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“I have come to appreciate why doctors find self-directed patients challenging, if not downright difficult. I wish all docs would engage with us, hear us out, and offer an explanation and further discussion when they disagree. The doctors I choose to work with seem to understand and respect my efforts, which is why I entrust my life to their care.”
Murray Keith Wadsworth is a patient advocate and author of Prostate Cancer: Sheep of Wolf?
He shares his story and discusses his KevinMD article, “Urging patience with patient self-advocacy.”
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Transcript
Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. In today’s show, we have Murray Keith Wadsworth. He is a patient advocate, and he’s the author of the book Prostate Cancer: Sheep or Wolf? He wrote the KevinMD article titled “Urging patience with patient self-advocacy.” Murray, welcome to the show.
Murray Keith Wadsworth: Good morning, Dr. Pho.
Kevin Pho: So we’ll get into your article in a little bit. First off, briefly share your story and journey to where you are today.
Murray Keith Wadsworth: Certainly. I’m a 65-year-old grandfather in very good health, very fit, very active, other than being a prostate cancer, melanoma cancer patient. With the prostate cancer, I’m post-prostatectomy and post-salvage RT, I went over to Europe for some imaging, and I’m post-salvage lymph node surgery. In the last four and a half years, I’ve been in the gray area of NED.
Back at the time of my diagnosis, I was 57. I was living in England. I had a business there, and I was enjoying the hills south of London, cycling and biking, enjoying Europe, having my kids come over and friends come over and visit. And then the diagnosis changed that. I ended up jumping into an RV back home here in the States. Prior to all that, I was a longtime Texas resident and raised my two children.
Kevin Pho: All right. So tell me about that time of diagnosis. How was your prostate cancer diagnosed?
Murray Keith Wadsworth: Officially by biopsy, of course. Informally by the digital rectal exam. I had those for a number of years, and they were always clear. I was in England, and it was time for another check, and rather than come home, I decided to have it done over there. I sought out a urologist, and he did the exam very differently than I had had it done in the U.S. Very briefly, instead of bending over on the table, as I was always told, he had me up on the table, brought my knees to my chin, had me try to rotate the prostate gland a little bit, and he felt the lesion. That led to an MRI, which led to the biopsy and the diagnosis.
Kevin Pho: And during your prostate cancer journey, tell us about, in general, some of your interactions with the health care system.
Murray Keith Wadsworth: Extensive, actually. I spent a year trying to decide on my first treatment, so I saw too many doctors here in Texas and a number of doctors in Europe. I was looking at alternative treatments, focal treatments that were not yet approved in the U.S. that you could get in England and other countries. They actually told me not to have focal treatment. They pointed me back to surgery. They turned away private cash, because I was a private patient.
Overall, all the meetings were good. One of the things I learned is that with the doctors in Europe, when you’re a private patient, they have more time for you. The doctors here in the U.S. were busy. I know you all are busy, but there are a lot of constraints.
Kevin Pho: So tell us about those contrasting systems. This is in the United Kingdom. You’re a private patient there, and you said they have more time for you. So just give us a contrast of the interactions over in Europe versus what you experienced in Texas.
Murray Keith Wadsworth: Certainly. As I came to explain it, the doctors in Europe are under their national health care systems that we label socialized medicine. So they get their salaries, and they see X number of patients a day, or they’re under quotas; it’s a minimum number. But beyond that, if a doctor wants to earn more money, they see private patients, and you see them outside of the health care system.
My first appointment with the urologist was on a Sunday, which I thought was quite strange, but he explained it. He said, “I’m in private practice, and this is when I make my money.” They’re also not seeing a high volume of private patients, so they just naturally have more time. That first meeting, I was in the lobby. The doctor came out, introduces himself by his first name, and takes you back. They skip the blood pressure, height, and weight questions. I’m there to talk about cancer. They sit down, and they begin a casual conversation. It takes as long as we need for it to take, and that was always repeated over there.
Kevin Pho: All right. So you continue your story in your KevinMD article that’s titled “Urging patience with patient self-advocacy.” Now, for those of you who get a chance to read your article, just walk my audience through it and share the story of why you decided to write it.
Murray Keith Wadsworth: So it was a timely article. I had just met and agreed to work with a new radiation oncologist here in Houston and an internist. I hadn’t seen a GP in seven, eight years, and I’m setting up a new base for my daughter. So here I am, this patient with a lot of medical records surrounding my prostate cancer, and I’m doing monthly PSA testing and other things.
