11 years 7 months ago - 11 years 7 months ago#20104by Rosemary
I can tell that you have been doing your homework.
UTI's, per se, are not a sign of recurrance, however, blood in the Urine is a sign of recurrance. How do you know that what you have is actually a UTI?
Have you had urine cultures done at the Urologists office?
I do not understand the idea of not getting a muscle biopsy with a T1 diagnosis. Are you sure about this?.... Did the Doctor tell you this, or are you determining this by a pathology report? I have concluded by my own path reports that the reading of the muscle pathology is in some sort of secret code, cause you can't prove there is muscle specimen by what I can read. The Top Doctor assured me that he got it!
Until the time you can get a second opinion, become as proactive as possible for your own advocacy without stepping on your Doctors toes (This is sometimes a fine tap dance:P). Ask him if you can have an NMP22 urine cytology test.
Get the culture for UTI, get an NMP22, and if everything is clean, try taking Cranberry pills to clear up the UTI's (you can find AZO at any drug store.)
I wouldn't take cranberry while taking an antibiotic, though.
ASAP, get a second opinion. Isn't there another Doctor at the same clinic that you can use?
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
At this time I cannot get a second opinion as I have an HMO (Kaiser) and cannot go out of the network. This October I am going to change to a PPO which will give me more options. Since I am so new at this I just don't know all the signs to watch out for. I know the tumors can grow quickly so worry about the every 3 month check up. The URO said if I am clear in September he will go to six month cystos. I want to stay on top of things. Is UTI's a sign? I never did have blood in my urine. Only constant UTI's and discomfort. Both my CT scans showed thickening of the bladder wall....URO said this is from the surgery and not to worry. They did not get any muscle tissue in the biopsy with either of the TURB's.
One of our users named Katie is new to the site so I will post this for her while she finds her way around.
After 2 years of constant uti's I asked Dr if I could be referred to URO. Uro dxd last August with PNLMP T1. Small papillary neoplasm which was removed by TURB Oct07. Feb 08 cysto showed it had grown back and Doc fulgurated it without biopsy. April 08 cycto showed large inflammed area...Turb biopsy showed non malignant. Cysto follow-up May 08 nothing found. Now 2 months later I have had 2 UTI's back to back and wondering if I need to call URO, is this a sign I may have something going on? I am so new to this and want to stay proactive.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society