At the beginning of February, 2017 Teresa and I made our way to Salt Lake City for the fourth annual meeting of the Cholangiocarcinoma Foundation. (And we combined it with a trip to the Grand Canyon and to see relatives in Phoenix!)
The Foundation is an act of love. It was created by the survivors of a patient who died of cholangiocarcinoma, and a great deal of the organizing of the conference and of the Foundation’s activities seems to be done by those relatives and by other volunteers. It has done something that’s apparently about as rare in medicine as in other fields of human endeavor: it’s brought together people who might otherwise be competing with each other – doctors from different institutions with different perspectives on this disease and its treatment – and people who might otherwise be ignoring each other as much as possible – doctors and their patients – in a truly collegial gathering.
We met some people I’d only seen on the cholangiocarcinoma warriors facebook group – people who’ve had this disease for many years and are still fighting it hard. Several of these people told their stories in short sessions scattered through the conference. They were all the more inspirational because they weren’t simply happy stories. One of the speakers learned after the conference that she must have additional surgery. Another, a woman who seemed particularly well dressed for her presentation, had been in the emergency room just a few weeks before the conference took place.
We also met some scientists, including a very nice group of people from the University of Nebraska with whom we had lunch. They were interested in cell death. So am I, particularly in cancer cell death. It’s often said that cancer cells have escaped the various bodily controls that make ordinary cells die on schedule, but these folks said that cancer cells really want to die – they’re just blocked in various ways from doing so. I hope they’re right and that they can find ways to free cancer cells from their burdensome existence!
And we heard several presentations of pretty hard science. Hard, among other things, in the sense that it wasn’t easy to follow – especially if you, um, dozed off during some of what was said. (But for those of us in that category, the videos of the sessions are in the process of getting posted on the Foundation's page on Facebook.) It was clear that sophisticated work is being done in tracing the pathways of various processes of cell functioning. Pretty much anything that cells do is a potential weapon for cancer cells, but also a potential target for attacking them: how they get nutrition, how they avoid death, how they migrate from place to place in the body. So it was exciting to hear about the work that is underway.
And also a bit chastening, in various ways. There was the scientist who showed pictures of an autopsied liver, and commented that although scans of this patient had shown only discrete tumors, in fact on post-mortem examination it turned out that the whole liver was pervaded by cancer. Perhaps more important, even though there was obviously good work being done by good people, there weren’t a lot of these good people – all of us, patients, caregivers, and scientists, fitted in one mid-size hall – and there seem to be many disparate topics needing examination. The Foundation has generated resources and made grants, and more important sponsored a scientific community, but much more needs to be done.
Still, much is being done. The treatment I’m now getting, which is based partly on an effort to target a new mutation that has appeared in my latest tumor, is the kind of approach that has only emerged in recent years. My oncologist is part of developing this approach – and we talked with her at the conference. And meanwhile the efforts of the volunteers were truly heartwarming.