So I walked in to the radiation oncologist, who I had chosen through referrals and other research methods, and I shocked them. I brought in things he wasn’t familiar with, because they’re not practiced here. I brought imaging results from Europe, etc. It was awkward. I wrote in the article that I wasn’t sure if I was going to storm out or if he was going to throw me out. We were really like two boys on the elementary school playground.
Kevin Pho: Now, go into more detail. What exactly did you bring up that shocked them?
Murray Keith Wadsworth: I walk in with, so why am I here? I have a PSA of 0.03, well below clinical guidelines in the U.S. for any concern for biochemical recurrence. I show them my monthly PSA tests. I’ve been self-testing monthly for three or four years now, showing what is a gradual climb. After my salvage lymph node surgery, my PSA was less than 0.06, where a lot of doctors don’t even want to talk. Then I moved up to the 0.01 range for a short part of a year, and then the 0.02 range, and I’ve been in the 0.03x range, testing out to the third decimal point, for almost a year and a half. It’s a lot of data, and I have a graph. I said, “This is what I’m looking at,” again, outside of clinical guidelines.
And then I had the discussion that I had salvage lymph node surgery in Belgium. That’s really not a procedure that, as I understand it, is done very much in the U.S. Why would I do that? Well, I didn’t want ADT or chemo. I’m still trying to be curative. So we had to work through that. And then I mentioned that I’m working with some supplements directed by a DO, trying to theoretically go after cancer stem cells. So these are not things the typical patient would bring to the table.
Kevin Pho: So what happened next? You brought up your history, you brought up what you had been treated with and the procedures that you had undergone, and the medical team in Houston was a little bit taken aback, so to speak. What happened next?
Murray Keith Wadsworth: This doctor, I’m working with him. I’ve met with him since then. He gave me an hour; we spent an hour together, and he was just puzzled by what I was doing. We went through a phase where he asked me if I was trying to play doctor, and I said, “No, but I’m trying not to have this happen to me.” What he did is he listened, but he challenged and he questioned, and he was uncomfortable. I’m not faulting him. Here I am, presenting all of this.
And then I realized, I asked myself, “Why does he think I’m here? In today’s world of threats and lawsuits and all of these kinds of things, what have I triggered?” So I calmed down. I backed out, and I said, “This is just what I have.” So we slowed the conversation down. We went back to my graph, and he just says, “I’ve never seen this. No one would ever do this.” But he says, “It’s factual data.” I have all the backup data from all the lab reports. And he said, “We can’t dispute what we’re seeing.”
And so we began. Because I had pelvic mets removed at 0.1, a PSA of 0.1, this done in Belgium, I clearly have cancer below 0.2 or even below 0.1. So we had the discussion that maybe this graph and this PSA is an indication of cancer. Maybe it’s not; we don’t know. And then we said, “What do we want to do?” And then we continued on: Should we radiate or not? We had a wonderful discussion at that time, and we still have chosen not to radiate.
Kevin Pho: So what’s the situation today?
Murray Keith Wadsworth: I’m monitoring my PSA every four to six weeks. The current strategy the doctor and I agreed to is, if and when my PSA rises to 0.05, I will be straight back to him. I also came into that meeting with the gallium-68 PSMA PET results, done in December of last year, self-paid, inside the guidelines of when it would normally be done, but I got it to happen. And so, again, what patient brings in that kind of imaging, done at a PSA of 0.03?
He then agreed. He’s working now with the Pylarify PET, so we had the Pylarify. Both of those showed clear. So we’re going to wait and see if the PSA rises to 0.05, and if it does, we’re in agreement we’ll probably image again, and maybe discuss radiation at that time if the imaging doesn’t show anything.
Kevin Pho: So it sounds like after the initial period of discomfort, you and your medical team came to an understanding. The medical team was willing to listen to you, even though they had never heard of that before. Is that fair to say?
Murray Keith Wadsworth: That’s fair to say.
Kevin Pho: Now, that interaction, would you say that’s typical of your other health care interactions in the United States, or was that outside the norm?
Murray Keith Wadsworth: That is. It’s not atypical of my interactions. Prior to the diagnosis, I’d see a GP, and those were always fine and comfortable. I’m not on any prescription drugs, never have been, no ailments, so I’m in great health. So how can that conversation go wrong? When I began seeking multiple opinions and having my questions, that is when I started having difficulties.
The initial pathology that I had was a Gleason score of 3+3. There’s a lot written in medical documents and journals that maybe you don’t treat 3+3, yet my surgeon said I should go get surgery the next week. That was his recommendation. So I kept seeing other doctors on that, and that, unto itself, I’m questioning things. I have found when you go to a doctor and you’re questioning standard practice, they were not always comfortable with me. A couple of times, I said no to doctors. I did not like the procedures they wanted to follow, to be candid.
