(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!”
Like We Didn’t Know…. the value of care partner support groups
Most of our Readers are well aware of the value of a Care Partners Support Group – especially a peer-led one that does not inhibit conversation or stand on ceremony.
The message was partially echoed in an article in the Fall 2026 issue of Cancer Today, Finding Your Own Support . Written by regular columnist, K.J. Bannan. She wonders “if I, as a caregiver, mighthave benefited form similar level of group support” to her mother who died of lung cancer.
At anCan we’d say, definitely YES! But sadly, K.J. is not aware of AnCan and our groups. Now if someone feels like reaching out…
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!
Judy is a retired educator, grandmother, and a passionate traveler, who is an 11-year survivor of Chronic Lymphocytic Leukemia (CLL). The article explores Judy and her husband’s decades of exploring the world together, and both of their individual cancer stories. Judy was a care partner to her husband, Michael, with advanced prostate cancer, who passed from aggressive pancreatic cancer in September 2023.
After her diagnosis, Judy became heavily involved with the CLL Society, volunteering as a support group facilitator to help educate and build community among other patients. She now moderates two AnCan groups, Care Partners and Blood Cancer.
“Judy’s message to others with CLL, whether newly diagnosed or, like herself, living with the disease for a decade or longer: Stay hopeful and stay educated through groups like CLL Society. “Researchers are continually working to identify and develop new treatment options for CLL,” she says. “Staying informed about the latest research and treatment advances can help empower people who are managing their condition and help them sustain hope to continue pursuing what they love.”
AnCan is grateful to the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics, and Foundation Medicine.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: Using Artificial Intelligence (AI) to understand medical information. (bj)
Topics Discussed New diagnosis with history of BPH and Gleason Score of 3+3; MRI false positive, but fusion biopsy detected PCa; health insurance company don’t want to cover treatment for BPH when PCa present; life insurance companies have turned away men with a Gleason Score of 3 +3; Gleason Score 3 +3 is now Gleason Grade Group 1; VA electronic health records not compatible with other electronic health records makes sharing results across health systems difficult; importance of sharing your all of your healthcare information with all of your doctors, let them decide what is important; chose open prostatectomy because penile implant ruled out robotic prostatectomy; active surveillance contemplating active treatment because PSA rose from 7 to 10 over the past year; how do I advocate for myself post-prostatectomy so that my recovery goes as smooth as possible; advice for dealing with radiation proctitis; preparing for a prostatectomy and concerns about Erectile Dysfunction (ED); using Artificial Intelligence (AI) to understand medical information.
AnCan – Rick sent a chat · 8:12 PM
MRI 2nd opinions https://ancan.org/2nd-opinions-for-mris/
RonnieKeys (Sharon,Pa) sent a chat · 8:25 PM
ronniekeys@gmail.com
Larry in AK sent a chat · 8:44 PM
A cheap laptop can be had for ‘way less than $1,000 – maybe $500 on sale. Optical disk (CD/DVD) reader for under $50, sometimes $20 on sale.
AnCan – Rick sent a chat · 8:54 PM
ECE is not automatically T3
Larry in AK sent a chat · 9:07 PM
A well-exercised and well-nourished body withstands the rigors of treatment (ADT, radiation, surgery, whtever) better much better.
Larry in AK sent a chat · 9:14 PM
Sorry, everyone. I gotta go
AnCan – Rick sent a chat · 9:40 PM
You need to run the MSKCC nomograms -http://nomograms.mskcc.org/Prostate/index.aspx
David in Portland, OR sent a chat · 9:52 PM
Add this to all AI questions: When answering, rely only on medically and scientifically credible sources, and provide links to your sources. Double check the accuracy of the links before including them, because you’ve been making a lot of errors lately in inserting incorrect links. Use only PubMed.gov pages as the clickable links in the citations, rather than pasting raw URLs. Avoid weaker secondary sources. Give preference to studies published in the past seven years, especially any meta-analyses and review articles published in well-respected medical journals, but also include any older studies of notable importance. Omit all images.
Ignacio – San Jose sent a chat · 9:53 PM
Thank you!
AnCan – Rick sent a chat · 9:56 PM
Has he had germline testing?
RonnieKeys (Sharon,Pa) sent a chat · 9:57 PM
It’s 9:53 here, and I have an early start tomorrow. Thanks for all your support and interesting discussions!
Jim Ekrut, Ft. Worth TX sent a chat · 10:05 PM
Gentlemen, thanks so much for an excellent and helpful session. I have sent a message to my gastroenterologist about hyperbaric oxygen treatIment. I appreciate your help.
AnCan – Rick sent a chat · 10:08 PM
Paul Maroni Denver, colorado Anschutz https://www.uchealth.org/provider/paul-maroni-md
AnCan – Rick sent a chat · 10:12 PM
Brian Helfand https://www.northshore.org/apps/findadoctor/physicians/brian-t.-helfand
Ignacio – San Jose sent a chat · 10:12 PM
Thank you all for the support and encouragement. Have a good evening.
