Thanks for the response Sara Anne - you raise some good points. Unfortunately, with only 70 published case studies over the last 40+ years, and only about 200 instances of this pathology out of 200,000 bladder tumors, I'm not sure any one place can have what would be considered "experience" with this.
Overall, an RC is the only realistic option and I'm still exploring whether or not the type of tumor (which has been removed) changes the fundamentals of that operation (not sure why it would).
As for where to go, since you have to travel anyway, I would be SURE that the center you choose to be referred to does have expertise in treating sarcoma/carcinosarcoma in the bladder. I would contact the urology departments in each of these and ask that specific question. Others to consider, who do see rare conditions, are MD Anderson and Memorial Sloan Kettering. Just because someplace is well-known, does not mean that it has competence in everything.
Does your urologist have a specific physician he is referring you to? That would indicate that, indeed, he does know someone who is an expert in sarcoma/carcinosarcoma. If it is a general referral to "Mayo Clinic" I would wonder.
Best luck to you
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Just got my pathology report from the TURBT and apparently I have a rare high grade sarcoma/carcinosarcoma.
My surgeon is talking about a referral to the Mayo Clinic and I wondered if any of you have direct experience with either the Arizona clinic or the Minnesota clinic. Anything you wish to share would be great.