When you’re first diagnosed with cancer, no one tells you how much conflicting information and guidance you will encounter and how we, as laypeople, will be put in the uncomfortable position of having to sort through these differences when making treatment decisions. If you’re someone like me—I spent much of my career in data-driven fields where many decisions were black-and-white—this can be especially frustrating and anxiety-inducing.

 

Dan ZellerCourtesy of Dan Zeller

After being diagnosed with prostate cancer in November 2010, I first encountered these conflicts when selecting a surgeon.

 

I did my research. I learned how many surgeries each doctor completed, tried to determine their complication and success rates and even looked for issues with their hospitals. I narrowed my choice to two surgeons, and I thought their approaches would be nearly identical. Far from it.

 

The first surgeon was more aggressive, wanting to remove nerve bundles near the tumor and lymph nodes in the pelvis. The other was more conservative, wanting to leave everything intact. It was left up to me to choose which approach would be most effective. Despite my research, I didn’t feel at all qualified to make that decision. I agonized over it for days.

 

When my prostate-specific antigen (PSA) became detectable again nearly five years after surgery, I faced even more conflicting guidance.

 

PSA is used as a marker to indicate the presence of prostate cancer; historically, a PSA level of 0.2 nanograms/milliliter after a prostatectomy is the threshold used to confirm recurrence and trigger salvage radiation therapy (SRT). However, some researchers have been redefining the threshold. One group reviewed 145 papers on the topic and found 53 different definitions of biochemical recurrence that would be used to start SRT.

 

Some of my doctors embraced the newer recurrence definitions, while others stood by the historical definition. Again, I felt ill-equipped to sort through those 53 different definitions and decide when to start SRT.

 

My SRT recently failed, so I face more diverging guidance from experts in the months ahead.

 

My medical oncologist said she would start hormone therapy when my PSA reached 2.0 ng/mL; my urologist would start it when there were signs of metastases. On top of that, both specialists talked about the choice of mono versus combination therapies administered continuously or intermittently. Again, when the time comes, I’ll be expected to pick which expert’s approach I believe will be most effective.

 

The easy solution would be to forgo any research and just do what the doctor says. But I have found that being an educated, engaged patient has allowed me to have frank discussions with my doctors during which I can call out and better understand the differing approaches to my treatment. It also helped me understand that very little is black-and-white in cancer treatment.

 

The most important thing that I’ve learned throughout this 14-year cancer experience is that you should take the medical professionals’ advice, combine it with the knowledge you’ve acquired through your own research and make treatment decisions based on your goals with the best information you have available at the time. Decide what is right for you, and, once you make that decision, don’t look back. 

 

Dan Zeller has been blogging about his prostate cancer experiences since he was diagnosed in 2010. You can read more of his observations and insights on DansJourney.com.