Dear Pat,
Thanks for responding. I have an appointment with a new urologist on July 11. I'm not thinking of it as just another opinion. I feel that I gave my urologist every opportunity to understand my concerns and step up to the plate. We are just so far apart on my management that I don't feel I can continue my care with him... and I feel a real loss about that.
We are, fortunately, not part of the same practice. Mine is a 2 man pediatric practice, more like a Mom & Pop operation, and by personality, that would make me Mom. I remember when I first met my urologist. I was on the pediatric ward discussing a patient. He showed up and started explaining the finer points of some urology issue. He was quite embarrassed when he found out I was a student. Well, I did look like a kid when I was in my 30s.
I didn't become his patient until at least 10 years later. About 14 years ago, when I was 44, I started experiencing intermittent bladder twinges, burning sensations, frequency, vague symptoms. I tested my urine and it was positive for blood. My father had had a bladder polyp (non cancerous) so I went to him and had a cystoscopy which was negative. Over the following 8 years I had various treatments with antibiotics and antispasmodics, none of which made any difference, and a variety of explanations, none of which made any sense to me. The symptoms came and went as they pleased so that I sometimes wondered if it was in my head, but on every occasion that I was symptomatic, the urine tested positive for blood. 10 months before I had the cancer, my urologist removed a Leydig cell tumor from my testicle. I remember that just before Thanksgiving 2000 I asked my urologist, "If I always have symptoms, and I always have blood in my urine, how will I know if there's anything serious?" I'm not sure what inner sensation drove me to question, but he responded that we should do a urine cytology. The cytology showed sheets of atypical cells which he felt was not conclusive, so we did nothing. A few weeks later I passed a clot. If not, my grade 3 cancer would probably have become invasive before it was discovered. My family has been pushing me to find a new urologist for a long time because they feel he missed the diagnosis, and because, based on things I've told them, they find him insensitive to my pain and needs. I've resisted changing because of our personal relationship, and after 6½ years cancer free without a single recurrence, I can't dismiss the possibility that his skills saved my life.
On the matter of cause, I have no doubt that it was a combination of a traumatic catheterization followed by passing the mitomycin C which caused a urethritis, and that recurrent urethritis with subsequent treatments caused my stricture. I haven't been looking for medical information on the forum so much as an opportunity to share experiences. I still hope to hear from others who've had strictures and would hope that my medical credentials would not leave people feeling unqualified to answer me. First, as I said, I'm not looking for medical answers. Second, from the posts I've seen, there are lots of people on the forum who have vastly more knowledge about bladder cancer than I do. Bladder cancer is far afield from pediatrics. And finally, anyone who will SHARE their experience with me will be providing me with something much more valuable than medical information. Clinical information without experience paints a rather flat picture. I'm looking for the multidimensional information this forum can provide.
With regard to the diagnosis of the stricture, you might be mixing ureteral scarring and strictures together with urethral strictures. If you have a urethral stricture, the urologist will see it when he tries to insert the cystoscope. It can't be missed, even if it's not causing any symptoms. Mine has to be dilated before every cystoscopy before the scope can be passed. Unfortunately, my urologist seems to be of the opinion that that is the only reason to be concerned about my stricture. Hydronephrosis and delayed diagnosis would more likely be a result of obstruction of a ureter.
Once again, Pat, thanks for taking the time and caring enough to send a response. I've come late to this forum since I didn't know anything about it when really needed the support 6½ years ago. Even cancer-free, with repeat cystoscopies and complications, bladder cancer never leaves your life. I hope to be a useful member to the forum. New members can take heart in the knowledge that some of us do escape recurrences. While I'm no wizard at bladder cancer, maybe my medical background can be put to some good use.
-Warren
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