Jun 02, 2004 - 6:47 pm
This is my first post on this board.
Last year, I was experiencing some bladder problems, and my urologist, after doing both a PSA and a biopsy, said there was "nothing there" and treated me with Cipro for 10 days. After repeating this twice and not having any results, I went to a different urologist who decided there was something there and did a abdomen and pelvic CT and a bladder biopsy. The diagnosis he gave me (a week before Christmas) was urachal cancer. Because there a question if this was the primary cancer, I was referred for a colonoscopy (done New Years Eve), which was inconclusive as to the primary site. Was it colon invading the bladder, or vice-versa?
As a result of the complexities involved (they estimated 5 to 8 hours for the surgeries), the actual procedures weren't done until February of this year. Rather than urachal or even colon cancer, the surgeon discovered that it was stage III appendiceal with mets. The urologist and colo-rectal surgeons ended up taking my appendix, a good portion of the colon, a part of the bladder and about 8 lymph nodes, leaving me with a colostomy. The rest of the mets had gone into the pelvic sidewall, which is inoperable and not considered to be viable for radiation.
Because this is rather rare (about 1 in 8-10,000 cases from the literature I've seen) the doctors can't really offer much advice other than to treat it as a type of colon cancer and see what might work.
I was finally able to get referred for treatment and had the first IV of Oxaliplatin last Friday. They also have me on 2000 mg Xeloda, twice daily. Aside from a couple of minor side effects, things seem to be going pretty good (in view of the side effects they warned were possible). My CEA is normal and cannot be used as a marker, so the results will probably need to be checked with additional blood tests and/or CT scans to see is this is working or not.
My next appointment with the doctor is the 17th of this month, so hopefully they will be able to have some news for me.