Kevin Pho: I’m going to ask you for some advice, both from the patient side and the clinician side. So first, from the clinician side, if doctors were to see patients like yourself, definitely empowered, bringing your data, bringing in suggestions for therapy that the physician may not be comfortable with, what kind of advice do you have for us to better listen to?
Murray Keith Wadsworth: My first advice would be to evaluate what we’ve brought you. So when I’m there with imaging results, a radiotherapy, a radiological report, and I’m there with my blood test results and I have graphed them, that’s hard data that really can’t be disputed as being factual as presented. So if you’re presented that, take a moment with it. Even though it’s outside of the clinical practice, take a moment with it and look at it and say, “What am I looking at here? I’m looking at a man that has three years of almost monthly PSA testing. Wow, I’ve never seen that before,” and almost embrace it. Not that you can do anything with it, but just see it that way. And the imaging results: “Never seen these. Can’t do this in the U.S. No insurance company would pay for this, so we don’t commonly do this. But I’ll read it. I’ll understand it.”
That would be my first piece, if it isn’t. And I learned, when I came in and I would speak as an advocate, that I had to back myself up. I can’t say, “Oh, I read an article in the newspaper,” or, “I saw a commercial on television, and I want to do this or that.” I was factually backed up. So that would be my first piece of advice.
Kevin Pho: Now, from the patient side, and you did mention a little bit about bringing data and evidence to back up your advocacy. So from the patient standpoint, what other piece of advice can you give for patients who want to advocate more for themselves in the exam room?
Murray Keith Wadsworth: Certainly. Appreciate that the doctors have very little time for us; that’s our system. And appreciate that the doctors have to work within standard clinical guidelines, and if you want to discuss anything outside of that, you’re putting the doctor in a very awkward position and perhaps even seemingly threatening them in some way, because this is part of our reality today. So work that out in yourself.
As I mentioned in the article, when I went and saw the internist, I didn’t have any difficulties there, but I changed my whole demeanor. I was much more relaxed. I wasn’t trying to defend my position at all. I went in defensively at times. I went in too proud: “Look what I have, and please validate what I have.”
And so my last thought to another patient would be, don’t seek validation of what you have, because that’s going to focus you on the wrong things, because what you have may be wrong, or it may not be relevant. It’s very possible it’s not even of any value. We just think that it is, because at times these patients were pretty desperate, particularly with cancers. You’re pretty scared, so you’re grasping sometimes, and I had to be sure I was impressed and go through that process.
Kevin Pho: When you said that you had to be sure that you weren’t grasping, what did you do to solidify your position?
Murray Keith Wadsworth: I talked with my daughter a lot, who’s a doctor herself, and went over things with her. And I have a dear friend who I mention in the book. She’s also a doctor, a breast cancer specialist, so parallel in many ways. And then with just a longtime friend of mine, you know, my buddy Jeff, I could say, “I need to be sure my ego’s not involved in this. I need to be sure I’m not denying what may be happening to my body. So let me talk to you. Let me go through it with you, because I’m being a bit challenging at times to standard clinical practice.”
And then I would look inward and just ask myself, “What on earth am I doing? Who do I think I am? I’m not a doctor. I don’t pretend to be a doctor.” I don’t decide on treatment; I just agree to it. If a surgeon is going to do surgery on me, the surgeon’s decided to do the surgery. I just have to say yes or no. I just sign a piece of paper. That’s the extent of my role. But I have to be clear on what I’m trying to accomplish here, and denial pops into one’s head. There were times, I think, I saw too many doctors and did a little too much reading, and it was a form of denial rather than just saying, “Here’s where I’m at.”
Kevin Pho: We’re talking to Murray Keith Wadsworth. He’s a patient advocate, and his KevinMD article is titled “Urging patience with patient self-advocacy.” Murray, what are some of your take-home messages that you want to leave with the KevinMD audience?
Murray Keith Wadsworth: I think, paraphrasing this new-to-me radiologist, radiation oncologist I should say, if, as a patient advocate, I’ve done my patient work right, there’s the potential that a doctor could learn from us, particularly if we’re outside of standard clinical practice. The radiation oncologist said to me, “I’ve learned from you,” and I took that to heart, and I have to be sure what I’m doing. So that would be my comment: You might actually learn from us if we’ve done our part right, but we have to do our part right first.
Kevin Pho: All right. Thank you so much for sharing your story, time, and insight, and thanks again for being on the show.
Murray Keith Wadsworth: You’re welcome. Thank you.
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