Thursday, February 7, 2013

Saving on airfare to Houston

Once you’ve been told you have cancer, there is no decision more critical to your survival than where you go for care. Nobody really lives in Lake Wobegone, where all the women are strong, all the men are good looking, and all the oncologists are above average. I’ve been in cancerland long enough to have been mistreated by lazy, disorganized and/or indifferent oncologists. I wouldn’t call my current retinue of doctors quite a dream team, but there is excellence among them. Events of the past few weeks, however, as explained in my previous post, shows how your melanoma care can go off the tracks even when you think you’ve done everything right in how it's provided.

I live in a medium-sized city with a regional cancer center that I would describe as mediocre at best. I speak from the experience of having received care there.  I decided several years ago when my melanoma escalated to stage three that all surgery and immunotherapy would henceforth be conducted by melanoma experts at a major university hospital (OHSU) and large regional hospital system (Providence). There is no substitute for the expertise that comes with doctors who see mostly melanoma patients. I judge the care I’ve received at both locations to have been superior—until now.

The weaknesses of my plan are that 1) I have to travel more than 90 minutes for an appointment or emergency, and 2) my medical oncologist is primarily a medical researcher with poor interpersonal skills working in a system that doesn’t make patient care a priority. He’s also a brilliant scientist doing cutting edge work in immunotherapy, so I haven’t wanted to ditch him. I could go to Houston (home of top-ranked M.D. Anderson Cancer Center) or even Seattle or San Francisco for higher rated melanoma care, but we all have to draw a line at how much we will disrupt our lives in seeking treatment. I’ve lived mostly well since my cancer was diagnosed more than six years ago and am satisfied with the compromises I’ve made that simplify how and where I get care: local cancer center as it can be trusted (as with whole-brain radiation last fall) and Portland superspecialists for the tricky stuff.

Unfortunately, as I was spiraling downward over the last month from the effects of an ipi-induced adrenal disorder, my oncologist in Portland was inexcusably disengaged. He only has one clinic day a week, phone nurses who don't know me from Adam, and a nurse practitioner who is not empowered to respond to patient needs independently. I didn’t need much from him, as adrenal gland insufficiency is a recognized side-effect of ipi. Just a few minutes of focused attention and a short conversation on the phone would have made it clear that I was an obvious candidate for a course of steroids. It’s unfathomable to me that Dr. Curti would miss this easy diagnosis.

So be it. As every melanoma patient soon discovers, shit happens. The medically unexpected must be expected. Our doctors and nurses--even the ones we love--sometimes fail us. That’s why we all eventually take up the mantra of being your own healthcare advocate. You must learn everything you can about your specific condition and engage meaningfully in decisions being made on your behalf. Some cancer centers provide so-called concierge care, which takes much of the stress out of planning your care, but don’t expect Medicare to pick up the tab. If you don’t put in the time and effort to assure that the best possible and appropriate care is provided, and that the system is held responsible for it, you are literally putting your life at risk.

What I’m doing in coming days is to try to find a local oncologist who is competent and will work with my existing cancer team in Portland. That way, I’ll have easier access to someone who can refer me as needed to other local specialists for the simpler stuff, like endocrinology, leaving in place my neurosurgeon, oncologic surgeon, radiation oncologist and medical oncologist (a world-class melanoma expert) in Portland. It’s not a perfect solution, but I’m hoping it works better than what has so recently failed me. And it'll save on airfare to Houston.

1 comment:

Lisa G said...

Peter, just want to let you know that I am happy I have found your blog when doing research about my mother's diagnosis of Stage IV melanoma.
Your recent posts regarding your seizures and ipi is somewhat identical to my mom and colitis due to ipi. She DOES go to MD Anderson but lives 4 hours away. We, too, have decided to have a local oncologist now with consults to Houston. In reality, the whole system is flawed. Too many patients, not easy enough ways to share information/tests/results. It's frustrating.
I was lucky enough to plant an idea in a doctor's head (a hospitalist in Austin where she was hospitalized). I watched him go straight to a computer to search the web, and he learned that ipi was causing an autoimmune colitis and steroids were indeed necessary. It was pulling teeth to get past the NP to have her Houston doctor call him to confirm. Makes me very curious for the patients that don't have advocates.
Best of Luck to both you and my mom. May this horrific disease meet it's cure!