Despite the guidelines and ‘SOC’ to not screen, I began my ascent in my latter 40’s, screening for the beast with PSA and DRE. As a solo parent and sole provider for my two children I prioritized my health well ahead of the trail markers citing ‘danger do not screen’.
After a few years and what many still proclaim as an unnecessary biopsy, I changed direction, relaxed in the complacency of the common trail blazed by ‘stats and science’. Sadly, while on that trail, we missed the very thing we were looking for – prostate cancer.
Then in 2014, with the insight of a forward-looking urologist in the UK, (considered by many as the home of socialized medicine), we scanned the slopes with an mpMRI. A lesion was found. After many consultations back home in U.S. studying the available treatment paths, I settled on RP, based on detailed imaging and a new trail marker, <0.010.
We did not achieve the desired summit and again I found myself scanning the slopes for next steps in my journey. After multiple consultations and much study, I declined the latest science, the STAMPEDE trial. (Interestingly, switch couple letters and we get trail). My choice was a less common path. Although I accepted we were shooting blind, I went with salvage RT to the prostate bed only, no ADT. Not totally unexpected, predictable perhaps, missed again.
All my initial consultations offered the same conclusion and recommendation. At my uPSA of 0.11 no available imaging in the U.S would work and as I was not accepted into the U.S. PSMA PET CT trials, it seemed my only path to possible durable remission was, once again, the STAMPEDE trail. (That was 2017)
Still not giving up on a viable alternate route, I came upon imaging in Europe, specifically the Ferrrotran nanoparticle MRI. So, I packed my bags and had this imaging along with the available there Ga68 PSMA PET. Although the latter was ‘clear’ the nanoMRI successfully identified multiple cancerous pelvic lymph nodes. Consultations back home were unchanged; ADT and chemo.
In my ongoing and carefully planned self-directed research I came across the successes of salvage extended pelvic lymph node dissection surgery with the frozen section pathology method. (A side bar: before my RP I had wonderful and informative conversations with a neighbor, Dr. John Wickman, known as a godfather of robotic surgery. One of our chats included the risks of lymph node chasing).
Well, that surgery, done in March 2018, yielded a nadir of <0.010. For the past three years my uPSA has been holding very low stable 0.03X range, no ADT, no chemo (not that this won’t be further down the trail).
As I carry on with my own self-directed efforts, ahead of ‘SOC’, science, I periodically have imaging and liquid blood biopsy testing, looking for lingering prostate cancer. This past July, perhaps serendipitous science or just stupid luck, my testing lead to the unexpected finding of metastatic melanoma in my liver. I have completed four doublet immunotherapy treatments and am currently awaiting results from head-to-toe imaging.
I do some dietary/supplement things plus extended exercise in attempt to address lingering stem/senescent cells. Although possibly more stupid than forward looking science, with no physical harm that I can determine, I climb onward.
All the best to all of us fighting cancer.
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NanoMRI
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Your journey and experiences have been inspiring. I encourage all members of this forum to read your entire story as outlined in your book, “Prostate Cancer: Sheep or Wolf?” I found it on Amazon and believe it to be a valuable source of information for those wanting more options in the fight against PC.
Seems to me that you have bypassed Mt. Stupid and have ascended up the knowledge slope in a reasonable way. Given the corrupting financial incentives of big pharma to sell the most expensive cures regardless of side effects, doing your own research and following a self directed path is not all irrational.
IDK if my trail is the best, but so far I am very grateful. To your question, no family history (seems most of us do not), Caucasian and young. I had a forward looking GP, very supportive of my efforts to stay ahead of all potential risks (especially with two young children). PC was on my radar as I had knew of several younger retired men in the little town where I resided who had died from this beast.
At the time of my diagnosis I was living and working in Surrey, England. It was time to see a urologist and instead of returning to Texas I sought out a urologist with leading-edge skills in diagnostic techniques. It was on a Sunday, as a private patient that I saw Mr. Sarb Sandhu, consultant urologist, New Victoria Hospital. London. We discussed my history of fluctuating PSA scores and he did a far more thorough DRE than I had experienced, finding the lesion that had been missed for at least several years. I was off to an mpMRI.
Although screening was not part of 'standard care' in US nor UK, my consultations and PSA testing in the US were covered by my private health insurance, and the docs were certainly practicing within the boarder scope of SOC, not liable for malpractice. Dr. Sandhu in London consulted with me as a private patient offering investigative methods not offered to British men under the NHS. Yet he was in no jeporday offering me those services.
