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Looking for advice

7 years 8 months ago #36937 by dukel
Johnv; Knowing all the final decisions are your. I would agree with everything Mike said. Be very vigilant, be as informed as possible. Take advantage of the time you have now to have a plan in place. That is one thing i did not do. When i got to bcg, i thought that would take care of it. Then when it didn,t, i didn't have a plan in place. Read on here about the different options for surgery. Know where you will go if you need surgery, and who you will have perform it. My surgery turned out very well, but i was lucky. Don't have to depend on luck. Here's hoping you don't even need our advice and you stay clear.
Wishing you the best.
Duke

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7 years 8 months ago - 7 years 8 months ago #36922 by johnv

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7 years 8 months ago #36919 by Markq
I had pretty much the same diagnosis of Ta predominately low grade with high grade focal points. The first pathologist favored high grade and the 2nd opinion reading at MSK stated there was a significant low grade component, but enough high grade to render a diagnosis of high grade. I don't know the exact percent of low VS. high grade but the local urologist suggest BCG and my 2nd opinion doctor at MSK agreeded.

I don't know what the right answer is for you, but I'm on BCG and am starting my first maintance round Tuesday. I'm going with the pathology reports and treating it as high grade. The local urologist pretty much left the question of BCG maintance up to me. Since I've got high grade I'm going to try to follow Dr. Lamm's protocol as long as I can. In your case the fact that a major cancer center agreeded with your local doctors treatment plan is a good sign.

47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.

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7 years 8 months ago #36904 by mmc
As Sara Anne already said, it sounds like you did the right thing getting a 2nd opinion and reTURBT.

Based on that, I'd be inclined to go with what they both agreed on. I'd probably be nervous though trying figure out that darn focal high grade business. Mine was high grade from the get go (so I didn't have your dilemma). I empathize with you.

I'd also probably study all I could on potential options if there is a recurrence. Bladder cancer (both high and low grade) has a very high recurrence rate. Figure out what you would do under various scenarios. This removes the fear of the unknown because you will have a plan in place already.
I had bc first in 2006, studied like heck and then forgot about it. When it came back 2 years later, I had my plan, posted lots of follow up questions to people on this site. Saved me two years of fretting about the unknown because I knew what I'd do if it came back.

Show up religiously for all of your follow up cystos and cytologies.

Best of luck!
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 8 months ago #36899 by sara.anne
I am definitely not a pathology expert. But you are truly doing the right thing. A second opinion and a re-TURB are "state of the art" in good patient behavior!!! My gut feeling is that the recommendations sound "right on," and I would want to keep a close watch on it. Will be interesting to see what other information emerges from others.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 years 8 months ago #36895 by johnv
I was diagnosed with a Ta tumor in December. It was removed by TURBT, single tumor, and small. I was given the Mitomycin right after the procedure. I am a non-smoker. The questions I am having center around the pathology report. I was told by my doctor it is 99.9% low grade with a tenth of a percent high grade. The path report states: predominantly low grade with focal high grade. Because of that, my urologist offered me BCG. I asked him what he would do and he said he would wait and not do it now. I went for a second opinion at Mayo. They scoped me again (30 days post op with all clear) They confirmed the diagnosis, however the urologist there said that it was graded high grade, that I was an odd duck with the focal piece. I asked him if I should be on BCG and he said no as well. Both did not seem worried about it. I can't find much information when it comes to focal high grade in a low grade tumor. More specifically, what numbers should I be looking at when it comes to low grade vs. high grade ta tumors and what I have coming at me down the road. Where do I fit in the area of recurrence or progression. Probably an unfair question. I did find one article which said the following:

Although pathologists are generally taught to call
> things the highest grade, in cases like this the high grade area can be
> quite localized. Such a case is most clearly signed out as low-grade (or
> grade 1) TCC with focal high-grade (or grade 3) TCC with a comment as to
> how much high grade there is. There has been some recent literature in
> this regard but there I am not aware of a consensus. I get the feeling
> that these behave closer to low-grade, but I would not attest to it.

Anyone been in my shoes? Should I be concerned. I trust both urologists. The first one trained at Mayo and is conservative and excellent. The second one is excellent as well.

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