(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!”
Erectile Dysfunction After Prostate Cancer Treatment: What Men Should Know
Sexual side effects don’t always get the attention they deserve when men face prostate cancer treatment decisions. At AnCan, we believe men should be as fully informed as possible about these potential consequences and their impact on quality of life. We hope this information encourages men to have these important conversations with their treatment teams before making decisions. – Stuart Jordan
Erectile Dysfunction After Prostate Cancer Treatment: What Men Should Know
Dr. John Mulhall, a leading specialist in male sexual medicine at Memorial Sloan Kettering, warns that men often begin prostate cancer treatment without fully understanding its potential effects on erections, sexual desire, orgasm, and intimacy. His central message: Protecting sexual function should begin before treatment, not after problems develop.
Surgery vs. Radiation: Different Timelines
Even with nerve-sparing surgery, erectile dysfunction frequently occurs immediately. Recovery can take 18–24 months, depending on pretreatment erectile function, the extent of nerve preservation, and surgeon experience.
After radiation, erections may initially remain intact but deteriorate during the second and third years due to progressive blood vessel damage caused by the radiation. Mulhall observes that by approximately three years, erectile dysfunction rates following nerve-sparing surgery and radiation without hormone therapy may become roughly comparable.
The Added Impact of Hormone Therapy
Androgen deprivation therapy (ADT) suppresses testosterone, potentially reducing sexual desire, impairing erections and orgasms, and contributing to deterioration of erectile tissue.
Testosterone may take months or years to recover after ADT ends, and some men never regain their previous levels. Mulhall urges patients to understand ADT’s expected cancer-control benefit and whether a shorter course might be appropriate.
Why Early Rehabilitation Matters
Mulhall warns that prolonged periods without erections may cause irreversible changes in penile tissue, including fibrosis.
His rehabilitation approach aims to maintain regular erections while nerves recover, using medications such as tadalafil (Cialis) or sildenafil (Viagra), or penile injections when pills fail. However, evidence that these approaches restore long-term spontaneous erectile function remains limited.
Other Important Considerations
Recovery depends partly on age, pretreatment erectile function, and conditions such as diabetes, cardiovascular disease, sleep apnea, and low testosterone.
Sexual function involves more than erections. Orgasm may remain possible despite ED, although its intensity or sensation may change. Performance anxiety can complicate recovery, while alternative forms of intimacy can help sustain relationships. Penile implants are an option when other ED treatments fail.
What Men Should Do Before Treatment
Mulhall strongly recommends that men concerned about preserving sexual function consult a sexual medicine specialist before beginning prostate cancer treatment, rather than waiting until problems develop.
Questions to Ask Before Treatment
Given my health and current erectile function, what can I expect at one, two, and three years?
With surgery, how much nerve sparing is possible, and what are my surgeon’s outcomes?
With radiation, what is my risk of delayed ED?
With ADT, what’s the added cancer-control benefit, and how long could side effects persist?
What rehabilitation and sexual medicine support is available?
How might treatment affect sexual desire, orgasm, ejaculation, penile length, and intimacy?
The essential takeaway: Men should understand their potential sexual side effects and have a plan to preserve sexual function before choosing prostate cancer treatment—not afterward.
Source: This article summarizes an interview between Dr. Geo Espinosa and Dr. John Mulhall on the Dr. Geo Prostate Podcast. Listen to the full episode at https://dr-geo-prostate-podcast.captivate.fm/. Our thanks to Low/Intermediate PrCa Moderator, Stuart Jordan for writing this up stuart@ancan.org
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!
A New Option for Intermediate-Risk Prostate Cancer — and Why It Matters
By Stuart Jordan
A clinical trial exploring a new treatment option for intermediate-risk prostate cancer has produced a striking result. Across 42 patients enrolled in the RTIRE trial at Weill Cornell Medicine, none of the 12-month biopsies showed evidence of recurrent cancer. That outcome is now driving a major Phase III randomized trial — called IRRADIANT — launching at some of the top cancer centers in the country, including Memorial Sloan Kettering Cancer Center, Weill Cornell Medicine, Moffitt Cancer Center, Fox Chase Cancer Center, UT Southwestern, and Mayo Clinic (MN & AZ).
I was fortunate to be one of those 42 patients. And I want to tell you why I chose this trial, what the experience was like, and what it may mean for men in our community who have been diagnosed with intermediate-risk prostate cancer — Grade Group 2 or 3, or in Gleason terms, 3+4 or 4+3 — and are considering their treatment options.
The core problem RTIRE was designed to solve is one that AnCan knows well. Focal treatments are appealing — less invasive, fewer side effects, and faster recovery. But recurrence remains a significant concern, and RTIRE was designed specifically to address that challenge. It combines IRE, a precise nonthermal ablation of the dominant lesion, with reduced-dose MR-guided radiation to cover the entire prostate. Think of the IRE as a boost — targeting the most aggressive area with intensity — while the radiation handles the rest of the gland with less total dose than standard SBRT. The goal is to achieve cancer control comparable to whole-gland treatment while reducing side effects.
When I brought this to AnCan two years ago, the group was skeptical. The questions were fair: why take the risk of focal when standard SBRT has a strong track record? And if you were going focal, why add the complexity of a clinical trial? I had my reasons — the credentials of Drs. McClure and Nagar, the MRLinac technology at MSK, and frankly, the logic of addressing the risk of recurrence directly rather than accepting it as a given. The group respected my reasoning without necessarily agreeing with it.
Today, they are the ones asking me to share this story.
My own outcome has been encouraging: a clean 12-month biopsy, consistently low PSA readings, a clean MRI and PSMA scan, manageable urinary side effects controlled with medication, no bowel issues, and some sexual-function changes, which can occur with virtually any prostate cancer treatment. I am not cured. I remain under routine surveillance and am currently considered low risk, and I have no regrets about the path I chose.
IRRADIANT is now open and enrolling. The trial is randomized, so participants have a 50/50 chance of receiving either the IRE boost plus reduced-dose SBRT or standard SBRT radiation treatment alone. If you have been diagnosed with intermediate-risk prostate cancer and are weighing your treatment options, I am happy to discuss further. Reach out during our session or email me at stuart@ancan.org.
RTIRE – trial details and results‑related info
1. ClinicalTrials.gov – official RTIRE registry (Phase II)
Includes protocol, dose (32.5 Gy/5 or 22 Gy/2), eligibility, endpoints, and status. https://clinicaltrials.gov/study/NCT05345444
2. BMC Urology protocol paper (PubMed)
Full write‑up of the RTIRE Phase II design, rationale, and planned outcomes; registered as NCT05345444. https://pubmed.ncbi.nlm.nih.gov/39054460/
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.
A relatively new year, new guidelines, and new tools for prostate cancer screening and monitoring.
In recent months, the AUA updated its 2023 guidelines specifically for early detection of prostate cancer (https://www.auanet.org/guidelines-and-quality/guidelines/early-detection-of-prostate-cancer-guideline). Along with those guidelines, two other organizations have updated or developed additional tools that are beneficial to all men, regardless of where they are on the prostate cancer journey (or even those not yet on a journey).
Consider them collectively as an introduction to screening (NCCN), an AS-focused source (ASPI), and a comprehensive guide for early-stage prostate cancer.
I would not consider any of them as a standalone product for all the information a man might need. The NCCN guidelines are focused on screening and are relatively basic. ASPI’s product is focused on AS, but some may find the scope and scale of information a bit overwhelming without someone to advise and assist them. The appendix at the end of the pamphlet would be exceedingly useful for anyone beginning their prostate cancer journey. Finally, the AUA guidelines are broader and developed more for urologists.
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.
