In Part I, I described my testicular cancer diagnosis and pre-operation experience in an attempt to demonstrate how defragmentation in healthcare could reduce patient emotional and psychological stress. In Part II, I describe my post-surgery experience, consulting specialists with conflicting opinions as to the optimal post-operation treatment regimen.
In various law school courses we discuss a problem sometimes referred to as the “battle of the experts.” In a courtroom, a jury generally hears testimony from experts on both sides of a case, presenting different statistics and opinions for the jury to consider. The jury, comprised of lay people, is likely ill-equipped to contextualize these opinions scientifically, and possibly resorts to heuristics, such as judging the experts’ levels of confidence, demeanors and comprehensibility, when deciding between them. A nuanced testimony delivered by a sweaty expert, when compared to a simple testimony delivered suavely, could be discredited for legally irrelevant reasons.[1] As a patient weighing my post-surgery treatment options, I felt like a lay jury, asked to decide among the opinions of experts, with my own health hanging in the balance.
My surgery, performed Friday after lunch, was a success and I was home before sundown. During the following week, I both received amazing news and was thrust into the most confusing and difficult decision of my life. The CT scan showed no metastasis of the cancer cells to the rest of my body, and only minor vascular invasion, while the pathology report on my removed testicle determined the tumor to be a seminoma, the most treatable form of the disease. My cancer was classified as stage 1B, meaning that no further treatment was necessary. I now had the option to pursue preventative treatment in the form of either radiation or a short dose of chemotherapy, or adopt a program of rigorous observation, including regular CT scans and frequent blood tests. I spoke to a handful of radiation and medical oncologists,[2] and received no unanimous feedback, except that this was my decision to make. The doctors could only describe to me the treatments, and the associated risks and rates of success, as compared with the observation route.
I needed preventative treatment or further observation because a certain percentage of Stage 1 testicular cancer patients develop tumors in their lower abdomen and/or lungs, due to a metastasis too small to be discovered on the initial CT scan. The problem I encountered was that each doctor was equipped with different statistics as to the percentage chance of recurrence, as well as to the mitigating power and risks of the preventative treatments. One doctor informed me that recurrence happened as little as 7% of the time without preventative treatment, but another recited numbers with upper bounds in the twenties. Radiation doctors were more skeptical of the short chemo treatment, which was relatively new (about 5 years old), while one chemo doctor told me it would reduce my chances of recurrence to under 1%. I am still unsure which statistics are more accurate, as I presume there are rival experiments causing the data discrepancies.
My schoolwork in health law, policy, and bioethics imbued me what I imagine to be a different perspective than the average patient. I was skeptical of extra, possibly unnecessary, treatment, yet, after speaking to the first chemo doctor, who happened to be the most enthusiastic about the treatment, I was almost convinced that preventative chemo was the proper path for me. I then spoke with two different radiation doctors,[3] who explained that preventative radiation, in vogue until a few years ago, was no longer advised, as it provided little benefit over only treating those with a recurrence, and exposed the majority of patients to unnecessary radiation and its long term risks. They also expressed skepticism about the new chemotherapy treatment, but were not willing to be definitive because it was not their specialty. I am unsure how one would make a decision strictly between radiation and chemo, as it seemed like specialists were uncomfortable talking about the rival option, but quite confident in their own specialty. Thankfully, my decision was between preventative chemotherapy and observation, and I had the good health, resources, and time, to develop an understanding of the spectrum of opinions and choose one that was sensible for my specific needs.
After talking to those first chemo and radiation doctors, my family friend, mentioned in the previous post, worked some more magic and received responses from two of the world’s leading testicular cancer experts, who said they generally counsel against choosing the preventative treatment. Another relative also spoke to a colleague of his, who recommended taking the preventative treatment. I was left wondering philosophically about my own risk profile, and whether my valuation of quantity versus quality of life was aligned with the values assigned by doctors. Through what lenses were the doctors assessing the tradeoff between the significant potential of recurrence and months of treatment, and a smaller but more life-threatening risk later in life? This decision was not purely medical, yet I was still relying on doctors for the all-important health related information, and I was still uncomfortable with the statistics.
I made an appointment to get a face-to-face explanation from a chemo specialist who believed that preventative chemo was not the correct route. He explained to me that he understood preventative chemo to reduce my chances of recurrence from approximately 20% to 5%. Yet, he felt that the risks outweighed the benefits. Preventative treatment meant exposing 80% of patients, who would have no recurrence regardless of their choice, to unnecessary chemotherapy. The treatment is new, so studies of its long term effects do not extend past five years, but, in general, chemotherapy raises a patient’s risks for secondary cancers that are less treatable, as well as, increases the likelihood of other illnesses later in life, like heart disease. With observation, the other 20% faced treatment of a cancer with as close to a perfect survival rate as possible, so forgoing treatment would not affect my survival chances.[4] This doctor counseled against unnecessarily taking on the secondary risks of preventative treatment, unless I absolutely could not sleep without the assurance of the reduced possibility of recurrence. Many other doctors disagree, but this explanation worked for me. I now visit him every six weeks for a check-up and blood tests, and have a CT scan every three months.
I must pause to reflect on the incredible fortune I had throughout my experience. Sadly, I have multiple friends who have or are suffering through their own bouts with cancer, or the cancer of a loved one. Having my experience grouped with their struggles through hell, under the heading of CANCER, seems disrespectful. In essence, I have survived only the removal of a minor organ (although I jokingly reminded my surgeon that it was major to me). Since then, I have received great news from scans and pathology reports. I faced a tough decision, but was fortunate enough to receive the world’s best advice. I like to think that my decision was based on a sober accounting of the advice accumulated from a wealth of experts. Part of it, though, was undoubtedly based on a greater comfort with this doctor, as well as my predisposition to avoid treatment if possible. Not immersed in the medical literature, I did my best to judge the advice from the different doctors. Using my own heuristic methods, I valued a nuanced and humble willingness to forgo the method at the center of my doctor’s specialty. I do not yet know whether I made the right decision, but can only hope that my decision making process, which included doctors, family, and friends, did not succumb to the flaws exemplified by the battle of the experts.
[1] False equivalence is another aspect of the problem, as experts are given equal treatment, even though one may represent the vast majority of scientific opinion, and the other a small minority. The medical context is not adversarial, so this aspect of the problem is (hopefully) less relevant.
[2] These are two separate specialties. I will refer to medical oncologists as chemo doctors, and radiation oncologists as radiation doctors, to more clearly draw the distinction between those who specialize in radiation and those who specialize in chemo treatments.
[3] I was encouraged to speak to a radiation doctor by the original chemo doctor.
[4] The observation route has its own risks due to the radiation of the CT scans, but I was assured that these are comparatively minor.