by Rick Davis | Nov 5, 2026 | Active Surveillance PCa, Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Health Resources, High Risk/Recurrent/Advanced, High Risk/Recurrent/Advanced Prostate Cancer, hospice and palliative, Low/Intermediate Prostate Cancer, Men 'Speaking Freely', Men's Breast Cancer, Multiple Sclerosis, Pancreatic Cancer, Prostate Cancer, Recent News, Sarcoidosis, Thyroid Cancer, Uncategorized, Visual Snow Syndrome
Build Trust – Be Your Own Best Advocate!
(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!
Where there’s smoke, there’s fire. Two pieces in Sept. 8, 2026 JAMA Internal Medicine caught our digital eye. Rebuilding Trust in the Patient-Physician Relationship (Viewpoint2) and Rebuilding Trust in Medicine Requires Structural Change (Editorial3) reiterate the essence of what AnCan strives to achieve – navigate our participants to “Be Your Own Best Advocate”.
The Editorial opens with these words:
“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
- Rebuilding Trust in the Patient-Physician Relationship Rotenstein, L et al, JAMA Network Internal Medicine, Sep 8 2026
- Rebuilding Trust in Medicine Requires Structural Change Richman, I et al, JAMA Network Internal Medicine, Sep 8 2026
- Evaluating the impact of virtual peer-led support groups on prostate cancer survivorship—The AnCan experience Antonucci, J et al GU ASCO 2026 Poster & Abstract
Comments
(Larry F) ….. Right on, ANCAN!
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!”
by Kiernan Mehan | Oct 6, 2026 | Cancer Resources, Inherited Mutations, Pancreatic Cancer
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.
—David Sharp
by Rick Davis | Aug 11, 2026 | Active Surveillance PCa, Blood Cancers, Cancer Caregivers, Cancer Resources, cardio-oncology, Exercise, High Risk/Recurrent/Advanced Prostate Cancer, Low/Intermediate Prostate Cancer, mCRPC, Men 'Speaking Freely', Men's Breast Cancer, mHSPC, Multiple Sclerosis, Ovarian Cancer, Pancreatic Cancer, Prostate Cancer, Thyroid Cancer, Uncategorized, Women's Breast Cancer
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!
by Rick Davis | Mar 25, 2026 | Advocacy, Blood Cancers, Cancer Caregivers, Cancer Resources, High Risk/Recurrent/Advanced Prostate Cancer, Low/Intermediate Prostate Cancer, MedaFit, Men 'Speaking Freely', Multiple Sclerosis, Ovarian Cancer, Pancreatic Cancer, Prostate Cancer, Uncategorized, Visual Snow Syndrome, Webinars
AnCan Keynote at Houston Methodist, Aug 2024 – Can you hear us? Amplifying the patient voice.
Can You Hear Us?? How AnCan helps patients make their voice heard – amplifying the patient voice!
Rick Davis gives keynote address at Houston Methodist Neal Cancer Center 12th Annual Cancer Symposium. August 2024.
by Hannah Garrison | Feb 27, 2026 | Advocacy, Blood Cancers, Brain Tumors, Cancer Caregivers, Cancer Resources, Exercise, Health Resources, High Risk/Recurrent/Advanced Prostate Cancer, Low/Intermediate Prostate Cancer, mCRPC, Men 'Speaking Freely', Men's Breast Cancer, Mental Health, mHSPC, Multiple Sclerosis, Pancreatic Cancer, Prostate Cancer, Recent News, RMC, Sarcoidosis, Veterans
Rarity Life Magazine Feature: Rick Davis

AnCan’s ambitious CEO and Founder, Rick Davis, recently sat down with Rarity Life, the magazine published by Same But Different Creative, to share the deeply personal journey that led to the creation of AnCan.
In the interview, Rick reflects on his early days navigating a prostate cancer diagnosis — a moment that reshaped his life & his understanding of what true support should look like. Like so many survivors and thrivers, he quickly discovered that information alone isn’t enough. What people often need most is connection — the chance to speak openly with others who truly understand the lived experience of cancer.
That realization became the foundation of AnCan.
