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Just Had Cysto

11 years 10 months ago #3515 by macsen
Thanks everyone for your thoughts but as normal Wendy I will have to wait 4-5 weeks for pathology then the consultant will have his multi disciplinary team meeting so I shold find out what is being recommended next by the end of march. :-X


T1 G2 CIS

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11 years 10 months ago #3514 by lhpdogs
My first follow-up cysto was with a rigid scope... maybe I had enough local anesthetic, cuz it wasn't too bad. What hurt was afterwards, when it wore off - no spasms, just hurt to pee again, maybe from bumping the inside of the bladder with it. My next one is on the 14th - hope I never have those spasms! :-X My doc also said that rigid gave better results...

Lauren

TaG1 12/05
3 recurrences
BCG started 9/09

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11 years 10 months ago #3511 by wendy

Just had a rigid cysto on monday and have had the most pain I've ever had after being doubled up with pain and shaking violently it took an 11/2 hr before they gave me a morphine injection ( nurse said I was having bladder spasm ). On being discharged from hospital the nurse said that there wasn't any reaccurance but they had done biopsies on some red patches seen but nothing to worry about (have I heard that some where before ) I had a course of BCG for CIS ( well I had 3 before they stopped because of heavy bleeding ) its really worried me now that this is CIS again and the Consultant has said that will not attempt BCG again. :'(



T1 G2 CIS


You poor dear! From what I have gathered, rigid cystos are done under general anesthesia because of the discomfort they cause, while flexible scopes are used in out patient settings. But rigid scopes show more than flexible, are much more accurate at detecting cancer.

If you have had CIS, try to get yourself to a place that uses the fluorescent cysto technique. It shows up 30% more CIS than a white light cysto. See this info:
http://blcwebcafe.org/hexvix.asp

This approach makes flexible scopes are as accurate as rigid scopes.

What is lined up in the way of treatment? Have they mentioned cystectomy? When CIS does not respond to BCG something must be done.

Keep in touch,
Wendy

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11 years 10 months ago #3510 by Rosemary
Patricia,

Yes, indeedy, I've had 2 babies, and I can only imagine that if bladder spasms feel anything like the uterus contracting then, ......yikes! :o

I am so glad to know what a bladder spasm is now. I was just guessing before that it was just having to run to the bathroom a lot....like a spastic colon (spastic bladder :D)...

Anyway, I'm in the know now....

Very best regards,
Rosemary




Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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11 years 10 months ago #3509 by Patricia
Rosemary have you ever had a baby?...we generally try to forget those contractions....however, a bladder spasm...thats what it feels like...lots of fun!...I had them after my cystectomy strangly enough but it was due to my bladder filling up to quickly what with an IV in and i didn't recognize that i had to empty my bladder about every 20 minutes...the docs were puzzled...thought i was being overly dramatic until they saw the urine shooting out of my stoma which was not supposed to happen as there is a back up valve........Well surprise!! I worked it out but the doctor definately told me not to drink as much water as the nurses told me to drink. That solved the problem. My pouch still spasms but its just telling me i have to cath...nothing like what i first presented with........Pat

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11 years 10 months ago #3508 by Rosemary
Mac,

This does not sound pleasant at all. Plus, it sounds like you are not very reassured after going through all of that. I hope that you will get your reassurance with the biopsy results.

My doctor always has dispensed meds to me for "bladder spasms", but he never told me what a spasm would be like. Now, I know.

I hope you feel better (all the way around) soon.

With regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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