I first posted the middle of January, a couple of weeks before my surgery on 1-24-07. My tumor was a leiomysarcoma and I was told there was no chance of saving my bladder. I knew the tumor was rare and also read in the long-term, the outcome of having this type of tumor was usually not successful. If you read about leiomysarcoma on this site, you'll see it occurs in .05% of all bladder cancers.
I'll try to make this story a little shorter and give you the highlights. The tumor was not as large as they saw on the CAT scan, as it had a large amount of inflamed tissue surrounding the very small malignacy. Four lymph nodes were removed, all were negative, as well as several other tissue samples around the area of my bladder. My right ovary was removed (I didn't need it anyway) along with my appendix...all negative for cancer cells. All the inflamed tissue surrounding the tumor was removed and also tested negative for cancer cells. While in surgery, the doctor talked to my husband and told him things were not as bad as they had expected. The surgeon at the Cleveland Clinic and my husband decided we should try a partial cystecomy. (I knew this was a long-shot before the surgery, but my husband and I talked about the possibility and what we should do if given the option) Since there were no malignant cells, other than the tumor itself, about 1/3 of my bladder was removed; also, the tumor was around a ureter, so that had to be removed and re-implanted.
My biggest complaint was the foley catheter I had to live with for two weeks after surgery. I had bladder spasms like crazy. No amount of pain medication helped those suckers and I was having them about every twenty minutes. I told my husband they were like labor pains without anything good happening after the pain was over, except to expect another one.
I am so thankful that none of the post-op expectations occured. The surgery was about seven and a half hrs. long. I went from a couple of hrs. in post-op observation to a regular room. I required no blood transfusions, no ICU and my hospital stay was only five nights. I am most thankful to one of the posters on this forum who told me to take plenty of pillows for the car ride home. (four hrs.) I padded myself in the backseat and was relatively comfortable.
I was back at work part-time, three weeks post-op. After the foley was removed, my healing was remarkable.
I'm not saying this thing was a big picnic, it was no fun at all. I'm just happy things were not as bad as they looked on the CAT scan.
I'll have CAT scans every three months for the first year. I had my first one two days ago and have not received the report yet. I have a little more anxiety than I expected...waiting is not easy.
My expecience at the Cleveland Clinic was very positive....if one can say anything is positive about having a partial cystecomy. I was given wonderful care and place runs like a well oiled machine! (BTW-I still have my tatoo to remind me of what could have been and of course the long scar on my abdomen...that's a small price to pay in my case.)
If you have been newly diagnosed, you need to be active in the decisions that are made concerning your condition. Talk things over with your loved ones before surgery in case an option like mine is given to you. My local urologist suggested I get a second opinion and went as far as getting the appointment for me at the Cleveland Clinic. (wonderful man that he is) A second opinion is a 'no brainer' with bladder cancer as far as I'm concerned. I was in Cleveland within two weeks of my diagnosis with the leiomyosarcoma. And, not all bladder cancers start with blood in the urine....I had none. I presented with pain because of the location of the tumor being on a ureter and it had invaded the bladder wall. (not a good thing)
Well, that's my story so far. One of the questions I had on my first post was, will I ever feel normal again. My answer: Absolutely, 100%.
GG
