When I was diagnosed in 2012, my surgeon never directly told me what stage I was….only that I was eligible for the Whipple. When the head of oncology took over my case, he never mentioned I progressed to stage IV nor did he discuss longevity. Years later I thanked him and the team for never telling me how serious my situation was. At 4.5 years after finishing aggressive chemotherapy of 24 months that included 24 cycles of Folfirinox and 22 cycles of 5-FU/Leucovorin that alternated every six cycles, I got the nerve up to ask what he estimated my lifespan was when he took on my care. He said most with my diagnosis would be 6-8 months but had given me 12 months because I was very physically fit at time of diagnosis and remained so after the Whipple despite the physical challenges. So far he has been off 10 years and I will be celebrating the 11th anniversary of the Whipple procedure on June 18th. I thanked him for never volunteering that prognosis as it would have caused undue anxiety.

Had my oncologist had a pessimistic attitude regarding my treatment, I would not have hesitated to change oncologists and that would likely have resulted in going to another NCI Center of Excellence in Cancer Treatment with a pancreas program. I was already doing a 4’20” commute by train and subway for twice month treatments with Folfirinox so switching to another institution for an experienced oncologist with a better attitude was not an issue. I would go wherever I could get the care I was comfortable with and met my requirements.

Regarding being given an expiration date, that is something that can be difficult to predict with latest advances in chemotherapy and radiotherapy treatments and clinical trials using targeted therapy, immunotherapy as well as small molecule drugs as the third type of trial category. I often refer cancer patients to read a very eloquent essay written in the early 1980’s by Harvard University Computational Biologist Dr. Stephen Jay Gould when he was battling his first cancer. He clearly explains in lay person language about cancer statistics and how they apply to no single patient. The title of the essay is “The Median isn’t the Message” and is an easy read.