Carole Smith

I was 56 years old at diagnosis in 1994. Had actually gone to the urologist to see if I could have a collagen procedure for incontinence. He did lots of tests including an IVP. He said he knew that I had BlCa because I had told him that my bladder "tingled" all the time. He discovered 3 tumors, 2 papillaries (the kind that look like a cluster of grapes) and 1 area of CIS (the "flat" tumor). I had a TURBT to remove that. After another laser surgery, because I still had blood in the urine, I finally started BCG in August. I had a very bad reaction to it. Took me 2 months but I finally got through. I had bad side effects, lost 35 pounds-chronic fatique, very bad cystitus, yeast infections!!, bladder infections, bloody urine, you name it. However, it seems to have done the job on the papillaries, no recurrence of them in 6 years! The Cis has recurred twice. I had Mitomycin C instillations in Feb. of 1999, had 6 of 8 planned treatments because I became allergic to it and became somewhat anemic. I have had 3 clean cystos and been free of cancer for a year now.The MO we have used, is a cysto every 3 months and a biopsy if he saw anything suspicious. I have had around 15 or 16 either TURBTs or YAG Laser biopsies. Have all of the lab reports to prove it and photos of most of them. Many lab reports said "marked atypia" and severe and chronic cystitis. The CIS has been Gr.II/III. Had many cytologies, too.

It has been 6 years and I am still dealing with this "beast". I have accepted the fact that with my stage and grade, it is likely it will come back. We keep a close watch. My bladder is paper thin in the area that has had so much treatment. In May of 1999,a hole was inadvertently punched in the bladder. No fun, peritonitis, etc., but it healed after a week and no surgery was required. In Aug., I had a similar experience-the heat from the Yag Laser caused my intestines to go into ‘panic mode’ again. I was again in the hospital for a couple of days. Antibiotics and rest got me over that. I will go in March for my Next cysto. If he sees anything that would require a biopsy, I may have a decision to make. All of my tumors have been in the same spot in the top of my bladder. We may have to remove the top part because it would be so risky to try to use instruments or laser again. I will cross that bridge when I come to it.

I just want to finish up by saying that bladder cancer is usually an ONGOING deal. I consider myself either in the treatment mode or the normal mode for the rest of my life.

Before I would have a cystectomy or a partial, I would get other opinions.

Update 2 March ’00
After 6 years of going for a scope every 3 months or less, my doctor said on March 2nd that my bladder was battle-scarred and as thin as an onion skin but he saw nothing that needed a closer look at this time, come back in 6 months!! Cytology was also clean.I am loving that Mitomycin C right now!