Getting Started

My sisters Linda and Grace had already been starting to do some initial research. Grace, who lives near my parents in Virginia, had spoken to Dr. Hong who wasn't very helpful - he had referred us to a Dr. at Georgetown to do an EUS/ERCP but the tests weren't scheduled till Nov. 22. We looked around and found a lot of information on the web. By far the best resource we found was the Johns Hopkins pancreatic cancer discussion board. There is no better resource than other people who are going through or have gone through this ordeal.

We learned that Johns Hopkins was one of the best places for Pancreatic Cancer which was great because it was located fairly near to my parents. We also saw that surgery was the best hope for treating this disease although only 10-20% of diagnosed patients are eligible for surgery (mostly because of spread or artery/vein involvement). So we began by trying to call the surgeons at Johns Hopkins directly to ask for some advice about how to proceed. I wanted to make sure we had all the right tests lined up to give the surgeons the information they would need to determine if our mother was a candidate for resection. I found it fairly difficult to work directly with the surgery department as a new patient. I heard a lot of conflicting advice from the assistants/nurses. One person said that we may not even need an EUS/ERCP and that the CT may be enough to determine resectability. Another said that we should proceed with the Georgetown tests and only call back after we had the results. I had asked if we could do the tests at Hopkins since I wanted to get in the "system" quickly and she had said that was not possible (this was not true at all). We felt a bit frustrated at this point with the conflicting info and lack of urgency.

So on Monday, Nov. 14 we started driving around to pick up all my mother's records. We picked up a copy of her CT scans and then stopped by Dr. Hong's office to pick up his records. Dr. Hong is a very strange man - we were not with my mother and I think he may have thought we were lawyers because he acted really spooked and was hesitant to give us her records even though I had a note. He wouldn't say anything for many minutes and just stood there - ultimately we got what we needed and drove over to Johns Hopkins. We figured in person was the best way to go. We had asked Dr. Hong if he would do a referral to Dr. Cameron and all he was only willing to write a short note for us.

We had spoken to some Dr. friends and one of them had mentioned Dr. Canto at Hopkins as being a very good gastroenterologist for pancreatic cancer. So we decided to try and find a surgeon to look at our mother's CT scan but also drop off information with Dr. Canto. We got to Hopkins and went to Blalock and walked around the floor where the surgeon's offices were. We ran into an administrator who was really helpful and referred us to one of the surgeons. We had wanted to maybe see Dr. Cameron, but we were introduced to the assistant of another surgeon there. She mentioned that if we went with the other surgeon we couldn't switch later on. So we had to decide if we wanted to try and pursue Dr. Cameron through some other route (he requires a physician referral) or go with this surgeon. We had lunch and called a few people and decided that it would be OK to go with the other surgeon. We left the films with the assistant and then proceeded to the gastro department to leave the records for Dr. Canto. The surgeon's assistant mentioned we would hear the surgeon's initial thoughts on resectability in a couple of days.

Dr. Canto's nurse called us to schedule a 3D CT (pancreatic protocol) and an EUS on Friday the 18th. She mentioned the surgeons would need this data no matter what. We felt somewhat relieved because we were officially in the system at Johns Hopkins and things were finally moving along. We never heard from the surgeon. In retrospect, this all worked out fine and it seems like going through Dr. Canto was the best route to go.