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Re:The Subject of CIS

12 years 2 months ago #15305 by mznoregrets
Hi all and Hi Gina,

Just wanted to get my experience in on what I consider a matter of great importance...the value of a "good" specimen and path report.

My uro who did my 1st TUR felt confident he did a good job and the path came back as T2 grade 3. So he felt doing BCG was the way to go. I was strongly encouraged by this board to get a 2nd opinion and I even spoke with the pathologist and learned ALOT. It was ATLEAST a T2 but the pathologist exhausted the specimen - there was not clean margins - cancer was left behind and possibly understaged. THANK GOD I had followed up with the path report and 2nd opinion....my bc was T3 less than 6 weeks later - BCG was not the correct treatment for where I was. In fact, I likely would have lost my fight by now had I not been diligent.

Be sure to get 2nd readings on path reports and 2nd opinions cannot hurt in assuring accurate staging and appropriate treatment. God Bless, Holly

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12 years 2 months ago #15302 by Julie
Patricia, I didn't feel stepped on as I don't have first hand experience as you do. You explained very well why it's important to have a second opinion.

Gina, from what people have reported on the pathology report is there is usually mention that the sample did get enough muscle tissue to determine there was no muscle involvement. I was not referring to the numbers but a description of the tumor and surrounding tissue. That feedback is how the Dr. knows for sure they got it all. It may be accurate that you Dr. did get it all but the pathology report is the report card.

Have you asked your current Dr. what her experience is with Bladder Cancer. Is it one of her specialties? Experience also is what physicians use to evaluate your situation and if they took enough tissue. I am not saying she didn't I'm saying that a verbal statement is insufficient.
Also since CIS is involved BCG is the standard treatment and my take care of any thing left as I don't think they can be sure they got all the CIS if it is disbursed in your bladder. You are hoping that your immune system is stimulated to rid your body of any Bladder Cancer. What everyone is interested in is preventing any spread of the cancer outside your bladder.

We don't mean to add to your anxiety just give you some suggestions about what to ask for and what to be aware of. When we are new to this is seems overwhelming and hopefully this forum will reduce the apprehension. Julie

Volunteer Coordinator
ABLSC

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12 years 2 months ago #15297 by Patricia
Here's an article...tho they just mention men i'm sure they didn't mean to eliminate us females.....http://www.cancerpage.com/news/article.asp?id=9861.....or maybe they did!!

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12 years 2 months ago #15294 by gina
pat....plz..step as you please...i am sure julie doesnt' mind as she is WELCOME to give her thoughts as well!!...and MUCH appreciated to you both...actually your comment about a "good speciman" concerns me...wouldn't a doctor know?..i mean, my uro said without reservation that she'd "gotten it all"!! now, if there is or "could be" a chance that there is residual tumor left behind...wouldn't ALL doctors do a second turb just to be sure?!!...and how is one to know when and "if" a good speciman has been obtained?....not to mention whether or not you were fortunate enough to get a pathologist with the highest expertise?!!! thanks...gina

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12 years 2 months ago #15291 by Patricia
Gina...really path reports depend on the expertise of the pathologist and how much of a specimen your uro got....Yes they can be wrong....but even the experts at this can get it wrong..not as likely..but understaging has been a big problem which is why its always advisable to get a second opinion at a major cancer center or university center that sees a lot of blc. This does not mean yours was not accurately staged...its just prudent to get the second opinion i believe.
My own case in particular was not a good specimen and the uro did not get the margins....my second opinion at a top cancer hospital determined that i needed a second TURB and better specimen.
Honestly this just goes for about anything...i just had a follow-up CT here at a major facility and a new pathologist said i had gallbladder stones......I called up the pathologist who normally reads my scans and had him take another look...it was not stones. I've learned to get second and third opinions...i also sent the scan up to Cleveland for further confirmation.
Sorry Julie..didn't mean to step on your thread...Pat

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12 years 2 months ago #15290 by gina
julie...my path report gave no "numbers..it was short but sweet...your comment "sufficient boarder" concerns me...is the initial path report ever "wrong"?!!

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