This is the story about how I used my skills as a Decision Professional (DP) to navigate through decisions pertaining to my treatment choices for prostate cancer. The outcome was good, I’m fine. More importantly I think, I came away from that experience with a much better understanding of myself, my profession, the medical community, and how these entities interacted in the process. I ultimately made my treatment decision with confidence and walked through the door to the treatment center with nary a waver in my resolve (more about that door later). Given I’m human and this was cancer, I thought that my confidence in my decision was pretty special and still do. I’m sharing this experience so others may have the opportunity to take advantage of what my profession has to offer.
The adventure started in late 2012, my 55th year on Earth. A routine Prostate Specific Antigen (PSA) test came back elevated, rising from a 1 the prior year to an 8. A follow-up test put me at a 10 and resulted in a referral to the urology department for further evaluation.
Being the sort of individual I am, I prepared for the urology visit by reading volumes of material on PSA tests, prostate cancer, and the statistical odds I was facing. I wanted to know the rules of the game for myself.
Based on that information and the two PSA test results, I calculated that I had somewhere around a 45% chance of having cancer. Just about the same as a coin flip. After this research effort, lessons one and two came about.
Lesson one. Confirm your information sources
The information available on line and in print at that time was all largely the same, literally copy and paste in a lot of instances. Some materials were more detailed than others, but there was very little difference at all. As a DP, that’s a red flag for me. Was I seeing group think here or was the data just that consistent?
I eventually found a book that presented a slightly different view, but the authors (a doctor-patient duo) presented it in such a sensational way that I had a hard time grasping any significance to what they had to say other than the idea that they didn’t like the current approach to treating this disease.
It should be noted that I recently revisited the web looking at available data and it has improved significantly in recent years.
Lesson two. Beware of averages and do your math
Everything I read dealt with the “average male”. I was immediately reminded of a macroeconomic concept called “economic man”, an academic model of what a rational human should do in response to changes in an economic world. The problem is the economic man concept doesn’t work well in individual cases, and I doubt if the average male confronted with cancer will either. There’s a thing called emotion that gets in the way of rational decision making and it’s very hard to account for that in a simple model.
I had also read The Flaw of Averages by Sam Savage and was keenly aware of the damage relying on averages alone can cause.
Armed with my newly acquired education, I met with the urologist. A bright early career woman looking me straight in the eye with a no nonsense attitude yet very respectful and empathetic. I thought “OK, we’re on the right track here, I like her”. As we progressed through the discussion, the information exchange paralleled what I had learned in my readings sans the statistics. So far so good, I’m feeling in control. After the exam, she stated that she thought something was there and recommended another test for a specific urinary protein. That urinary test came out positive.
With 3 tests, the exam and the statistics from my research, I now updated the estimate of my chance of having cancer to the 95–99% range. My determination is mounting. I didn’t feel particularly nervous, just determined to “fix this”.
After receiving the urine test results, the urologist called me to recommend a biopsy and scheduled an appointment. I inquired as to the need for additional information, given the high probability that I had cancer. Her response was that the tests were indirect indications of cancer, not confirmations. A good answer and a reminder to me of what I should have known as a DP.
She also stated she believed I had a 30% chance of having cancer. Why the big discrepancy between our probability estimates? Methods available to doctors at that time did not account for the improved statistical accuracy achieved by doing multiple tests. The tools used only the most recent test to estimate the probability. At one point in our conversation, I drew a diagram with her pen on some exam room paper to illustrate the concept of increasing confidence with multiple tests. She was not fully aware of this statistical method but quickly understood it and kept that piece of paper.
As a concluding note on this lesson, PSA tests are not wrong or right, they are just indicators of what might be possible. All indicators are inaccurate to some extent, you just need to treat the information from them appropriately. Contrast that to the current global narrative about PSA tests being inaccurate and the cause of unnecessary treatment. The test doesn’t decide on treatment, people do. The current dialog about PSA tests is sending precisely the wrong message to all concerned. PSA information is valuable when used appropriately and can lead to good quality health care decisions.
Lesson Three. Understand the data
In this entire story, the biopsy experience is the most traumatic part. I hesitate to describe the experience in this way for fear of scaring off patients who need one, but it’s key to the story.
As we prepared for the biopsy procedure, the attending nurse reached over and turned on some soft music. The biopsy method is simple enough, but the sound the sampling implements make are very disconcerting. I was warned about the sound, but was not truly prepared for it. It sounds a bit like a snapping rubber band. It snapped exactly twelve times, trust me on that. “Thank you doctor! May I have another?” I now understood the reason for the music too.
