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newly diagnosed; where do I go from here?

8 years 10 months ago #34741 by michael305
Joe I hope all goes well. I have a neo bladder and had my prostate removed as well. I am 1 month 1/2 since my surgery and am progressing very well. I return to work soon and also was told no need for chemo so its a born again thing you will be fine.

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8 years 10 months ago - 8 years 10 months ago #34738 by mmc
JJ,

By the way just wanted to tell you how glad i am that you are posting here. Your knowledge is so very helpful. Thank you.


I second that!!! Glad you're posting here!

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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8 years 10 months ago #34737 by jj803
Glad to see that things turned out so favorably for you. I wonder of Dr. Herr's comments don't include restaging turbts as well. Many times the original turbt does not have smooth muscle at all or very little, so under-staging is a real problem, because it doesn't include enough tissue. I think that even re-turbt for staging purposes at the major institutions reveals a significant # of under-staged tumors when a repeat or cystectomy is done. The numbers I have seen range from about 25-50% will be up-staged on a second turbt. This is most often in patients who had little or no muscle wall in the original. I believe that is why many now recommend a routine 2nd turbt for T1 patients who are considering bcg. By the same token, many T2 tumors also turn out to be understaged when cystectomy occurs. Turbt doesn't sample the tissue outside the bladder so pathologically a higher stage cannot really be ruled out by turbt and the scanning studies are not sensitive and specific enough to detect all tumor that extend beyond the bladder wall. Best wishes,

jj

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8 years 10 months ago #34736 by Patricia
Thanks jj..wow it sure makes you think doesn't it? I have an article posted in here under Articles of Interest where Dr. Herr said that 75% of the slides he gets from other institutions or local hospitals are understaged . Thats an alful lot. In my case i had one tiny papillary tumor growing out of CIS and was determined T2. Now at my second TURB at MSK Dr. Herr got it all out of there including margins that were left but said to me (now this was 8 yrs ago) it will be back.
I took my slides with me to USC/Norris, Indiana U, Cleveland Clinic and Mass General (wanted to hear what they had to say) They all recommended cystectomy except Mass General who wanted to do the chemo/radiation which wasn't for me.
My decision on Cleveland was based on the fact that i wanted an Indiana Pouch and MSK did not want to do that...so i was off and running to find an expert who did. As it turned out after the cystectomy my bladder was found to be cancer free with a few dysplasic cells floating around. All nodes clean.
Just interesting.
By the way just wanted to tell you how glad i am that you are posting here. Your knowledge is so very helpful. Thank you.
pat

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8 years 10 months ago #34734 by jj803
Pathology was just a difficult case. There was definitely viable tumor adjacent to bundles of smooth muscle, but probably different pathologists made different interpretations of the muscle. Since smooth muscle can be found in some areas in the lamina propria and makes up the walls of arteries, the decision is based upon the quantity and quality of the smooth muscle. I, too, had a 2nd turbt, but in this specimen there was definitely no muscle wall invasion and there was substantial smooth muscle to evaluate. Yet one month later at rc there was a very small area of invasion into the very superficial aspect of the muscle wall. Given the two events after the initial turbt, I have no idea whether the folks who thought the initial was muscle invasive were correct or if this occurred in the interim. My personal feeling is that the initial turbt was best interpreted as indeterminate but highly suggestive of muscle invasion which was one of the interpretations. I do not believe there was sufficient evidence to deem it muscle invasive, but too much uncertainty to say no invasion. It's just a fluke that I even sought another pathology opinion (other than the ones that are routinely done as a part of a 2nd clinical opinion). I asked one of my partners what he thought about a particular area in terms of CIS and his response was he did not think what I asked about was CIS, but did think it might be muscle invasive. When he showed me what he was talking about, I did not think I could be absolutely sure either way and sent it to Hopkins. Reasons for differences in pathology interpretation are many, but usually occur in difficult cases in terms of interpretation. Then you deal with consulting pathologists who most likely look at the exact same thing and arrive at different conclusions, some are often much more aggressive in what they require in order to call something ca or in this case muscle invasive and others are much less so. It is a difficult line to walk, because, as a pathologist, you want the patient to have the most appropriate treatment without being over treated. In the case of muscle invasion vs not in the urinary bladder, this is a dramatic difference - huge surgery vs conservative treatment. This is one good reason to get a second opinion from someplace that does a lot of bladder ca, since it comes with a pathology opinion from a department that sees a lot of bladder ca. I bet that 95% of the time there is complete agreement, but if you are in that other 5% you then face who to believe and what to act on. For myself, I thought I would not be able to live without significantly second guessing myself, if I didn't act as if it was the worst possible and give myself the best chance for a cure from that worst possible scenario. Hope this helps to explain the dilemma a bit better.

jj

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8 years 10 months ago #34730 by Patricia
jj,
very interesting that 3 top institutions known for bladder cancer could not agree on pathology. Was it the condition of the sample. Just wondering as when i went to MSK for second opinion i was told by Dr. Herr that my slide was not viable and second TURB needed to be done which he scheduled within 3 days. Now that pathology was not even questioned by USC/NOrris or Cleveland Clinic. Just curious.
pat

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