I recently wrote about my experience of becoming a patient and how that change in role transformed my perspective as a doctor. But, in that article, I did not share that the reason I had become a patient was that I was undergoing a biopsy for potential prostate cancer.

In preparation for the procedure, the doctor reassured me that the outlook was good and that he did not expect to find anything. He emphasized he was just being cautious. That was very reassuring and reduced my concerns considerably.

But then I read the statement “positive for cancer” in my patient portal. There was a sense of unreality in that moment, and then, an instant later, my world dropped into a whirlwind of fear and uncertainty. The anxiety was like a being outside of myself that held me tight and proceeded to remind me of all the colleagues I had known who had succumbed to cancer. I remembered vividly how some had painfully and slowly wasted away.

The biopsy results were a maze of medical jargon, a language that even I, as a physiatrist, struggled to decipher. I had been given access to them without a doctor first guiding me through this terminology labyrinth. Information is often a good antidote to anxiety, but this can be overwhelming when drinking it through a fire hose.

I first needed to refresh my memory about what a Gleason score was. My cancer had a Gleason score of 6. I did not know at first whether this was good or bad. My mind kept going back to the knowledge that, in other rating systems, Stage IV was very bad. Cancer was seen in three of the thirteen biopsy samples taken. I was not sure what that meant for metastasis, and, regardless of how I tried to focus rationally on facts, my mind kept going to the dark places of worst outcomes.

Fortunately, I had the good fortune to be married to a pathologist. Where my medical specialty failed me, my wife was able to bring me back to the objective fact that a Gleason score of 6 indicated a form of cancer that was likely to be slow-growing and localized. This was comforting.

It was a week before I could speak to my physician, who told me the same thing. Throughout this week of waiting, I had the opportunity to ponder specific questions about medical care from a very personal and impactful perspective. First, why do we give patients access to their test results long before any doctor can explain them?

When I began practicing medicine in the 1990s, online patient portals did not exist. At that time, no one except a treating physician was allowed to interpret or explain results to a patient. This was meant to avoid confusion that could, in the worst-case scenario, lead to harm or a malpractice lawsuit.

In contrast, now I was given access to test results that stated plainly I had cancer, but explained nothing about its severity in terms that any layperson could understand. If I had been any other patient, how many sleepless nights would I have spent wondering how long I had to live before a doctor spoke with me and corrected my expectations?

I’d long been annoyed by patients who told me about their self-diagnoses, made with the aid of “Dr. Google.” Now, for the first time, I understood the appeal of researching my condition independently. This is, in reality, out of necessity.

This need for understanding would only grow as my cancer story progressed. I realized that many patients feel they cannot fully trust doctors and must do research to help them make treatment decisions in which they feel like participants and not just receivers.

When I was finally able to speak with my doctor, he quickly laid out my treatment options: closely monitoring my prostate to see if the cancer cells grew or changed, radiation therapy, or, most radically, surgery. He immediately asked me which course of treatment I preferred.

The problem was that he had not adequately explained the various options’ pros and cons. I wanted to ask what the five-year survival rate was for each, and I wanted to ask what “close monitoring” meant—how often would I need to undergo imaging or biopsies?

But, in the moment with all these options, I found myself tongue-tied. Here I was again in the shoes of a fearful patient, faced with a potentially fatal diagnosis and too intimidated even to articulate my questions.

I suggested a PET scan of my prostate to help us decide my course of treatment. The doctor answered that it wasn’t possible because my PSA scores were too low for a PET scan to be covered by insurance. I had managed to ask a single question, and I was shot down.

Frustrated with insufficient information, I sought an additional expert opinion. Again, my position as a doctor afforded me avenues that were not generally available. A decade ago, I had learned of a local urologist performing surgery with a Da Vinci robot. He must have performed thousands of robotic surgeries by now. I went to him seeking cutting-edge medicine. However, the process of seeking a second opinion was not straightforward either. It required patient navigation of the health care system. I was finally able to reach this doctor and make an appointment. In this case, my experience was different. He asked and shared information the first doctor had not collected or given me. He brought up as a factor in the potential treatment the size of my prostate. I had never been asked that information and didn’t know where to find it. He asked if a DNA analysis of the cancer cells from my biopsy had been performed. The first doctor had not even mentioned this as an option to gather additional perspective on the course of treatment. In his case, he insisted on a PET scan and told me he would make it work with the insurance. To my surprise, he felt he could not make the best decision for my care without it.