As I drove home from the biopsy appointment, that snapping sound was all I could recall even though I had not been sedated. A dull aching sensation slowly began to take control of my attention as I got home. As the anesthetic wore off, the aching increased dramatically. The only relief I could get was by walking. I walked many miles that afternoon! What was worse, my wife unknowingly had booked dinner at a local restaurant with relatives that night. I had to sit in a hard wooden chair for two full hours. I had four drinks that night, the first two were doubles I think. Overnight the aching subsided and I was doing well the next day, but still in a bit of shock about the event.
While waiting for the biopsy results, I continued my research, even going so far as purchasing materials on prostate cancer protocol meant for medical professionals.
At the appointed time, I met with the urologist to discuss the results, again armed with lots of new material.
The results were positive, four of the twelve samples were cancerous. In addition, what is called the Gleason score indicated a moderately aggressive tumor. My determination immediately peaked, it was time for action in my mind. Once we got through the test results, the treatment protocol I had studied kicked in full force and almost verbatim.
After giving me a moment to digest what I had just been told, the doctor started off the conversation with the following comment.
“Mr. Neal, let me first say that more men die with prostate cancer than of it”.
This rather benign statement is completely true but with a bit more analysis it produces a rather insidious fact. Based on the information I had at the time, 3% of all males tested died from prostate cancer. Putting this a little differently, 97% of men tested do not die of prostate cancer, thus the statement is true. While this may sound encouraging to most people, my training as a decision professional immediately brought up a red flag. This information is not conditioned on those who have tested positive for prostate cancer, and it is therefore inflated by including those who tested negative.
What happens when we filter out those who have tested negative for prostate cancer (for simplicity, we will ignore the accuracy of the test)? It turns out that 15% of men test positive for prostate cancer. This means that for every 100 men, 15 will test positive. Of these 15 out of 100, x % will die of cancer, resulting in 3 deaths out of 100. We can now construct a simple equation for this:
15 * x% = 3
This results in x being 20%. This is the conditioned probability of dying of cancer, and it is conditioned on the fact that one has tested positive for prostate cancer. In other words, one out of every five men (or 20%) that had prostate cancer died from it. That’s a pretty sobering statistic. Once you cross that line of a cancer diagnosis, the game becomes much more serious.
Let’s think about that last piece of information in the context of my personal risk tolerance by framing it up in a slightly different way (another thing DP’s do to help clarify the understanding of a piece of information). Let us say there’s a new road from point A to point B. It gets you there more quickly than the old route, but 20% of all people that drive on that new road are killed in route. This is roughly a statistical equivalent to playing Russian roulette with a six shooter. Knowing this statistic, would you voluntarily take that new road? I personally do not accept risks of that magnitude and I will find an alternative to reduce my chances of dying from this cancer.
We have to remember here that the statistics I’m relying on are about a subset of the entire male population (those that had been examined for prostate cancer). They say nothing about my age, the type of prostate cancer (there are many types), or my medical history. It’s just an available set of numbers with no particular relevance to me other that fact that I’m a guy, I was examined, that’s it. There is no data specific to a 55 year old slightly over weight white male, raised in a pre-environmentally conscious oil town, globally traveled, and married to a breast cancer survivor. Wish there was, but there isn’t. If we did have that specialized set of data, would my numbers be better, worse, or the same? We don’t and can’t know, we just have to assume these numbers apply and work with them in an informed way.
Lesson Four. Know what you want to achieve
As I began to consider my possible courses of action, I needed to determine my objective for seeking treatment, or not. We do need to remember that not seeking treatment is always an option. It may not be an option anyone particularly cares for, but it is an available option.
At first this question sounds silly, why else would someone seek treatment? To get better, of course. My objective however was a little more involved that that. I wanted a treatment plan that had more than one opportunity to stop the cancer. In other words, if the first attempt failed, I had one or more backup options to try again. Remember lesson two? I’m using that same math again.
My doctor and I started discussing options, and the very first one presented to me was one described as “watchful waiting”. The intent of this strategy is to not take any serious action until it is evident that some form of action was necessary. It entailed continued monitoring of PSA levels and an occasional biopsy to track the progression of the disease. Most prostate cancers are very slow growing and this provides an opportunity to delay treatment until the situation is better understood.
As a DP, I am trained to look for biases in data or my clients. I already knew I had a recency bias, meaning I was being influenced by recent events and information. Just the idea of another biopsy turned my blood cold. On top of that, things can get bad quickly when a cancer metastasizes. A cancer doesn’t announce to the world, “Hey I’m going to metastasize tomorrow!” it just does it and you find out after the fact. Prostate cancer tends be be slow, but I was not really willing to bet on that.
