4 years 10 months ago - 4 years 10 months ago#47870by CatherineH
You are definitely not out of line to question what is going on. Your pain level is not typical after a TURBT and it sounds like further investigation needs to be done. Perhaps you might consider a second opinion since your issues seem to be ongoing. Not every uro is the right match for each patient. Where are you being treated? Perhaps someone here can suggest a bladder cancer expert in your area.
I'm so sorry you have had these difficulties for over a month. As Sara Anne said, we are not doctors but patients who have been down our own roads with doctors, hospitals, and treatments.
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
No, you don't just "man up and deal with it!" You shouldn't be having such complications from your previous treatment and they shouldn't be considering BCG if there is ANY irritation or possibility of infection being present. CIS is high grade, and BCG is the usual first step in treatment for it, but this should wait until you are no longer symptomatic IMHO (and remember, we are NOT physicians so
we may not understand all the underlying reasons.
What does your urologist say about your issues?
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Let me start off by saying I know I don't have it as bad as most others.
I am 41 years old with a wife and three kids, two girls (11 and 9) and a son (3). I was recently diagnosed with urothelial carcinoma in situ with microinvasion. From what my urologist says, this is TIS, stage 0. If I'm right, that means that this is one of the lowest levels of cancer you can get.
That being said, I have had some painful complications since my biopsy on 11/20 and have visited the emergency room 4 times. I have had to live with three different catheters including a triple lumen, 24 gauge catheter (if you don't know, that's a big SOB). I have also experienced an infection which, I'm sure I don't need to tell you, is not a fun experience. I have not urinated without pain in over a month. I have to urinate hourly which interrupts/limits my sleep, which in turn makes me grumpy and short with my family and friends.
I am constantly told "at least it is low level" or "early stage". This is true, but that doesn't mean that everything is okay.
My treatment, BCG, is scheduled to start on Friday 1/2 and I am worried that I might experience problems with that too.
I'm sorry if this post sounds like I'm whining, but I am hoping that someone here can relate. I've tried to talk to friends and family, but their responses tell me that they don't get it.
Am I out of line here? Should I just "man up" and deal with it?
Thanks in advance for any advise and/or comments.