(first published on AnCanSpeak substack; subscribe for free)
Less than 50% of Patients trust their Providers. Now that’s a handpicked statistic from a survey conducted during Covid and published in JAMA Network in 2024. Healthcare professionals amongst our readers may have grounds to push back. That said, AnCan’s frequent experience from virtual conversations in our daily groups corroborates that anecdotally perhaps half our participants doubt the medical advice received. Our own 2024 survey backs that up. From our GU ASCO 2026 abstract4:
Seventy percent brought information from AnCan to their providers, 49% added new providers, and 40% changed their lead provider. Over half (54%) reported AnCan influenced their treatment path.
That doesn’t bode well for a trusting Patient-Provider relationship!
“Medicine is characterized by an inherent asymmetry of information and power between physicians and patients.” And goes on to say: “Demonstrating trustworthiness and restoring trust… requires reconsidering the balance of power between patients and health care professionals.”
This brings to mind a cartoon AnCan has employed in presentations:
Both JAMA pieces agree that our system is broken. They recite a fact that AnCan has previously noted… on average Providers interrupt Patients after a median of 11 seconds. In front of Providers, Patients can’t even begin to collect our thoughts, never mind express them.
The article troops out a whole bunch of remedies. Starting with teaching HCPs how to listen, it moves to improving health systems so you actually see your doc – not a surrogate practitioner, encouraging longer patient visits – so Providers have time to listen, and address mis- and disinformation. On a more grandiose scale, the article points out that differences in wealth, insurance status and education also influence Patient-Provider trust levels.
The closest either article comes to balancing the scales between Patient and Provider is to say:
Empowering patients through patient education and skill building, increased transparency in care, and shared clinical decision-making would also increase the collaboration in physician-patient relationships. Mutual partnerships between patients and their physicians may foster more stable patient trust instead of requiring patients to take a more tenuous leap of faith.
Noble words, but who is to take on this Sisyphean task?
AnCan likes to think we lead the way. Name one other organization whose mission is to make you your own best advocate. Already this week we fielded one call from a longtime legal Volunteer whose trust in an inestimable Medical Institution was violated because the Provider they spoke to committed the inexcusable and cardinal sin of simply failing to read the file. Or another Participant, a Medical Provider himself, who needed advice because an Institution was knowingly yet improperly billing him.
Being your own best advocate may not fully restore trust in our health system, but it goes a long way to leveling the playing field. It certainly improves patients’ self-esteem and in doing so, makes us feel immeasurably better.
rick davis rd@ancan.org
References
Perlis RH, Ognyanova K, Uslu A, et al. Trust in physicians and hospitals during the COVID-19 pandemic in a 50-state survey of US adults. JAMA Netw Open. 2024;7(7):e2424984. doi:10.1001/jamanetworkopen.2024.24984
Even little me speaks to a lot of people, some of whom have Prostate Cancer. And advanced Prostate Cancer and many of them are not acting as their own best advocate. It’s very important that people learn to take control and own and deal with their disease.
Maybe it’s a little long winded and boring, but it took me a year or 2, into my stage, 4, Prostate Cancer. Before I really took control and had one of those aggressive and idiot doctors who told me” i am a ph d in oncology, and you are a beginning student, ” and he tried to dictate to me everything, including his team of radiological, oncology, and his drugs and his procedures, and I watched a number of his patients who I know personally, because I worked with them die without doing all the things they could. Anyway, after a year two I was seeing consulting with good doctors and dana farber and at sloan, and I switched from advisors to sloan and very happy with my oncologist now…. It is very important for people to come to visit. Taking ownership and managing as their own number one, advocate. Okay, I’ll stop boring you because my doorbell is ringing. Thank you bye!”
How I Got a Pancreatic MRI for Free – And How You Might, Too (or at a Reduced Cost)
By: David Sharp
Since finding out last year that I have a BRCA1 germline mutation, I’ve been keenly aware that it raises my lifetime pancreatic cancer risk to nearly 5%, compared with 1.7% for the general population.
The overall five-year pancreatic cancer survival rate is only about 13%, largely because this aggressive, stealthy cancer is often diagnosed after it’s already spread. For that reason, my medical oncologist recommended an annual pancreatic MRI to catch it early, just in case. That made abundant sense to me, so I scheduled the scan at OHSU, a major medical center here in Portland, Oregon. I assumed that between my BRCA1 mutation and pancreatic cancer’s lethality, original Medicare—my health insurer—would pick up the tab, which would otherwise cost me a few thousand dollars.