The concept of “watchful waiting” is an economic strategy developed to optimize the total cost to treat a population of males with prostate cancer. The definition of total cost includes not only the monetary cost, but the potential negative physical and mental costs associated with less than optimal treatments. The concept is an attempt to bring informed individuality to the treatment strategy rather than simply apply blanket policy.
Just like macroeconomics and economic man, however, this alternative seems to me to be tone deaf to the emotional aspect of decision making for most individuals. Notional data supplied by my doctors suggested that patents typically do not stay on this strategy for long. I have acquaintances that initially chose this option and not a one lasted a full year, citing the constant worry about the cancer as their reason for changing.
Although I carried this option in my decision making process for a while, I knew in my heart and my head immediately that the anxiety over another biopsy and the unknown potential for metastasis would be present every morning when I woke up. I was not content to deal with that stress. I had a family to support and the impact of a daily reminder like that would definitely get in the way of doing that task well. I respect the logic behind this strategy, but it was not for me.
We proceeded to discuss the remaining options which could be grouped into three categories: chemotherapy, surgery, and radiation therapy. We both immediately agreed that chemotherapy was overkill given my situation and should be reserved as a backup option in the event the first alternative was not successful. This fit my overall objective for treatment well. This now left us with surgery and radiation as our primary strategy. Surgery could also serve as a backup to radiation therapy and was deemed to be quite difficult to execute, but was still on the table.
Being a urologist, my doctor had a great deal of information about surgery and helped me understand the risks and advantages very well. It also brought me around to lesson five.
Lesson Five. People advocate for what is familiar to them
Practitioners of any sort are natural advocates for what they can offer simply due to the difference in their knowledge about their own specialty and the specialty of others. Surgeons have a great deal of confidence in their surgical knowledge and skill as do radio-oncologists about radiation therapy and DP’s on decision making for that matter.
I was afforded a number of alternative opinions, and having this awareness helped me tremendously as I met with other doctors. I kept the conversations focused on what they offered and largely avoided discussion of other methods unless it was necessary to understand the differences. I got what I felt was very clear and unambiguous information on all the options available to me.
During those discussions with other doctors however, I ran into lesson six.
Lesson Six. Understand why things are being done
“Mr. Neal, it is kind of hard to call this cancer”.
The established protocols for treating prostate cancer patients assume in the background that the patient is under significant anxiety. Thus, soothing comments and actions are offered to help relieve anxiety if possible. I believe this is a noble effort and don’t want to be critical of it, but it’s not for everyone. For me that last comment did everything but reduce anxiety.
My cancer diagnosis was confirmed by two different doctors, what did this doctor mean by that comment? It made me a bit angry.
As it turns out, the doctor was simply trying to tell me that the cancer was in such an early stage there was little risk of it developing into something more serious. Why the heck didn’t he just say that? While I can’t claim I was free from anxiety, comments like this really threw me for a loop at times and were not helpful to me at all.
Another part of the anxiety management effort entailed removing all data pertaining to my cancer diagnosis from my personal page on my medical provider’s web site. I asked about it and was told that the protocol required that if I wanted to see my data it was deemed best to have it presented to me by a doctor. I could get it any time, I just needed to ask. Again, I don’t want to be critical, but I felt a bit less in control not having direct access to my data on demand although I had that same data handwritten on paper in my desk file.
Now that I better understand the protocol I think I probably would not have been so sensitive had I known it then.
Lesson Seven. You can’t see your own bias coming
After completing all of my referrals, I was now set to make my decision. I had a choice between two forms each of surgery and radiation therapy; all other options had been taken off the table for the primary treatment strategy. I sat down at my desk several times to look at the data and just could not bring myself make the decision.
It was ludicrous to me that a DP couldn’t make the call. Exasperated, I turned to my wife, a cancer survivor, for coaching. We discussed it for quite some time over a glass of wine, then she asked me a simple question. “Are you allowing your work to interfere with your choice?” In a way she was right. I was concerned about my job, but I had already arranged to work from home for the duration of the treatment which could range from a week to three months. No, that wasn’t it, but it set me on a path looking for what it was that was blocking my effort to decide and I found it.
It was my mother.
When I found out I had cancer, I traveled to my home town to tell my parents in person. I just didn’t feel that an email or a phone call would do, they deserved better than that.
Reliving that visit is when I hit on it. That look of pain in my god-like mother’s green eyes was nearly unbearable, it struck me to the core of my heart. I subconsciously realized my health issues were causing her great pain. It was at that moment that reducing the pain I was causing my loved ones became a significant determinant in my decision making process. The problem was, I hadn’t realized it. It slipped right by me in the passion of the moment. I talked this realization over with my wife and parents, and in hindsight, it does seem a little bit silly. As one would expect, their responses were all about taking care of myself and getting well no matter how long that would take.
