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44 male freaking out - having surgery tomorrow

12 years 10 months ago #1965 by cta7978
The pathology report said that this has a 80% chance of recurrence and a 60% of spreading.  I'm trying to quit smoking, but that hasn't been easy.

That may be a bunch of bullcrap!  Get a second opinion!  Maybe if you had multiple T1G3's and co-contaminent CIS, it might start approaching those statistics, or perhaps those were the natural course statistics (i.e. no further treatment)?

With BCG treatments it should cut your chances of recurrance and progression (spreading) significantly.

I did not have a re-TUR for my T1G3 tumor, and spoke with several urologists (one head of the UWMC urology dept) who agreed that a re-TUR was not necessary.  Alot depends on the skill/competancy of the surgeon.  So don't flip out with all the advice over getting a re-TUR if your doctors are not recommending it.  Both of my Urologists were confident I did not need a Re-TUR, based on the ease of the tumor removal and clear margins.  Also know a re-TUR will also delay your BCG treatments.  I was offered the re-tur though as optional, but declined on their advice. The urologists I spoke to were also not convinced I needed BCG maintenance (I did have the 6 induction treatments) either (which I opted not to have)

But you better quit the smoking now!  Smoking is probably what caused it and the longer you keep pumping the carcinogens into your body, the worse your prognosis. Those carcinogens from your smokes are being filtered out of your bloodstream by your kidneys and dropped right down into your bladder to mess with your bladder lining and cause bladder cancer. I was a can-a-day chewer for 20 years, quit the day I was diagnosed.

I have done a lot of research on T1G3 tumors, so don't be shy if you want some info to read.  I know I was pretty freaked out when I was diagnosed with a T1G3.  I am now 8 months out with no recurrances and about a 30% chance of recurrance/15% chance of overall progression per the EORTC risk tables.  If desired you can read up on my treatment course here;

http://blcforum.com/cgi-bin/forum/YaBB.pl?num=1142294620

EORTC risk tables calculator;

http://www.eortc.be/tools/bladdercalculator/default.htm

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

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12 years 10 months ago #1947 by wendy
Hi Mark,

Glad to see things are moving along. Mike's point about re-TUR is a good one, especially for T1 diagnoses. This is pretty standard procedure these days, to make sure there is no tumor left before starting BCG. You can read about that on this page:
http://blcwebcafe.org/superficialblca.asp on the side bar. This recommendation is part of the European Guidelines, re-TUR for T1 tumors. Lots of reasons to do it. Make sure of what your exact dx is, the stage and grade and if there was and CIS/carcinoma in situ present. CIS makes the game more risky.

I wish you strength with all you have to deal with, I'm glad you have a girlfriend and that she's a non-drinking non-smoker, that's a good one.

Take care, you can survive this.
Wendy

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12 years 10 months ago #1939 by mikmckna
Mark,

Sounds like good news... considering. Sounds like your path was Ta or T1? Anything else such as grade? Usually they use a "T" for stage (how deep is it) and then "G" number for grade (1,2,3). You may consider or discuss a re-staging proceedure. Many Urologists recognize studies that say an inital surgery (TURBT) has a 50% chance of understaging. They go back in several weeks after the initial TURBT and resect the areas done before and look for any signs of missing something. Both my local Uro and my 2nd opinion and John Hopkins stressed the need for a re-staging before treatment.

I hope my passing this on does not freak you out more, but knowledge is power. knowing for SURE the present stage and grade is better than finding out later.

Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06

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12 years 10 months ago #1937 by Mark_from_MN
My surgery went ok. My pathology report said the cancer was past the initial lining but not to the muscle. Next week I have a full physical, bone scan, chest xrays, blood work, etc. to make sure I'm ready for my first BCG treatment which is scheduled for the 16th of November.

The pathology report said that this has a 80% chance of recurrence and a 60% of spreading. I'm trying to quit smoking, but that hasn't been easy.

My girlfriend told my doctor that I've got 3 big things in front of me. I'm now 80+ days sober (alcoholic); I'm trying to quit smoking, and I'm newly diagnosed with Bladder Cancer. PLATE FULL! My girlfriend doesn't drink and doesn't smoke so that helps alot.

I'm nervous about the BCG treatments, but more that the cancer will come back and when it does, it will have spread to the next lining and I'll have to have my bladder removed. Just like AA, one day at a time.

This message board is great. I get to see on a daily basis that there are others just like me going through this too.

Mark From Minneapolis, Minnesota
Born April, 1962
Male/Caucasian
Smoked cigarettes for ~30 years
Newly diagnosed bladder cancer Oct. 2006

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12 years 10 months ago #1859 by Jeannette
hi mark
just wondering how your results turned out,, hopefully good! keep us posted

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12 years 10 months ago #1778 by mikmckna
Mark,
You'll be fine but ask questions. So many Dr's start with their "Papillary fiberous CIS La-coo-Ca-Racha" and all we want to hear is Am I OK? I am 45 been there and then some but knowledge is power. Get copies of your pathology report and any other notes. You'll get good advice and/or confirmation from this site if you have all the good stuff.

Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06

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