This question -- best place for pancreatic cancer care -- is especially acute if you are in an HMO, as I was when diagnosed in 2016. Over 60 million Americans are believed to be in HMO's, and over half the people that are in Medicare Advantage plans. There are significant benefits associated with HMO's (I won't try to list them here), but when you are faced with a life threatening health risk you lament your inability to go "anywhere" for care.

After recovering from the shock of diagnosis, I began to zero in on my options. You can go outside the HMO and pay for care somewhere else. But how much would it cost? You don't know if you can afford it if you don't know how much it would cost. I contacted several prominent hospitals, and not one would give me a price (they are used to billing after the event, and they don't know exactly how much care you might need prior to the surgery).

I grew up in the UK, and began following some patient sites like this one. I read of patients from the UK going to Germany for the surgery when British doctors said they could not operate. One of the preeminent institutions for pancreatic cancer surgery is the University of Heidelberg where they perform over 700 pancreatic surgeries a year, and it is renowned for excellent outcomes. I sent them all my records and I got a price -- about $70,000 in 2016, and they could take me almost immediately.

I was on neoadjuvant chemotherapy and scheduled for radiation before Whipple surgery. Doctors in Germany said "definitely no radiation."

I seriously considered going there. But in the meantime I was "negotiating" with my HMO and researching their capabilities away from my immediate area. I found a surgeon about 500 miles away who performed the Whipple often. He reviewed my records and, interestingly, he also said he could perform the surgery right away without waiting for me to have radiation. I went to him and all went well -- nine years and counting NED.

My oncologist said later if I had delayed the surgery to have the radiation the cancer might well have metastasized.

We're all different, and we have to follow professional advice -- but we can get more than one professional opinion. (I paid for some consultations, but not procedures, outside the HMO.)