Turns out, Medicare probably won’t.
Why not? In part, Medicare relies on guidelines from major medical societies to determine what it will cover. Unfortunately, those societies have failed to reach the kind of strong scientific consensus that Medicare likes to see when deciding whether to pay for a procedure or test. The American Society for Gastrointestinal Endoscopy recommends pancreatic cancer screening for BRCA1 carriers regardless of family history, citing research suggesting that limiting screening to people with a family history could miss two out of three pancreatic cancer cases.
By contrast, NCCN guidelines recommend pancreatic screening for BRCA1 carriers only if they also have a close relative with pancreatic cancer. Having no family history of pancreatic cancer would normally be good news. But my lack of a family history worsens my chances of convincing Medicare to ante up.
What’s more, Medicare would view my pancreatic MRI as a “screening” rather than “diagnostic” test because I have no pancreatic cancer symptoms or diagnosis. Medicare automatically covers screening for several other cancers, including prostate, breast, and colon. But pancreatic cancer screening for a BRCA1 patient like me isn’t one of its specifically listed preventive benefits, further reducing the odds that Medicare will pay.
To double check that, I contacted many OHSU staff members and several experts in hereditary cancer and health insurance, including Pamela Munster, M.D., a top BRCA expert at Stanford University; Lindsay Byrne, a genetic counselor at The James Comprehensive Cancer Center (Munster and Byrne recently appeared in a highly informative AnCan webinar on genetic counseling for families: https://www.youtube.com/watch?v=2UvlUdKPKV8); Lisa Schlager, vice president for public policy at FORCE (an organization that assists people facing hereditary cancer); and Amanda Goodstadt, a senior staff attorney at Triage Cancer (which educates people about legal, insurance, and other issues that arise after a cancer diagnosis). Their view: Medicare isn’t likely to help.
I next looked into clinical trials that might provide a pancreatic MRI for free. Several are currently recruiting BRCA1 carriers, but I kept failing to qualify for the most ironic of reasons: I had either too much cancer or not enough. In some cases, my prostate cancer history excluded me; in others, I lacked the required family history of pancreatic cancer.
Then I tried another route: I canceled the MRI and applied for OHSU’s financial assistance program. My wife and I have little taxable income because we’re delaying Social Security to increase the size of future benefits and living on retirement savings and investments in the meantime. Two weeks after applying, I received a letter from OHSU stating that it had granted me 100% financial assistance for the next 12 months. After that, I can apply again. Medicare’s restrictions suddenly became irrelevant.
I celebrated for about five seconds. Then I read the fine print. OHSU’s policy had restrictions of its own, including certain services considered non-covered or medically unnecessary under Oregon Health Plan rules. I thought, “Oh, shit. Another bureaucratic quagmire.”
It took more than a dozen calls to find the right person, but eventually I spoke to OHSU’s revenue cycle operations manager for the Department of Surgery. Her title is a mouthful, but she turned out to be the key individual in the OHSU hierarchy who could help. I explained my predicament and told her I didn’t feel comfortable proceeding with the pancreatic scan without written confirmation that OHSU’s financial assistance program would cover it.
A few hours later, a written guarantee appeared in my patient portal. Success! My MRI is now rescheduled for December 4, and it’s on the house. Because BRCA1 also raises the risk of male breast cancer, I can use the same financial assistance for an oncologist-recommended mammogram, skin cancer check, and upper endoscopy.
Obviously, this solution won’t work for everyone. And it may not even work for me in a couple of years, once my wife and I start receiving Social Security and no longer qualify for financial assistance. But my hunt for a free pancreatic scan taught me the following seven strategies that may reduce my health care spending in the future—and may save you some bucks now:
1.) Ask hospitals about financial assistance and discounts. OHSU, for example, offers a self-pay rate that cuts 35% off the bill for uninsured patients. 2.) Look for clinical trials that cover the cost. I struck out, but you might not. 3.) Don’t rely on optimistic assurances from hospital employees that your insurer will pay; they’re often wrong. 4.) Don’t waste time seeking guidance through original Medicare’s live chat. I found it useless. 5.) If you’re promised free or discounted care, get it in writing before the procedure—and check the exclusions. 6.) Don’t assume your insurer will pay simply because your doctor strongly recommends a procedure. 7.) Most importantly, keep knocking until the right door opens.
