How can we learn about our GIST psycho-oncology? We could "Ask the Professionals", and indeed we shall. Hopefully, we have much to learn from mental health providers who have devoted themselves to the clinical, situational and social challenges of working with cancer patients and their families. But where, may we ask, would we find professional psycho-oncologists with extensive GIST experience? How many actual GIST cases could any given mental health professional have worked with actively and intensively during these past few years in which we have known about this relatively uncommon disease.?
Consider also some other aspects of our unique GIST psycho-oncology. Originally, in the face of Gleevec's unexpected blessings out of the blue, and before we knew of its limitations, some early patients on Gleevec went from abject despondency to sheer joy in a matter of weeks. Wondrous as it was, however, the glee of Gleevec came with a catch. Aside from Gleevec's sometimes troublesome, but usually tolerable side effects, GIST patients began to realize that the new wonder drug was not a cure for GIST, but a desperate stop-gap measure and a respite for as long as it worked. And for how long, no one knows. GIST sarcoma patients require long-term follow-ups.
Requisite and regularly repeated imaging studies and laboratory follow-ups are much more than an inconvenient and time-consuming expense. To sentient patients quarterly follow-ups are acute and recurrent reminders that the forthcoming CtScan might indicate that a hopefully indeterminate sentence had been rescinded and terminated without notice. Is that Damocles syndrome too dramatic for you? Deal with it. That too is a big part and prominent feature of our GIST psycho-oncology.
Was it Icarus that flew toward the sun with wax wings of Gleevec only to have them melt and fail? So it must have seemed to some of our dearest and bravest GISTmates who soared for a time on Gleevec's orange wings before it failed them. Grasping for a desperate time in other trial drugs, they faltered and dropped from our ranks. Were you there with them? Who knows our GIST psycho-oncology better than we patients who post and pour out our stories to each other?
