My urologist returned in January. He was unaware of what had happened until I spoke to him. His response was that he was not concerned about the stricture. "The important thing was to be sure that there was no cancer." I fully understood his focus on the cancer but was unhappy that that focus appeared to be distracting him from dealing with a problem that made me miserable and which I wanted to be sure would not recur. I answered, "I'm glad you're not worried about the stricture, but I am!" He assured me that he would treat the stricture with laser at the next cystoscopy. A urine cytology in the interim was negative -no malignant or atypical cells.
The cystoscopy was done in March. He told me my bladder looked clean. He took multiple biopsies all of which were negative for cancer. A few days later, I had the pleasure of passing clots from the biopsies… and sometimes a clot didn't want to pass, but eventually things cleared. I attempted to discuss my concerns about everything that happened and all the discussions I had with the covering urologist. My urologist essentially dismissed what the covering urologist told me, and said that the covering urologist had told him that he thought I had fulminant bladder cancer at the time of his cystoscopy. I must say, I was impressed by how available and caring the covering urologist (a man I have also known for many years) was and find it hard to believe he wouldn't share his concerns with me. Now I don't know who to trust.
We scheduled the next cystoscopy in my urologist's office for 3 months, I thought primarily to assess the status of my stricture. That was done Wednesday, June 6. The stricture required dilation which was surprisingly painful in spite of giving the lidocaine gel adequate time to work. There was some redness in the bladder which he wanted to biopsy, but I declined since the one time he did biopsies in his office (after he first got the equipment) it was painful and he didn't get an adequate specimen. If there were a way to anesthetize the inside of the bladder I would have agreed to the biopsies.
After the cystoscopy we discussed his findings, and once again I found him to be operating on a completely different wavelength then I was. The laser didn't work but he didn't think that was important. In his opinion the stricture was never the cause of my problem except to the extent that it contributed to my having a UTI, which he insist was what caused my symptoms in December. He said he could not explain my particular experience with my symptoms, my relief initially after the December cystoscopy, nor the lack of symptomatic improvement on antibiotics. He said the negative culture didn't mean anything because in men the infection gets into the prostate further aggravating the problem. He said there was no need to do anything about the stricture unless I was symptomatic… but I never experienced symptoms specifically referable to a stricture other than a weak stream which I have had forever. And, he said the only reason he had me come back at 3 months was to reassess for cancer, once again referring to the "fulminant bladder cancer" statement. This, in spite of a clean bladder and negative biopsies 3 months earlier. He had no concerns about the stricture. We had a long discussion which I felt went in circles. Only the words "quality of life" could get his focus off cancer long enough to extract a commitment to dealing with my stricture if it caused a problem, but after the experience I had, I'm unclear which symptoms he thinks would warrant dealing with the stricture. There was no significant discussion of options for dealing with the stricture. I just felt like my concerns were completely off his radar. He asked me to come back in 3 months, then when questioned said I could come back in a year since it's been 6½ years since I had cancer, and finally settled on 6 months. I left his office feeling like the month-long ordeal I'd had and the 6 months of anxiety I had about dealing with the stricture and finding a solution all took place somewhere "through the looking glass."
I then started to question the veracity of what I had been told. My faith in my urologist was thoroughly shaken. If the covering urologist feared I had fulminant cancer, was it reasonable not to do biopsies at the time just because of the severe inflammation of the bladder? More to the point, knowing of the positive cytology and the covering urologist's concern, was it reasonable, if my urologist was worried about cancer, to wait 3 months for the follow up cystoscopy?
So here I am. Leaving the man who has taken care of my bladder cancer and walking into the unknown. I made an appointment with a new urologist for July 11. It means driving a greater distance for my care and a different hospital for emergencies. I hope it all works out. BTW, his web site had a link to this forum. That's how I ended up here. I never knew about support groups when I first had my cancer.
To all of you who have just found out you have cancer, there is cancer free life afterwards… but , at least for me, bladder cancer has forever become a part of my life.
[hr] Just a little about me personally. I'll turn 59 on July 1. I have a sweet wife and 3 great kids. No weddings or grandchildren yet. I love computers, play guitar and sing, and I bake the world's best cookies. Yes, I share recipes including a few sugar-free that I perfected for my mother who had diabetes.