Urethral stricture decsion Part 2

Here's the scoop folks. I am currently asymptomatic and hope to remain so until I have the repair of the urethral stricture. I had my retrograde urethrogram yesterday to map out the stricture. Other than a brief burning when when the urologist inflated the balloon in the tip of my penis, the procedure was quite tolerable.
Then my delusional urologist thought he'd do a voiding cystourethrogram. I told him it would never work, but he filled my bladder with dye anyway and then thought I'd lie there on the table and pee out the dye while they took x-rays. So, I tried, but it wans't happening, and finally they let me off the table to empty in the lavatory.
Unfortunately, my urologist will be away for 5 weeks in the summer, and so with my schedule, his schedule, and the hospital schedule, I won't be having the surgery until October.

Geezzzz Warren what a drag for you yo go thru. You beat the cancer eight years ago but still have to deal with the after affects of them takeing itout. You think they would be able to just fix it with nomore problems. But at least no more cancer thats good news.
I read if you mix lemon juice and mineral oil it will help you pass a kidney stone easier. I told a friend who gets them and he tried it and said it works ! He also takes it once in awhile just to lube stuff up. As long as he does this he doesn't get the kidney stones. I hope all goes well with you. Rocky

Well folks, I saw Dr. Armenakas today who agrees that I need a urethral reconstruction; however, he finds my pain course most unusual for a urethral stricture. He has to do a retrograde urethrogram to see the stricture before surgery and says that can't be done while I have all these symptoms. Well, if the stricture is causing all the symptoms, I don't know how it's going to get better without the surgery, but he wants me to take another course of antibiotics and see what happens. If I'm no better within a few days of completing that course of treatment, I'll have to push him for answers and an alternative approach.
Meanwhile, let me say that I had no problems with his office staff, and I thought he was a great guy. He may have been a bit intrigued by my unusual urologic history (testicular atrophy on right since childhood, leydig cell tumor of the left testicle, treatment with mitomycin C instead of BCG, the enormous number of times my stricture has been treated unsuccessfully before coming to him [he basically called dilation barbaric], and the fact that until this current seige I've always had pain without obstructive symptoms).
-Warren

Hi Britt,
I've been reading your posts and wishing I had some useful advice to offer. Clots in the urine can be a sign of bladder cancer. That's why doctors who assume infection and treat without any testing are practicing bad medicine. That's also why I made a point of reassuring everyone reading my post that I had a negative scope 2 months ago. In fact, it was the fact that I passed a clot 8 years ago that saved my life. I knew something was wrong, but my urologist did a urine cytology which didn't show any cancer and so he did nothing. A month later I passed a clot and he did the scope and found the cancer.
Dealing with all your other medical problems will certainly make dealing with bladder cancer one additional burden for you, but it doesn't increase your risk of having a bad outcome. If you have superficial (noninvasive) bladder cancer of any stage, with proper removal, treatment, and surveilance you should do fine and be able to keep your bladder. I had a high grade noninvasive cancer plus CIS and 8 years later I'm here with no recurrences even though I've suffered complications from the treatment.
The most important thing, as so many have told you, is to have an experienced urologist remove the tumors with adequate margins and deep enough into the muscle for proper staging, and then to have the slides reviewed by an equally experienced pathologist because ultimately your recommended treatment will depend on the stage (how deep into the bladder the tumor has invaded) and grade (agressiveness of the cancer) of your tumors.
Good luck. There are many folks on this board with more experience and knowledge than me about bladder cncer, so this is a great place for you to post your questions. I am a pediatrician so I have no experience with bladder cancer other than my own, but as a physician I can cut through the medicalese (incomprehensible doctor speak or mumbo jumbo) so please feel free to send me personal messages (questions) as well as hijack my threads
-Warren

I had a question for you regarding what you had said. I hope Im not hijacking your thread here. if so ill start a new one. When you talked about passing the clost it hit home. Thats how this whole process began for me. I first looded in the toilet and saw these rust colored blobs. I took a vloser look but I didnt know what I was looking at. After that I started using a small plastic pail so I could inspect it without it getting diluted. Again there were abour 4 dark reddish colored amsses about the size of a small pea. AFter that I passed lightly red tinged urine for a day with no clots. By the second ful day all seemed normal. I was thinking maybe it was a kidney stone as I am prone to gour and my uric acid levels run high. About a month later it happened again. This time I could feel the clots pass out(only from the bladder ouward). There was no pain just the feeling of something soft passing thru. This time the red tinge only lasted less that a day. That was my last incident. I was nosey and picked out one of the clots. It was like what you might find with a bloody nose, it didnt fell like anything was solid in the clot. I had mentioned that I had been hospitalized a few times for a bladder infection. After the last clot it was 14 months befroe the scope was done and they found and removed the canceer. One other concern is thatmy kidneys dont function as well as they should. The last time I had the bladder infection was right after my dr made me try endocine again after being pulled off it because it raised my creatin levels past the safe zone. About 5 years ago I was driving in to see my VA prime care. For the past few days I had been extremely sensitive to light It hurt my eyes jst like being snowblind. I was also extremely weak and light headed. Blood work showed my kisneys werent working. They hospitalized me (this is when they pulled me off NSAIDS) AFter 3 days all was well and i went home with no answers but not to take NSAIDS> Does the fact that I have these problems cause a need for even greater concern over this noninvasive surface cancer?
I would appreciate any and all advice or input
britt

I've never had pain that couldn't be managed by advil, although the first time I passed a stone I went into a sweat and had to lie down. My stones have probably not been all that big. The things that bother me most are the bladder and intestinal symptoms that occur as the stone nears the bladder. This time it caught me by surprise with vomiting since I had so many other issues and didn't realize the clots were from a stone passing through.
-Warren
P.S.: for any others out there following this thread, the kidney stone was a small part of the problem, the icing on the cake so to speak. I'm still really curious how non-physicians who couldn't manage their own evaluation think they would have fared with this situation.