My husband was diagnosed with this type of bladder cancer in 2008. It is a very rare type and does not have the usual symptoms. He had no blood in his urine, but only felt discomfort when he urinated. After being treated for eight weeks with three different antibiotics for a UTI, the Dr finally did a scope and found a growth. The growth was biopsied and diagnosed as Stage IV cancer. He was referred to Dr Kamal Pohar at the James Cancer Hospital in Columbus,OH. He was to have surgery to remove his bladder and have a neobladder constructed. The surgery lasted 14 1/2 hours resulting in both a urostomy and a colostomy because of the extensive spread of the stringy type cancer. He handled the entire situation with dignity and tried to live as normal a life as possible. He underwent six months of Chemotherapy in 2009 and seemed to be doing fine until the fall of 2011 when he began having back pain. After scans, it was determined the cancer had returned. He underwent more Chemo and radiation, but to no avail. He passed in July of 2012. This cancer is very rare, so there are no case studies done on it. My husband's oncologist, Dr Amir Mortazavi, said that he conferred with a Dr at M D Anderson in Houston, TX, about the case soon after his surgery and the Dr there said that my husband would only last three months. We felt blessed that he lived for three and a half years. I guess I wonder why there is not more research done on this type of cancer. Even one person having it should be afforded the same chance of survival.