Prior to my diagnosis one of the men on my staff wife was diagnose with breast cancer,. He chose to the engage the Bupa private health insurance I provided my staff. I learned his wife saw the same medical team but much quicker than they would have under the NHS and also received a bit more investigative effort. The treatment plan was the same.
My experiences in UK and those of my staff using Bupa provided me with important lessons towards understanding SOC is a broad spectrum of offerings ranging from underserved to the unnecessary, primarily intended to protect doctors and medical centers, not patients.
I applaud your efforts to obtain cutting edge treatment rather than settle for SOC. SOC is treatment practiced as the result of trials, review of those trials by the powers that be and then incorporation of that treatment into mainstream medicine. Nothing wrong with that for the majority of diseases and maladies. But this process takes considerable time. When progress is so rapid and varied in both diagnosis and treatment, that SOC sometimes lags the most effective treatment. As in any field, there are subspecialty experts who know the most effective treatment prior to it becoming SOC, through their own database of treated patients or by informal collaboration with other experts in the field. Some of these experts are the very ones that design trials and publish research and clinical results related to the newest treatment protocols. This isn't "pseudoscience", this is treatment protocols practiced by some of the best, most knowledgeable experts in the field before those protocols become mainstream or "SOC".
Good for you for being your own advocate and not accepting SOC. Recommendations regarding screening for some cancers, such as prostate and breast, are based on epidemiological studies with huge numbers of people. It's based on cost effectiveness for the country and population as a whole. Ideally, every woman would have not only a mammogram every year, but a contrasted breast MRI and sometimes an US. But that is too expensive and would overwhelm the healthcare system.
The US Preventative Services Task Force (USPSTF) currently (2018, revision underway) recommends men 55-69 screen for prostate cancer with PSA on an individual basis. They do not recommend screening for men over 70 and over. Likewise, the American Cancer Society recommends against prostate cancer screening for men with an anticipated lifespan of (however that is calculated!) 10 years or less.
All of this is based on large numbers of the population, not individuals. It is true that the majority of prostate cancers are indolent and slow growing and the individual will die of some other cause. The cost savings for imaging, biopsy, surgery or other treatments for large numbers outweigh the overall benefit to saving some lives-except, of course, it is your life! Also factored in are the side effects and complications related to the treatments. The decisions can be difficult.
That is why sometimes recommendations from trials and using epidemiological studies are fine for the population as a whole. But there are times that individualized care from real experts trumps SOC and task force recommendations.
The USPSTF gained power to control disease management through the ACA and their recommendations of "evidence-based medicine" and based on the A, B, C, D, and I grades. At this point, there are no longer I (Inconclusive) recommendations as C and D recommendations do not have to be covered by insurance and are NOT a recommended service. A Grade C recommendation is more of an advisory recommendation to the docs so it does not have to be recommended but discussed if the topic comes up. The Affordable Care Act is more about how healthcare is run than making it "affordable" for the US. The USPSTF KNEW that the PLCO Trial was completely flawed and used it more than the numbers from the Goetberg and ERSPC trials. The USPSTF had its red herring - "there's no significant difference between screening and not screening" - to stop screening to build out their "clinical pathways" of the management of prostate cancer.
While not a full immunity for doctors, the Affordable Care Act (ACA) includes liability protections for healthcare providers adhering to evidence-based guidelines, as outlined in Section 3512. These provisions aim to shield clinicians from medical malpractice claims when they follow guidelines established by organizations like the United States Preventive Services Task Force (USPSTF).
So when we look deeper into the USPSTF the 1996 recommendation stated that the screen-eligible population would double from 23M men to 44M men by 2010 and questioned the affordability of screening.
The Industrialized Healthcare Complex knew they had to stop a population-based screening like women have with breast cancer. In fact, the USPSTF went after breast cancer screening right away to change the age from 40 to 50. Because women have bigger balls than men this ended up in the hands of the US Congress which overturned the USPSTF change recommendation.
Unfortunately, we men had an I (Inconclusive) recommendation for men under 75 at the passing of the ACA. This is when the USPSTF torpedoed any positive progress of what we had learned to that point and as MANY doctors and associations have stated since "The USPSTF threw the baby out with the bath water". Grade D - Do not use PSA testing for screening for prostate cancer in men of all ages. This recommendation did nothing but buy the IHC time to get a game plan put together on how to utilize the benefits of PSA.
