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Questions after TURBT.

8 months 3 weeks ago #56956 by Sirael2003
Thank you Jacko. My Urologist is the best in my state, but doesn’t understand that I want to know everything that is or could be the cause of my symptoms. Trust me is never good enough for me.
I have 2 fairly young children who are old enough to know that cancer isn’t something you want. Right now I am lying to them every day until I know what is going on. Lying to my children isn’t something I aspire to do. I just want some answers!

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8 months 3 weeks ago #56955 by Jacko
Sirael2003

I had my first TURB 18 June 2018 after one heavy episode of bleeding with follow up urine samples showing cancer. It was a shock to hear that I had one Carcinoma Insitu tumour. The Uro also took biopsies from all around my bladder and reported that there were cancer cells everywhere.....but only one tumour which he dealt with. So its appears to be not unusual to go looking for other signs of cancer by taking biopsies from other areas of the bladder. His actual words were 'I have never seen a bladder like yours before' relating to the multiple positive biopsies for cancer he found during the first TURB. As it was a high grade cancer he followed up with a second TURB six weeks after the first, as is normal practice, so as to check on any regrowth/rate of regrowth etc. I was a line ball case of BCG or bladder removal. The consensus was give BCG a go and so we did. After 6 sessions a further inspection revealed no malignant cells. I am now onto 3 maintenance sessions.

Uros can be somewhat perfunctory in their dealings with us which leads to some angst. We persisted in asking questions and he got the fact that he needed to go further than just 'trust me'. That was a turning point and since then and by filling in the ever decreasing blanks with forums like this I feel I know where I'm going and to a certain extent, using the forum, who is going with me.

Keep your chin up.

Jacko

CIS diagnosed May 18
2 TURBS
6 BCGs 2018
3 Maintenance BCGs 2019

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8 months 3 weeks ago #56953 by Sirael2003
I haven’t gotten the news on the biopsies yet. The cytology was on my urine. I have my follow up next Monday.

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8 months 3 weeks ago #56952 by Alan
All good news you got. Visible blood often looks like a lot when in reality it isn't much. As Sara Anne said many times no cause for bleeding is found however in this case those stones almost have to be it. Also, as she said a follow up in a few months would be prudent just for peace of mind.

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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8 months 3 weeks ago #56951 by sara.anne
First, I would suggest that this is very good news. The urologist found nothing on the TURB. During this procedure he no doubt took samples all around the bladder and nothing turned up. The cytology tests only showed some abnormal cells. That can happen for no reason at all....these tests are notorious for giving "false positives" or showing a problem when there really is none. They are just an indication that perhaps it would be a good idea to take a closer look, which is what your doctor did with the TURB.

And yes, small kidney stones can cause bleeding. Many patients never find out a reason for blood in the urine.

I hope the doctor suggested that he see you again in a few months just to check?

GREAT NEWS

Sara Anne

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

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8 months 3 weeks ago #56950 by Sirael2003
I had my TURBT on Friday and feel like I’m in the dark. I’ve had visible Hematuria and cytology that was consistent with Urothelial Neoplasm. Doctor tells me upon waking that he pulled 2 tiny stones from my left kidney that I have known about for several years. I was told they weren’t going anywhere. He says he thinks they were causing the bleeding. How can tiny stones that aren’t moving cause heavy blood, and pain in the low abdomen and groin?

Doctor tells me he didn’t see any tumors and took biopsies. My question is if you don’t see anything how do you know what to biopsy?
The nurse called me today to check in on me. I asked her the same question. She said oh he probably did see something but it wasn’t suspicious looking! What in the world? I feel like I’m not being told the truth and would love some insight from you all. Thank you!

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