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Bladder tumor

3 years 9 months ago #52174 by LillianG
David, I just took a peek at your pathology report. Basically, it's states that the tumor was predominantly low-grade, less than 5% of the cells were high-grade, and the sample included muscularis propria so they could verify that it was non-invasive. I would think that this diagnosis would be considered TaG3 (superficial=Ta and G3=high-grade), but I suggest that you call and ask your doctor to confirm that. I also suggest that you ask your doctor to send the blocks and slides from your two TURBTs to Johns Hopkins for a second opinion. The forms are available online. I filled them out myself, then gave them to my doctor when I asked him to send the samples. Most insurances cover the cost (about $250). And even if your insurance doesn't cover it, I'd suggest you get it done because it's money well spent for your own peace of mind. Also, getting the correct diagnosis up front is imperative.

The second TURBT will be to take another sample from where they removed the tumor to verify that they got it all; then, the BCG treatments will probably start several weeks later, after you've healed from the second TURBT. I've had 12 BCG treatments so far. The treatments are not much fun, but they are very doable.

Take care and keep us posted,
LlillianG

5/2015 4x2cm HG Ta Papillary TCC; 6 initial BCG followed by 3 sets of BCG maintenance. Ten scopes - all NED. Now at scope 1x year.
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3 years 9 months ago - 3 years 9 months ago #52173 by dtat60
Thanks for the reassuring words. It sounds like you (as well as many others) have been through exactly what I have upcoming . In hindsight, anything I can do to prepare for the BCG treatments?

A couple of items that I would like to better understand are the statements -

"Predominately low grade and focally high grade (less than 5%) Urothelial Cancer - No invasive carcinoma identified"

"Sections show urothelial carcinoma with predominately an inverted pattern of growth. There are some papillary contours. For the most part tumor is low grade. However, there are foci with high grade nuclei. In the high grade foci nuclei are markedly enlarged. The degree of high grade dysplasia is less than 5% of the overall tumor. No invasive cancer is seen. There are items of muscularis propria without infiltrate"

Is the 5% number significant? Using the grading system would this be a T1G2 or T1G3?

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG

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3 years 9 months ago - 3 years 9 months ago #52170 by Alan
David,
I wasn't able to open your document but, not to worry. The words non invasive are the key, meaning it hasn't hit the muscle. Taking BCG in all probability means it is high grade hence the BCG that many if not most of us have used. Chances are pretty good that it will kill off any bad stuff or prevent it from coming back. It is all doable. Also, you may remember to where I indicated a second TURB is often done on an initial high grade diagnosis. That is pretty standard protocol. Something that I have gone through as well as most of us. Treatment forever? He was probably talking about regular scope exams-usually a couple of years every 3 months, then every 6 months for another 2 then yearly. My URO with my blessing accelerated me to 6 month scopes after another year, then to yearly after another as my tumor was small, cytology showed no problems and the BCG worked so well reasoning that scopes also present some chance of problems-scarring, UTI's, strictures etc. No fun but, doable. For me I'll take that for peace of mind. I schedule my annual physical (non BC) separate 6 months apart so we can do the non invasive cytology test as a backup. Hopefully, in a few years you will look back and say hey, this wasn't too bad. One day at a time. Keep posting, we are here to listen and someday you will be helping someone else get through this.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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3 years 9 months ago - 3 years 9 months ago #52168 by dtat60

File Attachment:

File Name: Path.doc
File Size:1,160 KB

Well, I got my path report today but it doesn't seem to use the same nomenclature (TNM) that most people have posted. I am attaching the pathology report (with my personal info cut out) and would appreciate it if I could get some feedback from those of you that are familiar with this type of document.

My Doc said that he was scheduling me another TURBT in 6 weeks. After that he said that I would be receiving 6 weeks of BCG treatment and then another round of BCG sometime after that. I asked him about my prognosis. He said the good news is that it is non-invasive and although it will require monitoring and possible treatment forever it in all likelihood would not be fatal. (My words - not his). I was hoping for better news but I guess it could be a lot worse.

Once again I thank you all in advance. After this question is resolved I assume that I will be advancing to the "Non-Invasive" forum threads for additional input/conversation.

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
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3 years 9 months ago #52166 by dtat60
Alan and Sara Anne,

Thanks so much for your feedback. I really appreciate your feedback and knowledge on the topic. No way could this be considered a hijack and I do appreciate y'all taking the time to respond to my questions and concerns. I admittedly feel nervous about today's consultation (hopefully with my path results) but I am much less apprehensive than I was when I first posted after my diagnosis. I know that others have been through the same thing I am going through and although I certainly didn't plan on this being in my retirement plans I am determined to do my best to stay positive and make things as good as possible. Thanks again for your efforts on my behalf, I really am thankful.

Peace

08/16 Blood in Urine;09/16 CT Scan, RPG, Cysto;10/16 TURBT;12/08 BL TURBT;01/17 6X BCG;05/17 NED, 3X BCG, 9/17 NED, 3X BCG,1/18 NED, 3X BCG,7/18 NED, 3X BCG
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3 years 9 months ago - 3 years 9 months ago #52164 by Alan
Sara Anne,

You are welcome as the second opinion also had me searching. In my case my URO was so thorough that I rolled with him and in the end we must "trust" someone. And, as you also said there are times a second is almost mandated.

David, hope I haven't hijacked your thread. Keep us posted as we care about you, and trust we haven't confused the issue.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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