AnCan is grateful to the following sponsors for making this recording possible: Novartis, Blue Earth Diagnostics, and Foundation Medicine.
WELCOME all to our newly recorded Low/Intermediate Prostate Cancer Group. To receive notice when new recordings are posted, either follow us on this YouTube Channel or sign up to our Blog via https://ancan.org/contact-us/ – check New Blog box.
AnCan respectfully notes that it does not accept sponsored promotion. Any drugs, protocols or devices recommended in our discussions 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
AnCan’s Prostate Cancer Forum is back (https://ancan.org/forums). If you’d like to comment on anything you see in our Recordings or read in our Reminders, just sign up and go right ahead. You can also click on the Forum icon at the top right of the webpage.
All AnCan’s groups are free and drop-in … join us in person sometime!
Editor’s Pick: New prostate cancer (PCa) diagnosis with potential Lynch Syndrome in the family. (bj)
Topics Discussed New diagnosis with potential Lynch Syndrome in the family; exploring genetic testing as well as somatic vs germline testing; be careful about interpreting test results as a guarantee; two types of prostate cancer bioposies—transperineal carries less infection risk; primer on different radiation treatments for prostate cancer; focal treatment carries high recurrence risk with Gleason Score 4+3 or higher; cyber knife, nano knife, heat therapy are forms of focal treatment; things to expect three weeks after a radical prostatectomy; dealing with anxiety following a radical prostatectomy or PSA changes following treatment; Artera AI as a predictor of biochemical recurrence.
Chat
Stuart sent a chat · 7:50 PM
Dr. Ming Zhou Mount Sinai Health System Department of Pathology, Box 1194 Annenberg Bldg. 15th FL 1468 Madison Ave New York, NY 10029 Email: Ming.zhou@mountsinai.org Telephone: (212)241-8881
Stuart sent a chat · 7:51 PM
Dr. Jonathan Epstein – https://advanceduropathology.com/ Tel:516-760-2037 jepstein@imppllc.com
AnCan – Boykin sent a chat · 8:12 PM
Last Low/Intermediate Video Chat on YouTube (same as above) https://www.youtube.com/watch?v=-jMy0byKzdE
AnCan – rick sent a chat · 8:24 PM
Also Jesse McKenney at Cleveland Clinic mckennj@ccf.org Expert on cribriform
AnCan Bill sent a chat · 8:53 PM
stuart@ancan.org & bfranklin@ancan.org
medium.com/@mperloesent a chat · 8:54 PM
Is brachy indicated after sepsis from the biopsy? I’d sure be leery of that.
Steve in Malaysia sent a chat · 9:05 PM
The canadian health system is per province vs national.
Steve in Malaysia sent a chat · 9:05 PM
Sunnybrook in Toronto is the most advanced center and has all modalities including MR Linac
Steve in Malaysia sent a chat · 9:07 PM
i believe there is also MR Linac in Calgary.
AnCan – rick sent a chat · 9:08 PM
We’re aware, Steve. BC is not too bad. Also v. familiar with Sunnybrook/Klotz
Steve in Malaysia sent a chat · 9:08 PM
👍
Bob in Georgia sent a chat · 9:17 PM
I leave next tuesday, preop on Wed, spacor on Thurs
AnCan – Boykin sent a chat · 9:21 PM
boykin@ancan.org
AnCan Bill sent a chat · 9:22 PM
Ask for a referral to Pelvic Floor Physical Therapy.
Bob in Georgia sent a chat · 9:27 PM
Going to Sloan Kettering with Dr Nagar
Mark WV sent a chat · 9:28 PM
nite
AnCan – Boykin sent a chat · 9:29 PM
Good nite Mark!
AnCan Bill sent a chat · 9:33 PM
May 21st at 8 p.m. Eastern is the next MSF.
AnCan – rick sent a chat · 9:33 PM
Next MSF meeting … in this room same time on Thu May 21
Larry S – ADT by estradiol sent a chat · 9:49 PM
Re: When to stop PSA testing. I have not read this yet (it just came into my inbox this morning), but the synopsis looks hopeful for more men getting screened later in life and having those tests INTERPRETED MORE INTELLIGENTLY so as to avoid alarm and unnecessary procedures. https://www.news-medical.net/news/20260428/NCCN-publishes-new-patient-guide-for-prostate-cancer-screening.aspx?utm_source=news_medical_newsletter&utm_medium=email&utm_campaign=prostate_cancer_newsletter_10_may_2026
AnCan – rick sent a chat · 9:49 PM
from Joel…”Got it. Thank you Rick”
Bob in Georgia sent a chat · 9:53 PM
Nite
AnCan – Boykin sent a chat · 9:53 PM
Good night Bob!
AnCan – Boykin sent a chat · 9:59 PM
Artera AI https://artera.ai/
Fritz sent a chat · 10:05 PM
Thanks so much -I’ll report back next meeting. Safe journey everyone
Jim E., Ft. Worth TX sent a chat · 10:11 PM
Have to go for now. Thanks so much!
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.
