Topic: If your told your unresctable....
I've never poster before and I have not gone through the formal introduction of myself or my husband David that has cholangiocarcinoma. I'm sitting in the waiting room of New York Presbyterian Hospital as Dr. Kato finishes his ex vivi resection attempt. It can't be done because the cancer has grown into his abdominal wall.
I write this today to simply state that if you or your loved one has been told that they are not resectable in the traditional surgical way please seek out an ex vivo surgeon like Dr. Kato who agreed he could do the surgery but only via ex vivo because it could not be done any other way. Today it could not be done because the cancer advanced more than the diagnostic imaging showed. My husband was diadnosed in September 2011 at The University of Chicago where we had been informed it was not resectable, we then went to Mayo and told the same. We then saw Dr. Brems who attempted a resection and could not do it but did plan on attempting again after chemo and radiation. We did the chemo and radiation. Later he decided against it. We went to Northwestern, Johns Hopkins and then my husband gave up on wanting to seek any other appointments. He agreed to have me send the records to Dr. Kato who's name I obtained from this site from Jim and Kim. It took too long doing it that way even though the result was positive in that he agreed and felt he could do it. We lost valuable time sending records by mail, then waiting for the agreement that he thought he could do the surgery. Then more lost tme for the consult and eventally the wait to get on the surgery schedule.
My advice, don't take no for an answer but once an expperienced center tells you no seek out an ex vivo surgeon.