I hear you, picking a surgeon can be tough because there’s not a lot of information to base your decision on! Really all I ended up have to go on was reputation (online is not very useful, other people is better), experience (mostly as they themselves reported, but some public info), and gut feel after meeting with them.
On the one hand, you shouldn’t go with someone you don’t feel comfortable with; on the other hand, your surgeon’s job isn’t having the best bed-side manners, it’s doing a damn good job cutting that cancer out and putting you back together. The guy I went with definitely did not leave the best first impression by a “normal” standard. He was super late, over 2 hours, and acted somewhat aloof and rushed, though part of that was probably the attitude of “yeah I do this a lot, this is what I’d do.”** He was our last in what was a whirlwind tour of meeting surgeons and oncologists locally and in Boston and NYC, and when my wife and I were in the car headed back I asked who she liked the best overall. “Definitely this guy, despite all that.” I agreed. We got the sense it was a machine there… in a good way! We wanted them to be cranking these cases out, consistently and reliably. (I’m sure the docs at Dana Farber are cranking them out too, but that was just the gut feel part I guess.) BUT, I don’t know the details of the long story you mentioned, and so if you got a bad impression and don’t like him and/or his plan, I agree with hiker, don’t go with him then.
I agree I think there are benefits with going to a major center. The surgeons and their teams are more likely to do these cases very regularly, and they’re more likely to have seen complications and know how to deal with them well. Plus, being plugged into a major center has been a boon for me now that I progressed to stage 4—though hopefully not a bonus you’ll need! One thing I asked the surgeons I met was how many of these they did (and what types etc.). The guy I went with said he did 300(!) of them a year. Most of those were laparoscopic, some robotic. What I was kind of looking for is someone not so young to be inexperienced, but not so old to be out of touch with modern techniques.
Also, I did travel for my surgery—a few hours drive—and while it wasn’t ideal of course, it really wasn’t bad in the grand scheme of things. A home nurse came to help me with the bag, and I got the hang of it pretty quick. I had to drive back for follow ups but we would just make a day trip of it (if we got the chance to have a nice dinner or something we started jokingly calling it a cancer-cation). I did my chemo locally, and they coordinated over blood work and scans etc. so I wasn’t going back for every thing all the time.
That's just my experience, I hope it helps a little to hear it. Good luck with your decision and let us know!
(**To be fair to my surgeon, he was really great in all my subsequent interactions, responsive and caring. His nurses and secretary were really great too, and that makes a big difference. In hindsight I think he probably had some kind of emergency he was dealing with that day we first met. Though he was still often late. Doctors… haha)
DX 6/2017, 37yo father of two
Stage IIIb rectal cancer (T3N1bM0) no genetic indicators, normal CEA
7/2017 radiation + 5FU
10/2017 LAR w/ temp loop ileo. clear margins, 2/33 nodes
11/2017-3/2018 FOLFOX, 9 rounds
2/2018 clear CT
4/2018 ileo reversal
10/2018 CT shows suspicious mass in liver (1.7 cm), and in lung (0.6 cm)
MRI confirms 1 liver met, Stage IV
11/2018 liver resection, clear margins
1/2019 CT: lung node shrank to 0.3 cm