I recently discovered that an acquaintance “has to have a Whipple procedure”. And I can’t help but think to myself, who says she “has to”? With an average life expectancy of well under a year, I have come to believe this has to be one of the worst statements to hear from a physician: “You have pancreatic cancer”. Most of us know someone who received such a diagnosis, and likely died within a short time. Then there are the unusual cases of “outliving” the prognosis. Maybe a year, or two, or like some of the recipients of the Whipple procedure, perhaps one of the 10- 20% who live to year five. (The American Cancer Society reports for all stages of pancreatic cancer combined, a 20% one-year survival rate and only 4% survival at year 5.)
I don’t want to dash the hope of someone who is grasping onto a life buoy. But, as always, I hope that people get to really make their own informed choice. I can hear the surgeon explain how advanced treatments are now, nearly 80 years after the man whose name, Whipple, created the surgical procedure. The percent of successful surgical outcomes, the details of a hospital length of stay, and percentages of possible complications post-surgery are shared with a prospective surgical candidate. The lifeline is thrown out, and who in their right mind wouldn’t swim towards it?
I can’t help but remember Glen. He was weighing options, and hospice was one of them. He had taken a sabbatical from a local university and was collecting research to make an “informed decision”. He asked me very thoughtful questions about what it meant to be on hospice care, and what my experience had been with people dying from pancreatic cancer. He thanked me, after our tea time, and said he would let me know. Later, he decided to have the Whipple procedure to hopefully arrest his cancer progression and extend his life. He underwent a 6 hour surgery and the removal of his gallbladder, most of his pancreas, a portion of his stomach and a major section of his duodenum, with some odd lymph nodes thrown in.
The five year survival rate for persons with his stage of pancreatic cancer still remains at a grim 5%, and I was saddened that Glen only survived a little over two years. I sat with him again, two months before he died. He told me then, “I wish I hadn’t had the surgery, and had opted for just making the most of my time. It’s been hell since my surgery.” He still managed to eke out good days, and had loving friends and family at his bedside when he died, though he suffered significant pain and maintained to the last moment that he should have made a different decision than to have the surgery.
Another man, Fred, had not been given a choice for surgery. His cancer was far too progressed to be offered the Whipple procedure. He told me when I first introduced him to hospice that he planned to live a lot longer than six months and “look death straight in the eye”. He lived for 13 months after his initial diagnosis, much longer than his doctor had predicted. He, too, suffered pain and disability. I saw him relish his days and never heard him express regret for his lack of surgical treatment.
For every one who receives a cancer diagnosis, their journey begins with that fateful conversation with the physician. The shock and dismay at hearing the “C” word is followed by an avalanche of medical terminology and treatment possibilities that simply boggles the mind. I am thankful that people can do so much research on their own, having internet access to blogs, medical websites, scholarly articles and clinical studies.
But like any conversation about what is possible and having “all the cards laid out”, I hope people hear that a “Whipple” procedure, or any other procedure, may be one option, not THE option. And I hope that truthfulness and kindness are the chief ingredients of all the conversations. And I hope that all the possibilities are weighed, including a choice to not do surgery, radiation or even chemotherapy, and regardless of the choices, to make life count now, to choose the treatments that a person wants to undergo with the knowledge that quantity of days is not necessarily better than quality of days, nor are they mutually exclusive of each other, and fighting or choosing to accept are not polar opposites. To Whipple or not to Whipple, that is not the only question.
hospicediary 