for your PSA score in later blood tests.”
A PSA score is a number that measures how much “Prostate-Specific Antigen” is in your blood. A high score can indicate your body is battling invasive cancer cells — and my initial PSA of 55 was through the roof. Two months after my surgery, it was good news… down to 0.09. But as my doctor says, “A big flame or a tiny flame — either can start a destructive fire.” He’s greedy and wanted it all gone, so he would only say he liked the trajectory and “we’ll see how it looks down the road.” And finally, my latest blood test has brought home some very good news: A score of <0.03, which means less than the smallest number they can measure.
As I approach my 70th birthday, I’m energized by my clean bill of health and busier than ever. (I’m writing this six days into an eight-cities-in-ten-days tour promoting my newest book — which is actually my oldest: A journal I wrote on the Hippie Trail from Istanbul to Kathmandu when I was 23 years old.) And my doctor is giving me an A+ for being proactive: colonoscopy (check!), a visit to the dermatologist for skin cancer tests (check!), physical therapy for post-surgery wellness (check!), massaging away scars from the robotic surgery, which left big dimples on my belly (check!), Kegels (check!), stretching regularly (check!), and lots of walking (check!). (I’m training for a week of hiking in Italy’s Dolomites this summer.)
Post-surgery, I found fellowship in a subreddit for men dealing with prostate cancer, which one Redditor described as “the cancer of little indignities.” And that includes lots of pee problems.
“Incontinence” is a word known by women of a certain age… and by men who’ve had prostate surgery. When everything’s working as it should, underappreciated little muscles (sphincters) keep urine from leaking out of your bladder until it’s time to take a pee. After having your prostate removed, you leak because you can no longer use your internal sphincter, and you need to bring out and train the reserves — an external sphincter, which is the only one women (who have no prostate) can ever access. And that takes a month or two (or maybe six…) of Kegel boot camp.
It's a scary thing for anyone to leak. (You can read about a horrible disease called “fistula” that plagues poor women in Africa.) For many women in our society, leaking is an uncomfortable fact of life, especially after giving birth. And after men have prostate surgery, they gain an appreciation for what women go through. What do you do? Depends!
Yes, men learn about pads (women smile knowingly). The incontinence stage seems to go on for an eternity. It’s made worse by knowing that 5 to 10 percent of men have long-term incontinence after prostate surgery, and many even need follow-up surgery to implant tools to help out. A key for anyone in this situation is patience. I was determined, but I almost felt hopeless. Dribble, dribble, deluge, dribble, dribble, pads, pads, pads. Then, after six weeks (and lots of Kegel exercises — which is like flexing the biceps between your legs), it was no more pads for me! (While I’m doing great, I now have much more empathy for the older people who, for decades on my bus tours, asked with terror in their eyes, “How long until the next potty stop?”)
Thanks.
Wow! I does seem like he's very optimistic after a few months. I wish him well, but it does really paint a way too sunny picture of what it means to have PC. I mean... in a little less than a year I'll stop ADT and see how things are. My numbers are good, but in no way do I consider myself to be "cancer-free."
Yep husband’s PSA got that low after radiation when he was Steve’s age but 7 years later it came roaring back. So I would never have considered him cancer-free back then. Just enjoying a dormant period. I wish him well even though he is very intolerant of conservatives. I would guess many of his customers are too and they might be surprised to know how much he disdains them.
ditto here.
After 6 months of ADT, 2 months of radiation, and a total of 2 years of ADT my psa went from 19 before treatment to 0 and remains undetectable 6 months after stopping ADT, BUT I am also fully aware that this journey is very likely not "over" and very well could require further treatments in the future. I don't know if Rick just didn't do his homework about pca or is being a bit overly optimistic perhaps for his mental health and/or his friends and fans with the "just cut it out" mentality.
I have learned a lot more about what to expect with pca from this forum than I did from any of the doctors other than Dr. Scholz and his pcri.org website and videos. Dr. Scholz who has specialized in prostate cancer for 30 years currently does not advocate for surgery with all the equally effective non-surgical alternatives currently available.
to add, he describes female fistulas in Africa and correlates to incontenemce… which is a complication of genital mutilation.
I mean, ok… but no mention of rampant advanced PC in 3rd world countries.
I get it, but there is more he can shine a light on instead of the comparison of comparative plights.
