This past September, I had the unfortunate and ironic experience of transitioning from conducting research on the American healthcare system to being a patient in the American healthcare system. In September, I was diagnosed with testicular cancer, while working as a research assistant for Professor Einer Elhauge, scouring the Affordable Care Act for regulatory powers with potential for defragmenting our national healthcare system.
Professor Elhauge, recently described fragmentation as a systemic lack of coordination between physicians, as well as between physicians and hospitals. This fragmentation results in increased medical cost and medical errors. My experience as a patient has led me to believe that defragmentation could help reduce other, less quantifiable, emotional and psychological costs to patients. I will attempt to demonstrate this through recounting the first half of my story.[1]
Let me begin with a little more information about myself. I am a third-year law student at Harvard and a Petrie-Flom student fellow. Before cancer, I had the fortune of being in near perfect health. I had never been to an emergency room, broken a bone, or had surgery other than the removal of my wisdom teeth. In fact, not long before my diagnosis I half-jokingly remarked that, upon my 26th birthday in December, I could be one of those people for whom forgoing health insurance was rational. Thankfully, due to the Affordable Care Act, I was still covered under my parents’ health insurance, allowing me to easily seek treatment near home in New Jersey.[2]
I presumably first noticed my tumor during the summer, when I first remember assuring myself that I was being a hypochondriac. The reason I ignored the evidence of my own self-examination, other than it being inconvenient during a busy summer, was that when I found my tumor, it presented not as a lump, but as an increase in firmness that I was convinced my mind invented. It took a return to the normalcy of school for me to really take notice of what was now a perceptibly larger and firmer testicle.[3] I would be remiss if I did not take this opportunity to urge everyone, male and female, to attend yearly physicals and perform regular self-examinations.
The moment I decided to see a doctor, was the first time I ever felt like a patient. I stopped sleeping and did my best to avoid just drifting through classes waiting for doctor appointments. Those first few nights before the primary care appointment, and then again waiting through the weekend before the ultrasound, were the worst. I decided to keep the ordeal to myself until I was sure there was something wrong, as it seemed inconsiderate to worry my loved ones prematurely. There was about one week in between the time I decided to see a physician and receiving the call from her that my ultrasound indicated an unwelcome mass. During that week, I had this constant and distinct awareness of my testicle, a grand sense of insecurity about the future, and of course the internet to keep me company. The internet is a terrible friend to turn to for medical advice.
I assume I am one of the few cancer patients lucky enough to have their psychological and emotional state improve with every new piece of information. Fear of the unknown dissipated in the face of the eminent treatability of testicular cancer, as well as the support of my family and friends. While only about 8000 people a year are diagnosed with testicular cancer in the United States, it is the most common cancer for men my age, and has been successfully treated for decades. Radical inguinal orchiectomy (surgical removal of the testicle) is the primary treatment for nearly all types and stages of testicular cancer. The urologist I visited the day after my ultrasound explained this, and matter-of-factly instructed me to make a surgical appointment with him for the next week. I also spoke with a urologist from closer to home who said she would prefer to conduct the surgery before the end of the week.
That day was Tuesday, the eve of Yom Kippur, and the start of a whirlwind process in which I fasted and attended services, then drove from Cambridge to New Jersey, made many uncomfortable phone calls to my friends,[4] attended a full day of pre-operation appointments, and had my left testicle removed on Friday. I had the friendliest doctors in the world, but even that made no dent on the profound sense of alienation developed as innumerable health care workers poke and prod you. Among the seemingly countless procedures the day before surgery, I gave multiple blood and urine samples, visited a sperm bank,[5] had a chest x-ray, and a CT scan. There inevitably was a lot of waiting and worrying. The urgency of the situation played a role, but the day of pre-operation appointments was filled with surprise forms to fill out and tests to be done that no one warned me about. For example, I was not told that I could not eat for the three hours before my CT scan, so, the day after the Yom Kippur fast, I only ate a banana prior to completing all my appointments in the late afternoon. I then had a few hours to eat before my pre-operation fast began.[6]
It was during the pre-operation day that I first thought how beneficial it could be to have a person hand me a schedule or checklist of everything that must be done, as well as coordinate between providers so that I filled out one form and gave one blood and urine sample. I thankfully have an uncle who is a radiologist and a dear family friend who is an oncologist who both gave expert guidance and advice, but I realized that someone dedicated to managing cases and providing guidance could prove instrumental to those who are less fortunate.
