We often hear from patients and caregivers about how cancer takes from our lives. It certainly does. But I have also been surprised that cancer has given me some gifts. When first diagnosed, I was sent into a tailspin, like most folks. But as I walked out my frustrations, I realized that cancer was giving me the gift of the opportunity to reprioritize my life, if only I would accept it. I have worked hard these past few years to do so. I also have found that the metaphor of being at war with cancer does not work for me. I asked for options for framing in one of the first patient support groups I attended, and as I recall, it was Melinda who said “living with cancer” as a description. And yup, I’m still alive, living with cancer. I’m happy not to be a statistic.

My geological training also helps me live with cancer. In geology, we typically have uncertainty in our decisions. When will an earthquake occur? Is this really the right site to drill? In cholangio, as patients we often encounter uncertainty on the part of medical professionals. I once heard someone say “the body is a pretty weird place.” As patients and caregivers, we must recognize that there are many unknowns, and difficult as it may be, we should try to be comfortable with medical uncertainty.

Multiple doctors looking at patient data remind me of the fable of blind people touching an elephant. Each blind person described something entirely different, depending on what they felt. So too, each doctor looking at a case sees what they know best, which is to be expected. But, as demonstrated by a case study panel at the 2024 Annual Conference, integrating observations from multiple disciplines may lead to better treatment decisions. Unfortunately, my insurance plan does not support such a team-based review. This means that as a patient, I need to be proactive and make sure that multiple perspectives are incorporated in my treatment plans.

In my own journey, this story recently played out. I was considering radiation treatment, but what kind? The first radiologist suggested what they specialized in. A second opinion, obtained only after some persistence with the insurance

company, offered something different. However, neither of these insurance-approved docs were specialists in cholangio. I was even more persistent and got authorized for a third opinion from a cholangio radiation specialist. This third doc gave me very helpful comments about why radiation may not be beneficial for me now and explained why one of the other doc’s suggestions was possibly going to do more harm than good. So please, as patients and caregivers, be persistent. And please, as clinicians, welcome your patients as they pursue multiple opinions and options.

I also would like to encourage patients to contribute wherever and however they can to research efforts. Patient participation in data banks, tissue banks and drug trials not only helps us, but it also helps researchers who are looking for ways to better cope with our cancers.