Greg, newly diagnosed Kidney Stone and Papillary Tissue

2 years 5 months ago - 2 years 4 months ago #56229 by Regor
Hi all, and thank you for hosting a great forum!!

Like most, the story seems the same.
I saw visual blood in urine.
Primary care Dr. found nothing and I thought - oh, just a fluke.
A month later Urology reached out to me to perform a CT Urogram (a pre-requirement for the Cystography).
Had the Cystography Thursday and was informed of a 5mm stone, and then we did the internal bladder scan revealing quote "patch of papillary tissue at left bladder wall suspicious for bladder cancer" Recommend TURBT".

I'm in the investigative state now, reading, reaching out, trying to figure out what this really means. Cancer or not, easy or hard, life changes, etc.

I'm a 55 year old male, I'm on 16 years of Type 2 Diabetes, so I'm not new to life style changes and life dealing you cards that you need to deal with.

I will NOT let this get me down and will accommodate to the consequences!

Thank you all, and I'll be looking at all your posts as experiences to help me.

Regor (aka Greg)

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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2 years 5 months ago #56233 by Alan
Welcome Greg,

Ask away as needed, someone will pick up. Yes, with what you describe a TURB is about the only way to diagnose what may be there. You really won't know what is going on until pathology reports what they find. Let's just hope the stone stirred up other tissue or some other benign situation.

IF this should be bladder cancer, you will see many survivors here and know this is beatable and treatable.

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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2 years 5 months ago #56366 by Regor
Status on my process, from someone in San Diego, using Kaiser Permanente.

KUB x-ray was just resulted - the left lower pole renal 5mm Kidney Stone is visible on fluoroscopy, so I could be a candidate for ESWL (shockwave treatment) (in the future following the bladder tumor treatment).

Surgery scheduling for Bladder Tumor (TURBT) has called and here is the Kaiser process -
They called 1.5 weeks after my Cystoscopy, they take down any upcoming date commitments (travel, holiday, etc).
They also note if you are willing to take someone's cancellation date. That's the extent of the phone call.

Once again a waiting game. They like to schedule a TURBT 1-3 weeks in advance and want to have it complete within 6 weeks of Surgery scheduling making their initial call. So timeframe from Cystoscopy to TURBT could be approximately 8 weeks. This seems a bit long compared to other health care providers, although I'm guessing they all have their own process.

Regor

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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2 years 5 months ago #56379 by Alan
Your time frame is probably a little longer from what I was used to but, 8 weeks for the total workup is not unusual. This time of year with people trying to use their HSA $$$, covering deductibles etc is what has probably has made this a little longer cramming year end stuff in. I'll add that tumors normally don't grow that fast to where 8 weeks probably is not an issue. I know, easy for me to say at this time. You still should be OK.

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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2 years 4 months ago #56442 by Regor
Reached out to my provider this week. No news on TURBT date, but did find out size of tumor

Bladder Tumor - 1 CM
Kidney Stone 5 mm

Both seem to be about average from searching through Forum.

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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2 years 4 months ago #56467 by Regor
TURBT scheduled - Friday 4 January. Pre-op Lab work done, and Pre-op appointment scheduled. I've built up my list of questions and ready to get this done :)

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG - Jan 2020 Complete

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