Wait until he gets a gander at his penis or, lack there of in 8 months… atrophy is a bitch.
apparently there is a 7000 character limit in these posts... here's the rest
This may be TMI, but as I head into this stage, my understanding is that, after all that dribbling, your bladder gets too used to the feeling of frequently emptying itself, wimps out, and basically forgets how to hold a full load. This needs to be addressed by a gradual expansion of the liquid you retain before emptying. I’m enjoying the game of measuring each trip to the toilet (working from 100 ml to 250 ml and sometimes triumphing with 300 or, my personal record, nearly 350 ml). Still, whenever I cough, bend in a strange way, or LOL… I have an inkling for a tinkling.
And what about the sexual dysfunction you always hear follows prostate removal? It varies from no problem to no more erections forever and ever, depending on how much unavoidable nerve damage your surgeon did while taking out everything that could have been cancerous. (How’s my ED situation? Let’s just say I’ll be no fun at an orgy for six to 12 months.)
Going forward, I’ll get my PSA tested twice a year and then annually. Statistics and my surgeon tell me I should be just fine. There’s a lot that can be improved on in America’s healthcare industry — but as a citizen, I see the glass of our government as not half empty but as half full. (I believe efficient, affordable, and accessible medical care is a civil liberty — and in a country as rich as ours, it should be equally available to all.) I am so thankful for the care I was blessed to receive from Seattle’s Fred Hutchinson Cancer Research Center, the army of smart and dedicated people at UW Medicine, and my surgeon, Dr. Daniel Lin. And I have lots more to be thankful for… including the support of friends and loved ones (including you!) and a strong faith that I’m in good hands.
I’m looking forward to many more years of happy travels, exciting collaborations, and beautiful friendships. Thank you for your love and support as I weathered this storm. I’m so happy that, together, we get to keep on travelin’!
I am happy for Rick Steves; but, I too was disappointed that his comments were somewhat superficial. I would have preferred that he referenced his treatment program that delivered the well deserved happiness and relief that he has at this moment.
But that is his business. Maybe he has posted more on Facebook but that is a rather cesspool of a resource that I have no interest to wade in to it very deep to find prior posts
Rick's initial post.........
Dear Facebook friends,
I’d like to take a moment to share some important news. 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. There is a clear path forward to getting healthy, and this fall, I’ll be in the hospital for a few days having prostate surgery.
My doctor’s fine with me filming two new TV shows in France for the next three weeks, returning home to Edmonds by mid-September. I’ll likely get my surgery in late September, be laid up for a month, and—God willing—be cancer-free and back at it by the end of October.
I have great trust in my doctor and in Seattle’s Fred Hutchinson Cancer Center. And I have lots more to be thankful for…including the support of friends and loved ones and a strong faith that I’m in good hands.
While the statistics tell me I should be just fine, I’ve been fortunate to have never spent a night in a hospital — and I find myself going into this adventure almost like it’s some amazing, really important trip. I feel good about my positive attitude — and I expect to take home some delightful, if intangible, souvenirs like: appreciating and seeing a vibrancy in the little things; appreciating the goodness in people and the treasure of friends and family; being wowed by modern medicine and the army of amazing, smart, and dedicated people that make it possible; appreciating what a blessing life, health, and this world to enjoy is; and — just in general — being more thankful.
I’m looking forward to many more years of happy travels, exciting collaborations, and beautiful friendships. Thank you for your love and support (and any “travel tips” you may have for me as I set off on this journey).
Rick
PS: I’ll keep you posted.
After surgery post...
Dear Facebook friends,
Thanks for all the support since I first told you about my prostate cancer diagnosis. I promised you an update when I shared this news back in August — and I’m happy to say that I’m home now after successful surgery and a night in the hospital. (Packing light for my homecoming, I left my prostate there.)
Since I was first diagnosed, I’ve thought of cancer as the latest adventure in a lifetime of travels — and like always, I’m excited to share a trip report with you.
My journey began with a blood draw to screen for prostate cancer. I was told that, at my age, a PSA score of 4 or greater would be considered “abnormal.” So, when I got the shocking news that I had a PSA score of 55, it was like I’d been thrown into a new land fraught with mystery and uncertainty. Suddenly swept away from my general practitioner and into the world of oncology, I needed to make important decisions about things I knew nothing of… and I barely spoke the language.