I immediately went back to work on the decision, and when I accounted for my little epiphany, my consternation was completely understandable. My analysis suggested that a three month course of external beam radiation therapy best met my objective, but with the overriding influence of reducing the pain I was causing others thrown in, an outpatient form of radiation therapy taking a single day kept cropping up. It by far minimized the pain to others by virtue of being a much quicker treatment. It was a mental tug of war that I now understood. After accounting for this concern, I settled immediately on the longer term version of radiation therapy and have never looked back.
Later on, I contacted two trusted colleagues, Eric and Ralph, and discussed my decision to undergo the 3 month course of radiation therapy. They both reinforced my analysis and the resulting decision. The decision was done.
Lesson Seven. Don’t try to be a hero
As a DP, I appreciate very much how emotions impact decision making and watch for them constantly. What I hadn’t appreciated though was how silently they can invade the decision space, even under a watchful eye.
As a person who values self-sufficiency very highly, I delayed asking for support until I had backed myself into a corner and frankly had little choice but to do so. I’ve thought about when one should seek assistance a lot since then. I truly believe that going it alone for a while allowed me to consolidate my thoughts and to fully understand my objectives in my own personal space. I just waited too long after that to ask. When big decisions like this come along, don’t try to be a hero, get some help early.
Lesson Eight. A good decision is not complete without follow through
Now we come back to that door mentioned at the beginning of this essay to wrap things up.
All of my prep visits with the radio-oncologist started in his well-appointed and very comfortable waiting room. Once the sessions were to start however, I was instructed to enter through a private door for patients under treatment. It was sort of a service entrance next to the equipment that support the radiation machines inside. Not quite up to the waiting room standards.
The day of my first treatment, I proceeded to the patients’ door as directed and right in front of my face was a sign. That sign read “Oncology — patients and staff only”. Never before had I directly confronted that word, oncology. All the doors I had entered up until that time merely had a number or the doctor’s name on it.
It hit me in the gut at that moment, I really was a cancer patient, not just a statistic in some report. This was real, this was the true decision, walking through that door. Everything up until now was just preparing for this. I did hesitate for a brief moment but I opened the door and very confidently, I think, walked in.
After walking through that door, I received another large dose of reality. In the waiting room, there were six other patients who had walked through that same door. It never occurred to me that I would even see another patient. Three of the patients were terribly disfigured from surgeries and radiation, but alive. The other three, a man, a woman, and a teenage boy sat quietly in a corner. I learned later that the three in the corner were a family, all with cancer and all being treated. As a comparison to all of that, I had a tumor about the size of a rice grain.
I think about those 6 people often, wondering how things turned out for them and how a DP might help people dealing with medical decisions of that magnitude. My own decision seems very small compared to theirs, but it was an important one for me and a great life lesson, I can’t forget that.
That’s it, the whole story for what it’s worth. Since I left the treatment room for the last time, I have retired, become a grandfather, and by all indications am living a cancer free life as is my wife. I have had the opportunity to help a few other men make their own treatment decisions and those interactions have further reinforced the lessons I’ve laid out in this essay. Interestingly, not one man I have assisted made the same treatment choice I did. One chose the outpatient radiation, and all of the others chose surgery.
I hope by telling my story, it will encourage other DP’s to offer help. I also hope future patients as well as medical professionals know of and seek that help.
Epilogue. A New Source of Information
Since documenting this adventure, a noteworthy new technology has become available for prostate cancer patients that can greatly improve the decision environment.
Using DNA analyses, physicians can now provide the patient with a more definitive assessment of the cancer type including how aggressive that particular cancer may be. As I understand it, this new technology is still developing so is not a perfect indicator, but is available and a great addition to the information base.
Revisiting my story and assuming this information had been available at that time, I think it may have had the potential for changing my decision by adding clarity to the risk I was facing.
Let’s assume for the moment the test had been available and the result was a cancer that took decades to develop, almost benign. It’s quite possible I may have opted for a form of monitoring rather than immediate treatment. Perhaps a hybrid program of monitoring PSA levels along with physical exams, but reserving biopsies for significant changes in the progression. I still have an aversion to the biopsy experience today.
On the other hand, let’s assume the test results indicated a very aggressive cancer type. In that scenario, I believe I would have leaned toward a form of surgery. Surgery in my opinion would enhance the probability of completely excising the tumor cells. I would still have had the backup option of chemotherapy, but would have the added confidence that the affected organ was no longer in my body.
Either way, the same decision making methods I used would still apply.