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Not diagnosed, just worried

3 years 9 months ago #50401 by sara.anne
Laura, sounds like you are in good hands, but I know that you wish this was all over!

Often a second TURB is done. The first time the surgeon is working a bit "blind" in that he knows what showed up on earlier exams, but hasn't really been "in there." It has been shown that a second TURB often refines the diagnosis since the surgeon knows where the problem areas are, as shown by the path report. The fact that this was mentioned to you indicates that they know what they are doing.

Will be thinking really good thoughts for you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 9 months ago #50400 by LauraJose
Happy New Year to all.

Just an update, without any resolution yet.

I will have my bladder biopsy next Wednesday, Jan 20, so shortly after that I will know whether I am dealing with bladder cancer or not. It will be a relief to have that answered.

I am also having the Percutaneous Nephrolithonomy (PCNL) with laser lithotripsy (sounds very fancy doesn't it), the same day. This is the surgery to remove a large kidney stone in my left kidney through a hole they cut in my back.

I met with the kidney stone surgeon on Monday, and he seemed very capable. He has done over 2000 of these PCNL procedures, but he is not really a bladder cancer person. He will be doing the biopsy, and assured me that he would be taking the suspicious areas to "clean margins" but he advised that if the pathology report comes back with bladder cancer, that I will be referred to the cancer center doctors for continued treatment and they may want to go back in and take more tissue. I don't know if that is typical, or not, but it seemed like a reasonable approach to me.

So for right now, I am feeling pretty calm. I am hoping that the kidney stone was the source of the blood in my urine and that the "suspicious areas" in my bladder turn out to be just some benign growths of no concern. But if the pathology report determines it is cancer, I will just move forward to deal with the situation.

I have really liked the staff I have dealt with at University of Florida/Shands Hospital. It is really an amazing medical/industrial complex. The scale of their medical services is enormous. From the free valet parking at the main hospital to the shuttle buses that take you from one building to another, they keep the patients moving and in and out of the appointments with great efficiency. Yet the surgeon spent about 45 minutes talking with me and answering my questions. I did not feel rushed at all during our conference. So, so far, so good.

I'll post again after the surgery when I have the path report.

Best of wishes to all of you in 2016.

Laura

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3 years 9 months ago #50234 by jimjeffcoat
If the stone moves into your ureter, you will most likely know it. :(

TURBT w/ Mitomycin 12/14/15 (PUNLMP)

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3 years 9 months ago #50226 by LauraJose
Just sending wishes for a happy holiday for everyone on the forum.

You all have been a big comfort to me as I have started on this path.

I don't know anything more than in my last post, although I did correct that my kidney stone is 2.3 cm by 1.8 cm not mm as I previously posted.
Fortunately, it is still not blocking my ureter, so I don't have any significant pain.

I have my children (age 27 and 30, so not really children anymore) home for the holidays, and all is merry and bright around the house. I have told them about the kidney stone, but not about the biopsy, as I don't want to put a damper on the holiday. If the biopsy ends up with good news, I am not sure if I will mention it, if the biopsy reveals cancer, I will tell them about it at that time. We are a close family, and I know they would support me and their Dad, but they both live out of town and there isn't anything for them to do.

Anyway, I hope each of you have a happy holiday, and a healthy 2016.

Laura

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3 years 10 months ago - 3 years 10 months ago #50101 by Alan
Thanks for the update! At least you are moving forward to a complete diagnosis. Here's hoping your problems were simply caused by that stone!

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 10 months ago #50100 by sara.anne
That is a lot to think about!!! At least you should have some really good answers by the time this is over.

Best of luck to you

Sara Anne

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