Professor Elhauge’s proposed defragmentation process includes paying for a coordinator or case manager who is incentivized to reduce cost while raising quality of care. I imagine these case managers would become specialists in specific illnesses and procedures as they gained experience (similar to business consultants). They could then act as guides and advisors removing some of the emotional and psychological costs to patients. For example, they could present patients with a checklist of all the pre-operation procedures, so patients could be mentally prepared for their ordeals. They could create one set of forms for all the different providers, as well as decrease the amount of duplicated tests and samples. Assuming proper medical licensing, they could even help contextualize conflicting advice from doctors (which will be the topic of the second half of my story), or at least have literature on best practices and generally accepted statistics. I benefitted from the privilege of knowing the right people, but defragmentation could not only save money and reduce errors, it could improve the patient experience, diminishing the senses of loneliness and alienation. Hopefully, my observations as I coped with this illness can help improve the experiences of future patients.
[1] I must clarify that I received the best possible care that the world has to offer, including the most amazing doctors, the highest rated hospitals, and incredibly caring family and friends some of whom are doctors and offered expert advice in navigating the system, so I believe that these issues are systemic and while I only noticed them, I imagine with worse care and support they would be exacerbated.
[2] Had my tumor grown one year later, I would most likely have been between work and school and possibly, given my history of good health, enrolled in a high-deductible plan.
[3] The answer to a frequently asked question is that there was never any pain.
[4] It seems silly, but one of the hardest things to do was tell my family and friends. No one is ever in the proper mindset to hear the word cancer. I found that sending a text message, asking people to call me at their convenience because I had something important to tell them, worked for me because it limited their shock once on the phone, thereby alleviating some of my stress.
[5] The answer to another frequently asked question is that this was strictly a precautionary measure.
[6] Before my surgery a good friend set up a twitter account for me to update, upon seeing me struggle to keep up with the overwhelming support flowing in from my family and friends. If you are interested in seeing my posts in real time (although I am sure there is little of value), check: https://twitter.com/YoniSchenker and scroll to the bottom.
thanks for your full account and hope you are doing well.
You mentioned nothing about preserving fertility through sperm storage, which I assumed was standard practice with testicular cancer. (Lance Armstrong recounts in the chapter on his cancer in It’s Not About the Bike about the added pressures that brought when he was first diagnosed). Anything you can tell us about how this part of your treatment was handled and was it satisfactory would be of interest. thanks
Thank you for your comment Professor Robertson. As I’m sure you know (but I will explain in case there are those who do not), Lance Armstrong’s cancer was diagnosed after it had already spread to his lungs and brain, requiring a rigorous chemotherapy regime. Chemotherapy can result in sterility, and Armstrong courageously recounted his experience with IVF in his book. Before my surgery, I visited a sperm bank for purely precautionary reasons. Assuming no complications, an orchiectomy poses no risks to ones fertility. The remaining testicle fully compensates for the absence of the removed testicle. My visit was due to the minute chance of complications, and due to the fact that, at the time, I did not yet know whether I would need further treatment. (My decision whether to receive further preventative treatment will be the subject of the second half of my story.)
The interesting and most nerve-racking part of that process was that, unrelated to my surgery and potential treatment, there is a correlation between infertility and developing testicular cancer. This means that upon analysis of my sample, there was a higher than normal risk that I would find out I was already infertile. Thankfully, my analysis was in the normal range. Of course, once there, I had to give blood and urine samples as well as fill out forms including answering what to do with my sample upon my death. All things considered, though, my trip to the sperm bank in between pre-operation check-ups and procedures, went smoothly. I imagine that my experience in this area was significantly less harrowing than that of most young cancer patients, as I encountered it while still feeling healthy and strong. Many patients are sick, weak and already coping with the stresses of facing life-altering treatment and possibilities of death. Under those circumstances, it is probably a severe understatement to say that giving a semen sample must be psychologically difficult. I can not even begin to imagine the difficulty of the experience for women, as removing eggs is significantly more complex and invasive.