In my case, I had options (basically non-surgical treatments or just cut it out). Caring people with strong opinions and lessons from experience weighed in as if in a debate tournament, competing in the interest of my health.
Psychologically, I was inclined to embrace the “ectomy” route — cut it out. And in my case (where the cancer is, how it’s acting, and my willingness to deal with — or live with — the side effects), it seemed surgery was my best option. After talking with my doctor and carefully considering each treatment strategy, I chose to undergo a robotic radical prostatectomy.
On the big morning, my alarm rings at 4:30 a.m.… and the day for surgery is finally here — certainly a high point on this journey’s itinerary: Drive through a sleepy world, check in, strip down… gown up. A moment of prayer with my surgeon and Shelley (my angel caregiver through the physical and emotional white water of this ride). Then, careen gracefully down the hallway on a gurney (feeling kind of melodramatic to actually live the POV of so many movie scenes) and enter the operating room — which is reassuringly filled with an awe-inspiring mix of masked-up experts, technology, sterility, and humanity. I give myself over to the crew that now holds my very future in their hands. The ventilation mask lowers… take three… deep… breaths… and…
I wake up feeling great, chatty, and making jokes I think are clever… clearly on some serious medicine. Thankfully, my doctor has a good report: Surgery went well, there was no sign of any spread, and the cancer seems to have been embedded deep in my prostate, which is now at the lab.
Before the surgery, I had two visions of my cancerous prostate: a small apple with an invisible rot at its core and an old dandelion with missing spores. My wish was the apple, and that’s what I got. But we won’t really know how “it went” until the lab reports are in. And that’s when I hope to hear the words “cancer-free.”
But for now, I’m still in the next stage of this trip: “the road to recovery.” Buckling myself gingerly into the passenger seat, I was overcome with thankfulness: that I live in a corner of the world where hospitals aren’t being bombed or flooded... that I have access to a brilliant UW Medicine surgeon and the best tech anywhere at Seattle’s Fred Hutch Cancer Center... that I am surrounded by the love and support of so many…and receiving quality care in a major medical crisis with no concerns about crippling costs (which for a citizen of any great nation should be a civil liberty). Yes, I am thankful.
On my first day back home (when not napping), I read through cards and social media comments from caring people sharing experiences and cheering me on. All those good vibes, warm thoughts, and fervent prayers — while intangible — took on a kind of tangibility as they collectively worked to fill my sails with hope and strength to finish this journey successfully. Thank you.
It wasn’t so long ago that people called cancer “the C word,” or if they called it by name, they did so in a whisper. As anyone who gets cancer learns, it permeates all corners of our society, and it’s nothing to be ashamed of or to hide — and when it comes to older men, it seems being tested for prostate cancer (a simple blood test you can request from your GP) is a smart idea.
As for me, the next step is to get my catheter taken out — after which I’ll be steep on the incontinence learning curve. Then, I’ll get the lab reports. (I’ll be sure to keep you posted.)
In the meantime, I’m making a point to celebrate the vibrancy that fills my world... to give thanks for everything that works well in my body... and to meditate on how communities, technologies, and livable environments that we enjoy are not accidental — they happen when good people care and do good things.
I’m looking forward to many more years of happy travels — and, of course, I’ll be sure to bring you along!
Rick
So, his margins aren’t clear and no dialog of ADT?
I’ve had undetected PSA for a year, am I cancer free? No, not by a long shot.
I do wish him the best, as I’ve said, I’m a fan of his, he needs to do better than writing about it as a jovial adventure.
His "Trips" are now a "Journey"....Have a window seat and enjoy the view.
Good Luck, Good Health and Good Humor.
j-o-h-n
Personally, this whole thread comes at the right time for me. Day 84 of HEAT trial using enoblituzumab as neoadjuvant. Tomorrow is the day. RARP.
Reading over his posts here just reminds me that humor is an important antidote to the challenging problem that PCa presents.
Today as I did some pre-op visits with care team, my partner and I discussed the prostate biopsy from several months ago. She made a point, somewhat jokingly. "Do you think if every urology medical resident had to have a transrectal prostate biopsy they would hesitate before making it the first trick to pull out of their little bag?"
We all get to choose how we deal with being in the club...
Hockey and PCa?
diet and PCa
PCa and exercise
New Guy
new guy