The USPSTF and those on that panel with ties to the Industrialized Healthcare Complex (Dr. David C Grossman - Kaiser Permanente) just stopped a population-based screening recommendation for prostate cancer. And as Kaiser Permanente Dr. Joseph Presti states in one of his publications in 2019 - "the 2012 USPSTF Statement provided an opportunity to observe a “natural experiment” to observe how it affected screening, biopsy cancer detection, and metastatic rates".
Kaiser Permanente is one of the leaders behind the "evidence-based medicine" movement and has been VERY involved in the prostate cancer screening recommendations. Their single-payer care model is not set up for new preventive care recommendations vs the fee-for-service model that allows doctors to utilize their skill and expertise and spreads the risk much further than a single integrated care system. If you want to be really honest the US is moving towards a for-profit/socialized care (evidence-based population care) model as they can ration care based upon their "evidence". Some of the tricks are "best practices alerts" which are just another sleight-of-hand practice of corporate medicine. The ACA was very much about keeping as much profit as possible in the IHC.
It's NOT a coincidence that the ACA was just another way to make the IHC significantly more profitable and pass the burden onto the people. The 2012 recommendation should have been a movement towards more AS for low-risk diagnosis and allow for the discovery of high-grade disease that need more immediate treatment!
And BTW, the USPSTF recommendation was due in May 2024.
The ACA has been a disaster. If you go on the government website and peruse the various plans, there are literally dozens. However, you can only sign up for ones available in your area of the country. So, right away, limited choice. The premiums are similar to what you could previously get a PPO policy from one of the commercial insurers-Anthem, United, Aetna etc. Those companies no longer write individual policies; you forced to go to the Exchange/ACA portal for insurance coverage if you are under 65, not eligible for Medicaid and don't have access to group coverage. Many providers, including hospitals, don't accept ACA insurance because the reimbursement is worse than Medicaid.
I am on ACA coverage here in California. I am self employed and in the real estate industry which has tanked. I was able to get group coverage through the association and signed up for the Bronze plan. Just under $700/ month with a $7500 deductible.
When the market tanked I switched to the ACA Market Place last year and upped my coverage to the Silver because it's based on income. I would have to pay more if my income went up. $1050/ month and like $6500 deductible but I get a subsidy on the monthly premium. The price of my meds went up, the price of my labs went up and the odd one, no free eye exam that I had under the Bronze. The eye exam was $180 and the receptionist told me to go to Costco for only $120. So the moral of the story is, the ACA plans are more expensive with less coverage.
Another BIG win for the Industrialized Healthcare Complex. Government subsidy money on higher premiums, higher copay and deductible, less coverage, and better reimbursements. The IHC hates government reimbursements.
Doc, I enjoy reading your comments and your thoughts. Overall, I can broadly concur with what you have written but I do see it differently. Simply put, the men who die from this disease and the men on ADT are acceptable losses within our society; rationalized by such explanations as SOC, evidence-based medicine, fee for approved services schemes, etc. Given the annual death rate and the number of men on ADT I do not buy into the premise that the majority of prostate cancers are indolent so we can be passive about screening and early treatment.
SOC is a very broad range of services, from (legally) under diagnosed and under treated to (legally) excessive, unnecessary, and even over treatment. SOC is more about protecting docs, health organizations and insurance providers than assuring common patients get the best in timely diagnostics and treatment. Without question, costs and limited medical services band width are major constraining factors in all flavors of healthcare systems.
I see your reference to the ‘cutting edge’ diagnostic methods and treatments I advocate for and obtain as being within the SOC broader spectrum; my docs and providers could not be successfully sued for malpractice nor non-compliance.
This includes the PSA screening I did in my forties and fifties, the mpMRI and genomic testing I had done in 2015, ultrasensitive PSA testing since my RP, imaging and liquid blood biopsy testing I currently have at uPSA 0.03X range. All ordered for and delivered by licensed physicians and covered by insurances with the exception of insurance cover for the genomic testing I had in 2015 (it was approved two years later).
The Ferrotran nanoparticle MRI I had seven years ago next week in Netherlands was in a European trial I gained participation into, on my own effort. The salvage ePLND surgery with frozen section pathology method I had done in Belgium was well within European SOC. This procedure was then and is today available within US SOC – no doc or provider could be successfully sued for offering/providing it, or not. The why for it not being common is a different discussion.