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Sep 1, 2026
Are you in DelMarVa?? Reserve Wednesday night, Sep 16 for an AnCan get-together. We’ll meet for a ‘dutch’ dinner in the Chevy Chase area – location TBD. If you have not received an email invitation and would like to attend, please drop a note to boykin@ancan.org. Partners/spouses welcome!
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best of all our Reminders. Watch our for more details.
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to dr.john@ancan.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: 1) when your pituitary goes dormant 2) is debulking the primary right?
Topics Discussed
Stable disease but treatment leads to one atrophied kidney; is a GU med onc needed at this juncture?; pituitary never recovered post prednisone/abi – what next?; pros and cons of RT debulking for higher volume denovo Mx Gents; Tony Fig’s shoulder surgery; RT cystitis causes hospitalization and deferral of clinical trial; is Testosterone replacement appropriate?; heart issues defer advocating for a PSMA update
Chat
Pierre D., Olean NY sent: 3:11 PM
$50 \hr
Alfredo in Wimberley, TXsent: 3:55 PM
gadolinium
jeff wood sent: 4:04 PM
What are the repercussions of debulking?
RJ Smith (Seattle) sent: 4:07 PM
Standard side-effects and long-term risks of side-effects from the radiation.
Len Sierra sent: 4:20 PM
The Bardo Thodol – Tibetan Book of the Dead — kudos to Dr. John!
Hi-Risk/Recurrent/Advanced PrCa Video Chat, Aug 25, 2026
Substack is coming to AnCan… or maybe AnCan is coming to Substack. We’ll be posting the best of all our Reminders. Watch our for more details.
COMING IN SEPTEMBER… AnCan Heart Group – new support group for all things cardio and open to all! To sign up for Reminder at https://ancan.org/contact-us/. For ProsCard mailing list, please write to rd@ancan.org.
AnCan thanks the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics and Foundation Medicine.
Views expressed in this Recording are solely the opinion of AnCan Foundation, our Moderators and Participants.
AnCan does not accept sponsored promotion. Any drugs, protocols or devices discussed are based solely on anecdotal peer experience or clinical evidence.
AnCan cannot and does not provide medical advice. We encourage you to discuss anything you hear in our sessions with your own medical team.
AnCan reminds all Participants that Adverse Events experienced from prescribed drugs or protocols should be reported to the pharmaceutical manufacturer or the FDA Adverse Event Reporting System (FAERS). To do so call 1-800-332-1066 or download interactive FDA Form 3500 https://www.fda.gov/media/76299/download
All AnCan’s groups are free and drop-in … join us in person sometime! You can find out more about our 12 monthly prostate cancer meetings at https://ancan.org/prostate-cancer/ Sign up to receive a weekly Reminder/Newsletter for this Group or others at https://ancan.org/contact-us/
Join our other free and drop in groups:
Men (Only) Speaking Freely…1st & 3rd Thursdays @ 8.00 pm Eastern https://ancan.org/men-speaking-freely/
Veterans Healthcare Navigation… 1st & 3rd Tuesdays @ 8.00 pm Eastern Schmier Room https://ancan.org/veterans/
Veterans Speaking freely… 4th Tuesday @ @ 8.00 pm Eastern Schmier Room
Editor’s Pick: We burst his bubble that advanced prostate cancer can be cured! 😕
Topics Discussed
Newbie #1 skirts triplet but discuss debulking; Newbie #2 encouraged to rethink surgery decision; PSA falls from HT and RT right ahead; whaddya mean, there’s no cure!?!; RT ‘torture’ (really???) vs ADT for life; GUMO will consider E2; weird disease needs a 2nd opinion; Orgovyx not worth $700 for this Gent; walking helps restore muscle loss; Orgovyx produces different hot flashes; changing ARSI before Pluvicto may rock the boat; personal evaporative cooler demo
Chat
AnCan Barniskis – rick sent: 3:10 PM
Dr. John is at a medical appointment, and Len is on his way home.
