How We Got Here
There is no “Do Over” in Pancreatic Cancer. All families in Alliance of Families Fighting Pancreatic Cancer (AFFPC) know from personal experience why people choose not to pursue treatment for pancreatic cancer:
- Fear that patients will lose their remaining quality of life… but die anyway.
- Confusion that doctors offer so many “options” and “opinions” about the best medical or surgical treatments, but often seem confused when asked what they would advise their own family members in the same situation.
What We Can Do Now
Focus on Quality of Life
Maintaining quality of life is job #1 to patients and families fighting pancreatic cancer. The problem is that surgery still has a significant risk of complications as high as 40% afterward. Currently, there is no way to predict prior to surgery which patients will experience complications after surgery that will permanently impact their quality of life or chances of surviving their cancers.
AFFPC means to change that. Patients need to have a better understanding of how surgery will affect them before they have it. Thankfully, modern computational tools and statistics make it possible to predict the outcome of an operation, so long as there are sufficient patients in the database to validate the risk model. Currently, no single hospital or surgeon performs enough pancreatic surgery to create a predictive model of outcome or quality of life that is sufficiently powerful to base life-and-death decisions upon it.
The AFFPC supports the quality of life project started by a group of like-minded pancreatic surgeons. Minimally-invasive pancreatic surgery has evolved rapidly in the last few years in order to modernize the “Whipple procedure,” which was first performed for pancreatic cancer in 1935. Less invasive and painful approaches to surgery have the potential to improve quality of life after surgery and also reduce the fear that prevents patients from seeking treatment.
The project gathers pancreatic surgeons from hospitals across the US and potentially the world into a data sharing network to link quality of life after surgery to patient characteristics like age, chronic medical conditions, and tumor size and location. This information will empower patients living with pancreatic cancer who must decide whether to undergo surgery without currently having any idea what the likely outcome will be for them.
Personalize Your Medical Decisions
Patients with pancreatic cancer are at an emotional and physical crossroads in their lives and need confidence that the “opinions” and “options” offered to them are actually going to work. They need treatment plans personalized for them and confidence that the risks of the treatment make sense.
Recent studies of pancreatic cancer patients offer simple decision-making tools that reduce the guesswork involved in critical “life and death” decisions. These tools, one example of which is called a Markov model, evaluate a given patient’s age and other medical risks in combination with cancer information such as the tumor’s size and provide predictions of the likely outcomes of surgery as well as a time range for the patient’s expected cancer survival.