As for your statement “there are times that individualized care from real experts trumps SOC and task force recommendations”, I agree, however, for prostate cancer, I believe this is far more than ‘there are times’.
Good chat! All the best to all of us fighting this beast and the common path.
Medicine is like any other profession—there are good doctors and not-so-good ones. I like to think of it as a bell curve, with a small number of terrible doctors at one end and outstanding ones at the other. Fifty percent of doctors are worse than the median 😉 (misleading Statistics 101).
Unfortunately, there is no way to judge doctors here in Belgium, and I suspect the same is true in many countries where healthcare is not money-driven. Perhaps in the U.S., some doctors have a good reputation, but here, there's no reliable way to assess the skill level of the person you're trusting with your life.
For providing basic standards of care, this is probably fine—teams help with that. But if you want to avoid dying and/or optimise your outcome, you need to understand more than what can be covered in a 30-minute consultation.
This means doing your own research from trusted sources. I don’t know where the "Mt. Stupid" metaphor originated, but it seems entirely inappropriate and dangerous.
It is really stupid to just accept what experts say. I could give several examples of incorrect information I’ve received over the past year. There are probably more instances, but I simply didn’t know any better.
Doctors’ time may be an issue in some places, but not in Belgium. All the doctors I visited took the necessary time without rushing (which is great). They tried to explain things and usually answered my questions—or simply avoided replying!
In the context of discussion on this forum, it started with Tall Allen and I will quote "Be aware that for most people, doing your own research only gets you to the top of Mt. Stupid."
I find it most unfortunate Darryl gave this a strong 'verbal' endorsement. As most of us on HU are doing our own research, a reasonable presumption is this how some see most of us.
I agree the "Mt. Stupid" metaphor is entirely inappropriate and dangerous.
Belgium Professor Dr. Alex Mottrie, OLV Hospital, Aalst performed my salvage ePLND with the frozen section pathology method. I found him doing my own Internet research; (some would say Mt Stupid research). I liked what I read up on him and his organization while on ski holiday in France and emailed him. He promptly responded - "Dear sir, I am actually in the Alps as well. I propose salvage lymphadenectomy robotically. We can call Tuesday if you want. Sincerely, Prof dr Mottrie."
We spoke and he reached out to Radboud UMC, Nijmegen to obtain the nanoparticle MRI findings. After several more non-rushed conversations went to see him. (No American doc I have heard of is this available, especially without billing time). I have also had surgery in France and multiple in the US including my RP. The medical care I received from Dr Mottrie and Aalst Hospital are second to none.
Here in US about all we get on docs is a postal code and the pedigrees of the fanciest medical schools known to man. Some actual patients as well as non-patients offer boastful recommendations. (How empowering it must be to say you have been to or know the best of the best - when that may well be the only one that treated you; if you were indeed treated by them).
Your story of resilience, exploration, and dedication to your health journey is extraordinary. It highlights the complexities of navigating prostate cancer and the broader challenges of managing one's health when the "standard of care" may not align with individual needs or timelines.
While some might see this as "climbing Mt. Stupid," your approach reflects a thoughtful, informed, and proactive mindset. You've sought second opinions, pursued advanced imaging abroad, and made decisions rooted in both data and personal values. This isn't reckless—it’s a testament to your commitment to understanding your unique case and the courage to act decisively.
Your ability to research, question, and adapt is commendable. Modern medicine often benefits from patients like you who push the envelope, prompting further dialogue and innovation. That said, self-directed healthcare, while empowering, also requires vigilance against biases or misinformation. It seems you've approached this with care, engaging professionals and leveraging their insights alongside your own research.
Your journey also serves as an inspiration to others in similar situations, demonstrating the importance of self-advocacy, persistence, and open-mindedness in the face of life-altering diagnoses. Whatever lies ahead, your resilience and determination will continue to guide you—and perhaps others—toward the best possible outcomes.
Thanks for detailed history of your journey (trail). Mine was similar since 2007 with RARP chemo and salvage RT to prostate bed only and no adjuvant ADT. BCR in 2009. Many steps and trials since. But still had LN oligomets to pelvis and abdomen in 2022. So had SBRT to all visible mets then went to Perth Australia for experimental radioligand treatment to seek and destroy any and all micromets. This was with Lu-J591 ( now called Lu-THX591) by Dr Nat Lenzo at GenesisCare AU. Now 3 years after one treatment cycle and remain undetectable PSA <.015. My maintenance is long cycle BAT (12 weeks high testosterone (1000-2000) then 4 weeks ADT, Orgovyx plus Nubeqa.
