Reading and Cancer
“I cannot live without books.”
-Thomas Jefferson
At the age of 46 I was diagnosed with prostate cancer. The urologist recommended surgery and urged me not to delay more than a couple of months. He said surgery would save my life.
Over the following two months his surgical scheduler called three times to try to schedule me for a radical prostatectomy. Each time I declined. Instead of surgery, I read.
Among the books was Dr. Mark Scholz’s Invasion of the Prostate Snatchers. That book convinced me to delay surgery while I did further research.
Each man’s cancer is different. The man in the doctor’s presence does not necessarily need the same treatment as the previous man, nor the next man. As my decade-long cancer battle taught me, doctors prefer to stick with what they did yesterday. It is comfortable. We all seek comfort.
When all one has is a scalpel, the world looks like surgery. He was a surgeon.
Prostate Snatchers taught me to not blindly accept the verdict of the first doctor I met, which for prostate cancer is normally a urologist. After reading the book I proceeded to seek other specialists: namely oncologists, radiologists, and pathologists. Each had different tools and thus saw different solutions.
Ignoring the advice of the first doctor while staring at a cancer diagnosis was no small matter. But I was determined that I would gain understanding before deciding.
The oncologist proposed an attempt to delay cancer progression with a drug cocktail while monitoring the tumors with an observation protocol called “active surveillance.” For me, I decided to go with what might more aptly be called hyperactive surveillance.
Doctor Myers’ idea was that the drugs would delay progression while the hyperactive surveillance would give us sufficient warning otherwise. There was even a chance that the drug cocktail would reduce the lesions. He had seen that happen.
The key word was “hyperactive.” A usual course of active surveillance might involve an MRI every six months or thereabouts. For my hyperactive surveillance I received a blood test every month for 60 months (about 5 years). With each test we had multiple metrics. The oncologist kept records, but I created my own spreadsheet of metrics with time plots showing trends and patterns. It was my cancer growth “smoke detector.”
Also, during that surveillance period, I had many other tests, all meant to develop a comprehensive staging of the disease that was specific to me.
Among the tests were imaging such as MRIs, multi-spectral MRIs, targeted MRIs, a Feraheme MRI, Color-Doppler Ultrasounds, PSMA/CAT scans, and a few needle biopsies of various types. (That last one is a party for which you don’t want an invite.)
Radiation oncologists interpreted the imaging. For analysis of the biopsies, I enlisted three different pathologists’ labs: Johns Hopkins, Duke, and VCU. The world-renowned chief pathologist at Johns Hopkins was wonderfully helpful. He promptly replied to my emails, cared about my plight, and gave direct advice.
The reason I used three labs for the same work was that I wanted to mitigate human error. As it happened, all three interpreted the data the same. That gave me comfort that we had properly staged the disease.
Finally, I had four genetic tests. As with the three pathology labs I had different companies interpret to account for human error. However, genetics testing of prostate cancer was still new circa 2014. Each company gave me slightly different answers. Nevertheless, it was more information I gladly accepted. One test was truly frightening. I write about that in my memoirs.
I complied the various reports, photos, images and spreadsheets into a comprehensive file. That file was emailed to any potential new doctors before I spoke with them. In that way they could be prepared. (At least the ones who bothered to be.) At the meetings I showed up with that same file in a three-ringed binder. The process of organizing helps one to understand. And I was determined to understand. Being organized helps you communicate, and I was determined to have effective communication with those doctors.
After six years on hyperactive surveillance the cancer turned mean. The drugs stopped working but surveillance had done its job. With the smoke detector blaring I choose brachytherapy (“BT”) as my definitive treatment. I was 53.
By then I had read 20 books on prostate cancer. I do not know the count of medical articles and research findings I’d devoured, but it was a lot. That reading led me to the understanding, the meticulous staging, the comprehensive file, the 18 doctor interviews and finally the BT. With 98% effectiveness and the lowest toxicity, it was likely the best option among many.
Fortunately, I had cancer during a time when books and published clinical trials had become easily accessible via the internet. That was a blessing. As of this writing it has been a decade since diagnosis. All the evidence is that the cancer is gone. Those ten years were a hell-soup of stress, but I am as happy as a clam about how well it all turned out. Besides the cancer being gone I learned many lessons to blog about.
But this is supposed to be a blog on leadership. What did my cancer journey have to do with it?
My leadership journey at TEP was 25 years from founding the company to leaving the Board. During that quarter century there were many times when I did not know what to do. That was especially the case during the final five years. Those were the years in which private equity purchased controlling interest. That season was concurrent with my cancer battle.
When I did not know what to do, I read. That was good leadership.
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