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cystoscopy pain

7 years 5 months ago - 7 years 5 months ago #40488 by mmc
Warren

It is time to get to top bladder cancer specialist. Standard protocol is a follow up Turb and based on your diagnosis you definitely need one. The pathology sounds like he didn't get good enough margins into muscle. You are at least (hope that's it) T1 and there is insufficient data to know f you are T2 until they do the re-TURBT. But you already know that.

Where are you located again?

T1 is tricky. Sometimes cystectomy and sometimes not. There is a rule of thirds with T1 that I have to find the article to re-post or you can search around the forum here to find the link. It was originally posted by KCNorthstar.

T2 is almost always recommended for cystectomy. I'm in my bc surgeon's office right now to discuss my three year all clear after getting my bladder removed. So....even if you do need yours removed there is life after bladder. :)

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 5 months ago - 7 years 5 months ago #40487 by mmc
Warren

It is time to get to top bladder cancer specialist. Standard protocol is a follow up Turb and based on your diagnosis you definitely need one. The pathology sounds like he didn't get good enough margins into muscle. You are at least (hope that's it) T1 and there is insufficient data to know f you are T2 until they do the re-TURBT.

Where are you located again?

T1 is tricky. T2 is almost always recommended for cystectomy. I'm in my bc surgeon's office right now to discuss my three year all clear after getting my bladder removed.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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7 years 5 months ago #40486 by warrentug
Update on my BC....last week I went in and had my TURBT, everything went fine. Today I went back and got my pathology report from the doctors PA.

"Invasive high-grade papillary urothelial carcinoma (TIII of III). Lamina propria invasion present. Muscularis propria not identified. Pathologic TN status: pT1."

The doctor wants me to go back in for another TURBT next month to go deeper and get into the muscle. After that hopefully the pathologist can get a "read" on wether or not it is in the muscle. Again I am all over the internet looking up what this all means...it's hard to get a straight answer from doctors.
I did bring up my pain issue with the scope and the PA did mention using valium the next time I am awake for the scope.

Again any opinions on this DX , and suggestions would be helpful, thanks. Warren.

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7 years 5 months ago #40426 by DougG
When you go back to your uro, tell him again that you need something to take for the scope. Doug takes a valium every time he has a scope.

Anita

Anita
Forum Moderator
Caregiver

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7 years 5 months ago #40425 by Alan
Warren,

You are feeling what I went through 3 1/2 years ago. The soreness will disappear within a day or so. Drink lots of water. I often try to describe the lovely exam as "uncomfortable" for 30 seconds. I realize everyone is diffrent with slightly different issues and pain thresholds. Hoever, I can not imagine taking a tissue sample without beng knocked out. My URO after the CT-scan and following scope he made it very clear that calls for anasthesiology!

On BGG. It can and will become cumulative. Most of us but, not all will have lingering side effects. Mine lasted a day or so from burning to not beng able to hold your urine-which fades after a day or so. I do remeber for that day or so find where the nearest restroom os because once it hits you won't have but maybe 15 seconds to find it! I still find this a small price to pay for putting this disease at bay and definetly better than those that have to endure chemo.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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7 years 5 months ago #40422 by warrentug
Hello everyone, just an update on things. Yesterday I had my TURBT and everything went fine, there's a little pain when I urinate from the tip of my penis but all in all not bad. It feels like there is a cut or something, but considering what it went through I think things turned out o.k. Today already things feel much better.

I did talk to my doctor about the pain during my first cystoscope and he said I just needed to learn to relax my bladder sphincter....I didn't really feel like he was listenning to me and was just giving me a stock answer. Later while I was still out he talked to my "better half" and told her I had an old mans prostate, that he had to twist and turn to get the larger cystoscope into the bladder. Maybe that had something to do with the pain before or maybe he is right and I need to learn to relax....hard to imagine relaxing when that is going on though! :)

Next week I get the pathology results back and find out what treatment plan they think I should do. Thanks again to everyone for the information and ideas.Warren

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