Rick shares how traditional support models don’t always meet people where they are. Geographic limitations, physical health challenges, financial strain, rare diagnoses, and even the emotional weight of walking into an in-person group can all create barriers. For many, simply showing up can feel overwhelming.
AnCan was built to remove as many of those barriers as possible.
Rick’s full interview in Rarity Life offers an inspiring look at leadership shaped by lived experience, and a reminder that meaningful change often begins with one person asking: How can we do this better?
Read more stories & Rick’s article here:
https://www.samebutdifferentcic.org.uk/raritylife
by Rick Davis | Feb 19, 2026 | Active Surveillance PCa, Advocacy, Blood Cancers, Cancer Caregivers, Cancer Resources, Health Resources, Men's Breast Cancer, Pancreatic Cancer, Prostate Cancer, Recent News, Thyroid Cancer, Uncategorized
Telehealth gets extended through 2027!
As some of you may know, the liberal telehealth rules to conduct medical appointments remotely that were enabled during Covid, sunsetted late last year. AnCan was upset and vocal that many of our patient advocacy organizations active on The Hill did not campaign more widely to extend it. Organizations like ZERO (prostate cancer) have significant and expensive government relations groups precisely to address such issues on behalf of us patients. AnCan had to bring it to ZERO’s attention to move the ball at a time when ZERO’s high paid CEO was self-admittedly sleeping on the switch.
Telehealth was temporarily extended for those living in rural areas. Then one of our newly minted prostate cancer Moderators, David Sharpe, brought it to AnCan’s attention that legislation was passed on Feb 3, 2026 that has extended comprehensive telehealth through the end of 2027. We asked David to blog its welcome return to wider availability and tell his story around telehealth – thank you Mr. Sharpe!
Medicare Telehealth Coverage Is Extended
The federal government has restored Medicare coverage for telehealth until the end of 2027. That means you can now possibly consult with your doctors online rather than having to meet with them in-person.
Why did I say possibly? Because state medical licensing laws still apply. Often, they can undermine your doctor’s ability to join you on the call. Here’s why: (Don’t construe the following comments as legal or medical advice. This is general information only.)
Telehealth consultations are easiest to arrange when a patient and doctor are in the same state. For instance, if you live in Springfield, Illinois, and want to have a virtual chat with an oncologist in Chicago, no legal impediments are likely to stand in your way.
Things can get tougher if the doctor practices in another state. Physicians are typically required to be licensed in the state where the patient is physically located during the consult. Therein lies a common problem: the doctor is licensed in one state, and you’re in another.
But loopholes exist. According to the Center for Connected Health Policy (CCHP), “A few states have licenses or telehealth-specific exceptions that allow an out-of-state provider to render services via telemedicine in a state where they are not located, or allow a clinician to provide services via telehealth in a state if certain conditions are met (such as agreeing that they will not open an office in that state). Still other states have laws that don’t specifically address telehealth and/or telemedicine licensing, but make allowances for practicing in contiguous states. . . .” For specifics about your state’s rules, explore CCHP’s handy state-by-state guide: https://www.cchpca.org/topic/cross-state-licensing-professional-requirements/.
Despite those exceptions, many physicians and medical centers require patients to be in the same state as the doctor during telehealth appointments. I wish I’d known that last year, before trying to set up virtual consultations from my home in Portland, Oregon, with Fred Hutch (Washington), UCSF, City of Hope (both California), and MD Anderson (Texas0—all of whom turned me down. Oregon Health & Science University (OHSU, Oregon)) would have refused, too, if I had been in any other state.
But some physicians and hospitals were more relaxed about it. Despite remaining in Portland, I wrangled a telehealth visit with a UCLA specialist. Two AnCan buddies of mine in Oregon and Arizona did so as well. I had even better luck with out-of-state doctors in community practices. Two agreed to confer with me online, and one declined.
If you live near—but not in—the state where your doctor practices, perhaps the easiest option is to make a run for the border. One AnCan member has adopted that strategy as a convenient means of communicating with his faraway medical team in an adjacent state while also satisfying the legal requirements. To have that meeting, he travels a few miles from home to a casino just across the state line; the casino lets him conduct telehealth consultations there. That approach shaves hours off what would otherwise be a protracted road trip to talk with his doctors face-to-face. # # #
David Sharp davidsharp1@me.com