(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!”
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!
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?
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. # # #
Most AnCan’rs have never participated in our Advanced Cancer Care Partners Support Group. While relieved that you’re not counted in this group, you are missing a gem. The group is chock-full of compassion and practical suggestions. One of the reasons for that was our remarkable Co-moderator, Pat Washburn, GRHS.
Pat absolutely radiated love and compassion while being none too short of gumption. That’s a polite Britishism for “piss and vinegar,” defined as ‘shrewd or spirited initiative and resourcefulness. ‘ After her dear husband, Marlyn, died in 2017, 5 months after being diagnosed with breast cancer, Pat made it her mission in life to make the world aware of Male Breast Cancer.
She took Marlyn’s car, had it decorated with his photo and Male BCa awareness icons, then took to the road. North, south, east, and west she travelled – every year. People stopped her at gas stations and restaurants; she made the local newspapers and TV stations everywhere. And always it was the same message. “Men get breast cancer, too!”
The world was her oyster, and Pat took the campaign to Europe on several occasions, including Spain and Scandinavia. Her travels were not just about awareness – she visited ‘her men’ and their care partners wherever she went. She also went out of her way to meet the AnCan’rs she’d met through our Group, most recently Alexa and Brian, on her way to Houston. See who else you can recognize below…
By and large, Pat paid for all her advocacy on her own dime. A couple of the male breast cancer organizations with whom she was affiliated did not treat her well. AnCan first met Pat when she reluctantly co-moderated our now-defunct Male Breast Cancer Support Group, disembowelled by one of those groups. Reluctant because Pat thought she’d be intruding on the men, BUT they loved her. At the time of her passing, AnCan was working with Pat and Bill Harris to reinstate the group – we still hope to in Pat’s memory (anyone interested, please reach out to me at rd@ancan.org).
Except when travelling or attending one of her Grandies’ or Great Grandies’ school or sporting events, Pat was always present to support Her Majesty, The Queen of DeNile – our Care Partner Lead Moderator, Susan Lahaie. So when she failed to show at a meeting on Aug 18, we reached out. Pat had been hospitalized after fainting on her face, diagnosed with multiple pulmonary embolisms; she looked like the Lone Ranger. During her hospital stay, those clots travelled to her brain, and Pat suffered a second, fatal stroke last week, elected hospice, and died on October 2nd.
All of us at AnCan are deeply saddened and wish her entire family much comfort. Pat’s entire family doesn’t do it justice. She was truly a matriarch with 35-40 Grandies and Great-grandies. In time, Pat’s memory will always be a warm, embracing memory to all who knew her.
Pat Washburn’s obituary can be found here.
Below is the Virtual Celebration of Life for Pat Washburn, held on November 2nd, 2025
“Someone I once loved gave me a box of darkness” –Mary Oliver
I was at a 12-Step-oriented workshop about grief recently, and it made me think about Men Speaking Freely (MSF). We are vaguely aware of grief in all MSF groups, it hangs over us, and we have at times focused on some specific griefs/losses, such as vitality, or a longer life. It is commonly thought that not thinking about a loss, not talking about it is the manly thing to do. Here in MSF we get relief by sharing our common losses with each other.
The presenter of that workshop, Marcia C., had some ways to specifically talk about grief that were new to me. She gave me permission to use some of her material here. She pointed out some types of losses that I hadn’t realized. For example, the loss of who I would have been if cancer didn’t happen, the grief of estrangement, loss of work, of status, of friendship; the loss of never having had something, that of aging, of trust, or of giving up something.
She said there is “unacknowledged grief” when such losses are never fully brought to consciousness. When I looked at her long list of examples I saw many that I have. We ought to watch for unacknowledged grief.
She described “non-finite” grief, which has no end-point other than death. Ours could be in that category, since as time goes by our loss increases instead of lessens.
Marcia said, ‘’Sharing your grief is a way to receive validation and compassionate witnessing. It can help you begin a path to healing and/or finding a way to live with grief.
Consider the questions below:
1. Are there griefs you haven’t realized you have or have been afraid to face?
2. Are there griefs about which you’d like to share?
3. Do you have grief practices that might be helpful to others?
4. Make a list of griefs you’ve experienced.
5. Choose a tool from the list that might help you process your grief.”
That list of “tools” was long; it included things like: write a letter or poem describing our loss…Create a ritual of letting go…Share with others who have had similar losses…Visit a place that is meaningful…Make or buy a talisman that helps you feel protected…Dance, run, yell to get your feelings out of your body…Plant something in remembrance or as a new beginning…Start a new tradition…Do an intentional funeral… These are ways to bring acknowledged, unacknowledged, and non-finite grief out for a conscious conversation. Moving from covert to overt, with the goal of making a relationship with the loss, and getting rid of the unconscious silent prolonged scream that I, for example, think I harbor.
We think of grief as emotional, but in “Dealing With the Physical Impact of Intense Grief” by Batya Swift Yasgur, the author describes the variety of physical reactions to grief. Ranging from elevated blood pressure to takotsubo cardiomyopathy — sometimes called “broken heart syndrome” — which is a “stress response that balloons the heart.” We often wonder about the reaction on our immune system, and its implications to our overall survival. In fact, probably nearly all our systems react to grief in some way.
There is a fairly new grief-related diagnosis in the Diagnostic and Statistical Manual and the International Classification of Diseases, describing a “persistent and pervasive grief response” that goes on longer than a year., and is now called Prolonged Grief Disorder. In order to be diagnosed with Prolonged Grief Disorder, a person must experience at least three of eight additional symptoms that include “disbelief, intense emotional pain, feeling of identity confusion, avoidance of reminders of the loss, feelings of numbness, intense loneliness, meaninglessness, or difficulty engaging in ongoing life” according to Columbia University’s Center for Prolonged Grief. For an adult to meet the criteria for a PGD diagnosis, the death of a loved one must have occurred at least one year ago, and the symptoms must be present most days since the loss and nearly every day for at least the last month.
Our situation is different from losing a loved one (although it includes that) and waiting for the grief to go away. Instead of a major loss which goes farther and farther into the past, our major loss is in the future. We have sort of a reverse Prolonged Grief Disorder. For instance, I expect my losses to get worse and worse until death.
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.
By and large, Pat paid for all her advocacy on her own dime. A couple of the male breast cancer organizations with whom she was affiliated did not treat her well. AnCan first met Pat when she reluctantly co-moderated our now-defunct Male Breast Cancer Support Group, disembowelled by one of those groups. Reluctant because Pat thought she’d be intruding on the men, BUT they loved her. At the time of her passing, AnCan was working with Pat and Bill Harris to reinstate the group – we still hope to in Pat’s memory (anyone interested, please reach out to me at rd@ancan.org).