Point taken. But how did the "specialized centers" become so specialized in the first place? Was it because patients had no choice in where they could go to seek treatment and thus the majority of the cases traveled far and wide to go to one center? How do we know that those centers that only treated 5 chordomas could not quickly become experts in their field? To me, again, it's about the big picture. The better trained we are, the better our field, and the better care we can offer patients.
You will never be an "expert" in chordomas, if you treat only 5 of them per year. It's as simple as that. This is nothing strange or unknown in the world of medicine. Look at surgery:
Every surgeon can perform an appendectomy, but there are some very special procedures (for example in neurosurgery or thoracic/heart surgery), which are only performed by few people around the US (or even the world).
It's as simple as that.
If a close friend of yours from Texas developed a chordoma in 8 years from now and asked you, where he should go for treatment, what would you tell him?
1. "Go to the new Texas proton facility around the corner!", knowing, that they usually treat 4-5 cases/year?
2. "Go to Boston!", knowing, that they have treated hundreds of patients there and have generated most of the data, on which treatment of chordomas is based upon.
If my girlfriend developed a chordoma in 8 years from now and we lived in Italy, I would not send her to the new proton facility in Trento (which should be operational by then). I would do my best to get her spot in the PSI (Paul Scherrer Institute), Switzerland.
Currently, I can see wide-spread use of protons only meaningful for children.
Children in most cases have a clear indication for protons and I have referred over 50% of the kids, I've seen, to protons with good results.
The other clear indications are chordomas/chondrosarcomas of the skull base, spine and pelvis. But these tumors are so rare, that you only need a handful of centers to cover the demand. Adenoidcystic carcinomas or some crazy sarcomas of the head/pelvis can also be a good indication, but these tumors are also very rare.
All other proton indications are subject of clinical research. I do believe, that some patients would profit from protons (for example Hodgkins disease or seminoma), but will not refer patients to protons for these indications outside of a clinical trial. Prostate is total no-go in my opinion and waste of resources. Actually is not even a "waste" of resources. It's a
misuse of resources, one that prohibits another patient from getting a treatment, which would make a clinical difference for him.