AnCan Barniskis – rick sent: 3:28 PM
Orgovyx
AnCan Barniskis – rick sent: 3:35 PM
in that case, we won’t add you to the heart group unless you wish?
Here is a more recent reference https://mydoctor.kaiserpermanente.org/mas/news/a-new-era-in-prostate-cancer-surgery-retzius-sparing-technique-delivers-life-changing-results-2941449
Jim Marshall, Vet Sup Grp. Moderator sent: 4:07 PM
Did 5 years of ADT + Abiraterone and tolerated it quite well. jim
Alfredo in Wimberley, TX sent: 4:09 PM
What did the recent JAMA Oncology ProtecT study show? A 2025 secondary analysis looked at 15-year outcomes in men with localized prostate cancer and compared those with cribriform-positive disease to those with cribriform-negative disease. I The findings were important: Among men with cribriform-positive prostate cancer, the 15-year risk of metastasis was 25% with active monitoring, 26% with surgery, and 8% with radiotherapy plus short-term hormone therapy. Among men with cribriform-negative disease, the metastasis rates were much lower: 7% with active monitoring, 4% with surgery, and 3% with radiotherapy. Overall, cribriform-positive disease was linked to a significantly higher risk of metastasis, while outcomes for cribriform-negative disease were favorable across treatment groups.
Bill Lawler sent: 4:45 PM
Dr. Atish Choudury, Dana Farber
Bill Lawler sent: 4:49 PM
What time?
Jeff Marchi – San Francisco sent: 4:49 PM
3pm pacific
Robert sent: 4:53 PM
My update is not critical I can wait til next week.
Stay in shape with FIT Together in your own living room!
Mark and Kathy Baldridge are avid birders, and as a result, frequent visitors to “Deep Southern Arizona” from their home in University Place, Washington. You may have seen them in an AnCan Group – we’ve been supporting the Baldridges since 2021.
Recently Mark mentioned an at home exercise program in a group, so we encouraged him to tell us more so all AnCan’rs living with cancer could participate… with or without their care partner.
This October 17th, AnCan will participate in the OHSU-Fred Hutch Prostate Cancer Summit. Dr. Kerri Winters is also speaking, and Dr. E (Eleni Efstathiou), the new Chief of Genitourinary Cancer at OHSU, has already set up a time for us to meet. We’ll be writing about the Summit closer to the date. (rick davis)
Back in high school, I did multiple pushups before I went to bed. Fast-forward 50 years and I was unable to do a single pushup. Over the years, I’d fooled myself into thinking I was in ‘decent shape’ because I took long walks several times a week. The truth was that after being diagnosed with osteoporosis, 24 months of Hormone Therapy and a lack of upper body exercise, my overall strength had significantly declined.
Fortunately, I discovered an online exercise program FIT Together for cancer survivors and their partners. FIT Together is a 501(c)(3) nonprofit organization founded in 2014 under the leadership of Dr. Kerri Winters-Stone and Jessica Sitemba. Dr. Winters-Stone has a PhD in Human Performance and has been conducting research in exercise oncology for 20 years. She has run over 15 clinical trials funded by NIH and cancer non-profits. I have participated in two of Dr. Winters-Stone’s clinical trials run through Oregon Health Sciences University – OHSU.
I’ve attended FIT Together classes for a year and can attest that the instructors are excellent. They demonstrate each exercise and then give tips to ensure each participant correctly performs the exercise. The instructors individualize and tailor movements and exercises to accommodate each person’s needs—no matter what the person’s fitness level. For instance, pushups can be performed in many different ways (e.g. against a wall/desk/chair or on hands and knees/feet).
The classes are held twice per week at various times virtually. I love the convenience of performing these exercises at home and look forward to each class. All you need for the classes are dumbbells, a resistance band, stretch strap and an exercise mat. The cost for this equipment is quite reasonable—less than $75.
There are several classes to choose from: strength training, strength/cardio and an exercise class for couples. Classes are very reasonably priced— around $5 per session for a 12 week/24 session class… even less if two of you join together.
I participate in the strength training class and physically feel much better about myself. It’s been really encouraging to see that I’ve slowly gained upper body strength. While I still can’t do a pushup on my hands and toes, I can perform 12 pushups on my hands and knees—I’m on my way to performing a full pushup.
I highly recommend these classes and hope to see some of you in a class—you won’t be disappointed!