One conundrum patients face is the dichotomy of trusting our doctors whilst deep diving in web searches and seeking additional opinions. Another is when our findings and experiences do not align with our doctors or established practices and guidelines.
How would you react in the first consultation with a new patient who presented as I did: with a radiation oncologist in Houston, outcome data on three curative attempts, a graph of self-directed monthly usPSA blood test results (well below established guidelines for recurrence), a recent Ga68 PET CT report (another self-directed effort), and a surprising pathology from an uncommon salvage lymphadenectomy, performed in Belgium over four years ago, following leading edge Ferrotran nanoparticle MRI imaging in the Netherlands?
After the uncomfortable back-and-forth start, I wondered if I would storm out or be asked to leave. Instead, after more than an hour of intense give-and-take, the doctor acknowledged my graph and historical data. He suggested the possibility of recurrence, recommended comparative imaging with the “newer and better” Pylarify PET CT, and asked me to arrange shipment of biopsy slides from the lymphadenectomy in Belgium for a second opinion. I agreed, pleased to have found the doctor I wanted to work with.
A few months later, I was to meet with an internist, as I had been without a primary physician for too long. She is in the same medical group as my new radiation oncologist, and her profile states her focus is on helping patients achieve their health goals. For this consultation, I gave careful thought to how I would present myself.
My primary focus was to discuss the efficacy of the supplements I am taking to (theoretically) combat any remaining prostate cancer, specifically cancer stem cells. I felt COVID vaccinations would come up, so I brought my four self-directed antibody test results, as I remain unvaccinated following my tough week with COVID while on holiday in Cadiz, Spain in February 2020. Our discussions evolved with ease. She did ask me if I was an engineer. The radiation oncologist asked me this as well.
No, I am not an engineer, but, as I write in my book, “As patients, we have a critical role in our health care decisions. With easy access to considerable medical information, we have the opportunity to be patient detectives, patient scientists, and thereby capable self-advocates.”
The experience of a benign prostate biopsy when I was 47 kick-started my efforts as a self-advocate. I delved into possible causes of my elevated PSA, which triggered what is often referred to as an unnecessary biopsy. Quite easily, the culprits were identified. Looking back, I wondered why neither my GP nor the urologist hesitated on the biopsy as I was young, fit, and healthy.
Ten years later, I was working and living in London, England. Following another jump in my PSA, a urologist there, using a more thorough physical exam technique, felt a lesion on my prostate. He recommended an MRI—I was quite surprised. Despite years of fluctuating PSA and discussions of (another possibly unnecessary) biopsy, I had not been advised of imaging for prostate cancer. That MRI, done back home in Austin under the direction of my long-established urologist, clearly showed a tumor. The subsequent biopsy confirmed cancer; cancer that had obviously been missed for several years. My self-advocacy went into alarm.
Despite my urologist’s recommendation for near immediate surgery, I said no, not yet, and returned to London to consider alternative treatments not available in the US. The doctors in London felt the imaging results indicated a more serious cancer than the biopsy findings. My biopsy slides were sent to England for a second opinion, and I had a second MRI done there. Those further investigations and genomic testing (which was not available in the U.S.) indicated a more serious cancer.
After many consultations, I choose robotic prostatectomy for my primary treatment. Unfortunately, the surgery failed to get all the cancer, as did salvage radiation. Between a rock and a hard place, my very strong self-advocacy said no to chemo and ADT. I returned to Europe for the aforementioned Ferrotran nanoparticle MRI and salvage lymphonodectomy. My cancer, confirmed by the second opinion in Houston, had spread to both of my para-aortic lymph nodes. It seems I dodged a crisis.
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.
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