Hi all,

Thanks for the quick replies! It's my own fault for the misleading title (I posted too soon after the phone call and didn't word it well) but I was really hoping for anecdotal personal experiences on surgery vs. chemo and radiation, not whether to get another opinion. From you guys, I was looking for the informal "gotchas" that you rarely hear about from the medical professionals, no matter how many you consult.

I've already read the guidelines and I already know the value of multiple opinions. I went through this with my bone marrow transplant and did get many opinions before I chose Johns Hopkins. One lesson I learned is that each hospital (and each doctor) has its own protocols and they often vary widely. I'm talking about the "top 10" cancer centers here, not random local outfits. Each one believes their way is best based on their own research and experience. The trouble with cancer and associated treatments is that it can vary so much in each individual. There are no easy choices.

The reason I returned to Hopkins is that I have a history there now. All of my records are there from the past three years. My current doctors can more easily confer with my transplant doctor if there are any relevant issues. In addition to my local ENT I've had formal consultations with a variety of doctors at Hopkins, including a visiting RO from another major center, an MO, a surgeon who has expertise with graft vs. host disease in addition to head and neck cancers, and two head and neck surgery oncologists. The robot at Hopkins is in high demand and getting on their schedule in a timely manner required trading slots with another department - changing at this point is not trivial or I wouldn't hesitate to see the doctor at University even though my mind's pretty much made up at this point.

I felt good about the path I've decided on but the doctor on the phone this morning was so anti-surgery, I wondered what I was missing. I described in detail my diagnosis and my history but he still seemed set on the "by the book" protocol for small HPV+ tumors, to the point of seeming close-minded. I asked him what the downside of surgery was and he didn't give any other answer than "data doesn't support that it adds effectiveness" in addition to chemo and radiation, even after I told him that the goal is to avoid chemo and avoid or minimize radiation based on my past medical history. I had the feeling that I wouldn't hear anything different from him if I rearranged my schedule to see him Monday (he had no flexibility on his schedule). There wouldn't be time to get all of my records and slides to him. My diagnosis was not questionable from any of the labs or doctors anyway, only the proposed treatment.

I know I want the tumor removed surgically with TORS, and I don't want to reschedule that procedure. I wasn't so sure about the MRND. As a happy coincidence though, I already had an appointment with my hematologist today, a doctor I've been with for 3 years who I trust 100% and with whom I also have great rapport. He's not a head and neck specialist but as a hematology oncologist, he knows a whole lot about lymph nodes. He also is OPEN to other ideas and wants to hear underlying reasons for opinions, even when he disagrees, before offering his advice, something that seemed lacking in my primary surgeon at Hopkins and the University doctor who called me today. He's affiliated with the smaller local hospitals but the practice he's in partners with University of Maryland for referrals on cases they don't handle. He generally encourages getting multiple opinions and was very supportive through my transplant. We talked at length today - more importantly, he listened to everything I said and also reread all of my reports from the other consultations. In the end he was supportive of the MRND and also with proceeding as soon as possible.

Having said all of that (way too verbosely, no doubt), I'm STILL interested in PERSONAL experiences regarding surgery vs. chemo and radiation, especially any "gotchas" that caused you to have regrets.