"Mt Stupid" is a pretty pathetic metaphor as most all of us on HU are NOT doctors or highly educated cancer researchers. We're a bunch of Brothers trying our best to figure better ways to treat and manage prostate cancer!
Tall_Allen quoted me the STAMPEDE trial with my BCR (pelvic lymph node after RALP) and stated that I needed 36 months leuprolide and 24 months of abiraterone. Was I receiving the appropriate level of treatment or being over treated at 36/24 months? While the STAMPEDE is a good reference to look at and follow, there are no guarantees of the results which I will say that maybe I am on Mt. Stupid for only being on leuprolide for 24 months and 18 months of abiraterone. This decision was made upon discussion with my MO who said that he felt may be a single digit benefit difference between 24 vs 36 months given my pathology and treatment history and response. And as we see some more current data and recommendation the time on ADT is being scaled back. It's a shifting field of research and opinion amongst the HU group and the global prostate cancer community (docs, research, etc).
So while we can recite clinical trials once the trial is implemented into common practice we get the true picture of what that trial looks like on a true population scale outside of the confines of the trial. My own research allowed me to look at the pro's, cons, and what's in the middle and make a decision that fit myself and my care team. So am I on Mt. Stupid?
Mt. Stupid are the "experts in disease prevention" at the USPSTF who recommended not using PSA testing for screening for prostate cancer! Had they followed the advice and cries of the many warrior docs and urologic associations who fought to a transition of more AS before definitive care, my gut says that we would have not had as many men with advanced and metastatic disease at the time of diagnosis as we do these days. Mt. Stupid was using the highly contaminated PLCO trial as the decision to make a population based recommendation for the entire US population of men!
So thanks NanoMRI for stoking the possibility of climbing Mt. Stupid (big f=====g eye-roll).
I appreciate your vulnerability of sharing the way you do in this group. I bet if SOC had things dialed in you wouldn't be questioning things and you'd be some cured old dude out in the world just living your best life. While some question your decisions, your results speak for themselves - good prostate cancer management and early detection of metastatic melanoma. While we can dismiss your experience as anecdotal, you ARE the patient speaking from your experience not some trial that you're reciting.
My Mt. Stupid (according to some) are using uPSA. But what is the benefit for me? I know how well my disease is being managed. I have time to research the latest & greatest changes in the PCa world of treatments. I can look at any lifestyle changes that may or may not need adjustment. I can better trust myself since the IHC is what failed me for early detection of prostate cancer.
My goal and hopes are to keep my prostate cancer as well managed as you have done with yours. Thanks for sharing your journey of how you got to where you are!
Go for it, NanoMRI! You are a great role model for those tempted to throw in the towel too early. I was energized by your post. I;ve been deluged with good advice from friends, acquaintances, my dentist, and others, each suggesting this or that program, hospital, facility to contact about protate cancer. It is overwhelming. Online searches have not beenmuch help. My supplementary insurance, Humana, has a closed set of facilities in their loop. Sloan Kettering is not available to me. If I were to pay SK out of pocket for a single consultation it would cost me about $3500! And they might end up telling me the treatment I am currently receiving is the right one---for $3500? I'll keep investigating the possibilities at a more relaxed pace. I've gotten over the initial shock of finding out about my prostate cancer and the associated anger at my general physician failed to administer PSAs over ten years of mybeing in his care. So thanks for our enlightened post. Best wishes and remember: Smile whenever possible!
All the best to you! We men of all ages are underserved with this beast - the self-advocacy effort still required ten years post my Dx amazes me. Surgery, radiation and drugs are the treatment buckets. Once it has spared it seems drugs are the most common treatment path (your bio does not share how far imaging is indicating the spread).
I did a year on Bicalutamide only for added insurance after my salvage lymph node surgery. Although I experienced several unwelcomed side effects, I remained able and willing to smile :). Thank you for the kind words!
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advice request with regards to SRT/similar post-op RP treatment
Any Data or MO Advice Regarding Dutasteride / Finasteride At Very Early Biochemical Recurrence?
When to start ADT, 
Follow up at Duke !!
End of Abiraterone - a question to the knowledgeable guys here
