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34 year old newby in Seattle

10 years 10 months ago #13278 by ale53
Hello all-

Finally heard from my urologist today. He says my tumor was low grade, non-invasive. The other biopsies from my bladder were normal. I asked if he got muscle in the biopsy sample from the original tumor site. He said he did. I need to go back in 3 months for a cystoscopy to check for recurrence. So this sounds like the best news we could have expected.

I also requested a copy of the pathology report for my own records. I'm interested to see all the details.

My TURB was on 1/25/08. After 6 days with no pain, I've had pain during voiding since this past Friday. More specifically pain at the start and at the end but none in the middle. Doesn't seem to be getting worse as the days go on. No blood in my urine. This morning when I woke up I had a massive cramping feeling (like nothing I've felt before, reminded me more of a labor contraction than anything) that stopped when I urinated. Mentioned all this to my doctor who said he'd expect the pain to decrease the further from the surgery I got. Call back if it doesn't go away or gets worse. Anyone had anything like this?

I'll be posting another question about trying to conceive on the Women and Bladder cancer section of the board.


Chris-
Thanks for the offer. If/when I need a second opinion I'll look to UW so I'd be interested to know who you saw there. At this point I don't plan on pursuing a second (unless the pathology report looks fishy) but I feel like even if I don't have a second tumor in the short term, at some point in the next 10 years this will pop back up. Or 40 years from now. No use in speculating though, right?


With thanks,
Lynn

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10 years 10 months ago #13260 by cta7978
Lynn,

Hi fellow Seattlite! If you ever need a second opinion (depending on your grade and stage), I was diagnosed with a T1G3 tumor in 2006 at the age of 35 and have seen several of the urologists at both the UW and Overlake. I had my tumor removed by TURB and went through 6 weeks of BCG treatments at Overlake.

Chris

Chris A.
Diagnosed T1G3 - 3/01/06
37 yo, Seattle, WA

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10 years 10 months ago #13042 by Rosemary
Thanks, Zach!!!! :)
Pat,

Mitomycin is controversial all the way around. My new Uro refuses to use it, but, my first Uro (who is in the same Urology Group) used it on me within one hour after TURB without having prior knowledge of biopsy results

Lots and lots of doctorrs use it after TURBs.

Mitomycin can be lethal IF there is a perforation in the bladder. If there IS a perforation and the Mito is instilled then sepsis can (does?) occur...

I've had two doses immediately after TURBs and no problem....

Buds,
Ro


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

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10 years 10 months ago #13041 by Zachary

Rosemary...link wouldn't let me open the page?....


I fixed the link--try again

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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10 years 10 months ago #13040 by Patricia
Rosemary...link wouldn't let me open the page?....Anyway if a tumor is invasive into the muscle which for some reason my first uro did not know after excising it..the mitomycin would have been a bad idea. I know its controversial...some places will not use it...MSK would not. Pat

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10 years 10 months ago #13027 by Rosemary
Here it is, and it's from Wendy...

" About the mitomycin. Hmm. Two things: The guidelines all say that low risk tumors like yours don't need a 'course', but maybe a one-shot post TUR setting is offered. Riskier tumors are considered for an extended course of Mito, usually 6 rounds, sometimes more or with maintenance.

For the one-shot Mito (or other chemo drug) deal, which is the lastest guidelines from the EUA and AUA, the drug must be instilled with 24 hours, and preferably within 6 hours."


(It's hard for me to read quotes in the little blue boxes....)

Here is the page where this was discussed.....

http://bladdercancersupport.org/smf/index.php?topic=1305.msg11403#msg11403

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

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