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9 years 10 months ago #24034 by Stephany
And Bobby, keep in mind that the guy gave you this info, over the phone, with no qualms. I think you would be much more comfortable with someone who is able to sit down across from you, and look you in the eye, and answer your questions.

And I'll bet you'll have a lot by then! Keep on questioning until you have answers. And keep coming back here and let us know what you are finding out.

Stephany in Iowa

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9 years 10 months ago #24027 by mmc
Quiltingnanny,

Yes, we are also glad you found the site. I can't tell you how much of a help it has been for me personally. I hope you find the same value. Keep coming back, feel free to ask absolutely anything. We've all had lots of questions, done lots of research, had lots of experiences, and we're happy to share.

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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9 years 10 months ago #24025 by Quiltingnanny
Well I thank you all for your input. Perhaps it is time for me to go back to the VA since they have an affiliation with Emory. I think tommrow I will try to get hold of the urology PA I used to see at the VA and see if there is a chance I can get in - at least for a second opinion. I am so glad I found this site - last night I read a lot here and since it was all in plain English I did not have any problem understanding. Thanks again, Bobbie

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9 years 10 months ago #24021 by mmc
You definately NEED to know if it is truly superficial or if it has penetrated the lining of the bladder into the muscle wall. The treatments are very different.

Additionally, I would follow up with your uro and question him about why he considers it superficial if muscle involvement isn't ruled out.

Finally, I would suggest a second opinion on the treatment given what is currently known and not known.

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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9 years 10 months ago #24007 by Patricia
I agree with wsilberstein....BCG would be a disaster if any muscle was involved. I would definately seek a second opinion at this point. Request the slides and take them elsewhere. Georgia is tough..no major cancer centers yet with NCI but Emory working on it. Here's a link to someone who might be a good second opinion...did his fellowship at UCSF which is quite good.
http://www.emoryhealthcare.org/find_physician/physician_detail1.jsp?physicianid=11146&sessionid=14580516&search=Search%20by%20Area%20of%20Clinical%20Interest
Thats just a too iffy pathology report.
Pat

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9 years 10 months ago #24004 by wsilberstein
Because the interpretation says, "Muscularis Propria is identified, Definitive involvement cannot be determined," you should have the slides reviewed by an independent pathologist who has experience with bladder cancer. Unless they can state that the muscularis has not been invaded, your doctor cannot call your cancer superficial, and that makes all the difference in terms of treatment. If review of the biopsies is not definitive, get a reTURB from another urologist who is epxerienced with bladder cancer for a second opinion.
Ny urologist also acted like my cancer was no big deal. A more educated, detailed discussion would have been more reassuring; however, 8 years later, even though it was high grade, I guess he was right since I'm fine, but... mine was unquestionably non-invasive, and I still had the slides reviewed elsewhere. The issue of msucularis invasion must be clearly determined.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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