The new doctor told me that, overall, the ten-year survival outcomes for prostate cancer were the same when comparing surgery versus surgery. That provided important clarity, and I had the answer to my most pressing question. Inspired by the outcome from this second opinion, I went to see a friend who was an oncologist.

What he had to say floored me. It turned out my first choice of treatment was extremely important as it would set the subsequent choices I would have for follow-up. Undergoing radiation therapy first could make it impossible to undergo the surgical treatment later. Radiation damage to the prostate could make later surgery impossible.

This realization was very puzzling. I was very surprised that I had not been told this aspect of treatment previously. It seemed critical information before deciding on an ultimate alternative. I could have chosen to try less invasive radiation first, not realizing this could prevent me from later choosing the treatment option with the best long-term survival rate or one that I would need.

The apparent disconnect in medical approach from the doctors I consulted was disorienting. I wasn’t sure if the reason was poor communication, inconsistent protocols, or a question of focus. The broader question was whether this was indicative of the American health care system. I had heard friends share that they had been given conflicting treatment plans by different doctors.

I had anchored my professional life on the idea that good medical education would yield excellent patient outcomes. What is happening to our medical system to make the consistency of care attain this state?

When I hear the terms “cancer,” “radiation,” “biopsy,” or “surgery,” I react quite differently than in the past, even physically. It makes me slow down and ask careful questions about what procedures they have undergone, when, and the results.

I have always tried to take thorough histories, but as a physiatrist, cancer treatments are rarely directly medically relevant to what I do. They have become personally relevant. I more fully understand the fundamental change in life outlook caused by a cancer diagnosis. I deeply empathize with the anxiety when my patients talk about their diagnoses. I sincerely hope that this experience will make me a better doctor.

This is true in at least one way. I am passionately careful and engaged in ensuring that my patients understand the benefits and risks of their treatment options. I am even asking them to articulate the pros and cons before accepting their decision on how to proceed.

As far as my diagnosis is concerned, I have decided on a course of action. I am confident about the chosen path because I feel empowered by having the correct information and all the corresponding data needed. My medical training has been essential to processing all this information and, eventually, asking pertinent questions, if perhaps not always the best. But I think of all the patients who do not have a medical background or have just a basic education on which to rely. In addition, I had a network to support me, including a pathologist wife and friends who were doctors. Very few have such a group to support them.

Ultimately, we need to work to develop a health system in this country that is not so reliant on such happenstances. Everyone is entitled to adequate medical care based on correct diagnosis, complete understanding of all aspects of potential treatments and medications, and an openness from the medical community that it may not have all the answers and multiple perspectives might be beneficial. Chosen therapies, procedures, and medications should be adopted, not because they are the most inexpensive, but because they are the ones where robust data and experience support the risk/benefit ratio. This environment will reduce anxiety, fear, and second-guessing in the lives of the patients we serve.

Francisco M. Torres is an interventional physiatrist specializing in diagnosing and treating patients with spine-related pain syndromes. He is certified by the American Board of Physical Medicine and Rehabilitation and the American Board of Pain Medicine and can be reached at Florida Spine Institute and Wellness. 

Dr. Torres was born in Spain and grew up in Puerto Rico. He graduated from the University of Puerto Rico School of Medicine. Dr. Torres performed his physical medicine and rehabilitation residency at the Veterans Administration Hospital in San Juan before completing a musculoskeletal fellowship at Louisiana State University Medical Center in New Orleans. He served three years as a clinical instructor of medicine and assistant professor at LSU before joining Florida Spine Institute in Clearwater, Florida, where he is the medical director of the Wellness Program.

Dr. Torres is an interventional physiatrist specializing in diagnosing and treating patients with spine-related pain syndromes. He is certified by the American Board of Physical Medicine and Rehabilitation and the American Board of Pain Medicine. He is a prolific writer and primarily interested in preventative medicine. He works with all of his patients to promote overall wellness.