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Not diagnosed, just worried

3 years 7 months ago #50032 by Alan
Very standard protocol. CT Scan with a scope, then if they do see anything in the bladder a biopsy is done. However, one step at a time. Who knows, the CT scan may show something like a stone (not good to speculate I am just saying one day at a time and one problem at a time)!

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 7 months ago - 3 years 7 months ago #50031 by LauraJose
Thanks Anita for the information. I don't understand how that works, it seems like if you have a cancer that is bleeding in your bladder (or elsewhere in the system) that you would have blood in your urine every time you pee. But, that is apparently not how it works.

Good news is that I am being checked out. I don't have any specific information yet, but I feel like I am on my way to getting some answers. I know I will be able to deal with whatever comes my way.

Today I met with my urologist in Gainesville. She was very attentive to the information I could provide. (I had a written chronology - brief, just 1 page - of every date I have seen blood in my urine since October 15. All together I have had 31 incidents of observed blood.) She sent me directly over to have a CT scan, actually 2 scans, one with a dye in my blood stream and one without. The radiologist will provide the report 24 to 48 hours from when the test was done today. She wants to see those results and then do a scope exam. My cystoscopy is schedule for next Thursday at 11, after which, or during, she will discuss both the CT results and the scope.

So I have one more week to wait, but if I had stayed with the referral my GP made I would have my first consultation with the urologist on Dec 14. So I feel like I am moving forward at a much better pace with this Doctor.

All in all I am more calm about what lies ahead. All of you on this forum have provided me with much of that reassurance. Thanks.

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3 years 7 months ago #50018 by DougG
Laura,
Yes, intermittent blood in the urine a symptom of bladder cancer. Doug has never had continuous blood in the urine. Best wishes and let us know how your appointment went.
Anita

Anita
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Caregiver

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3 years 7 months ago - 3 years 7 months ago #50012 by Alan
Wonderful! If it's BC you are on your way to beating it. If something else you'll ID it and stomp it out too! I believe Shands has a good reputation also.

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 7 months ago #50011 by CatherineH
Laura... That is wonderful news that you have an appointment for Thursday. Your persistence has paid off! It is always comforting to go to a doctor who people you know can recommend as a great doctor and an expert. Please let us know how your appointment goes.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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3 years 7 months ago #50010 by LauraJose
Alan,
Thanks for the continued support. Yes I have an appointment. I ended up going with Shands - associated with the University of Florida. I have an appointment with a woman doctor urologist who does a lot of bladder cancer work.

It is a little bit of a longer drive from St. Augustine than Mayo Clinic in Jacksonville would have been, but a cardiologist, who is the sister of a good friend of mine, highly recommended Shands. So I went with Shands. I called this morning (Tuesday), and I have an appointment for 9:30 on Thursday morning. My husband is going to go with me, so all in all I am feeling pretty satisfied right now.

I agree, I don't want to jump to any conclusions as to whether I do or don't have bladder cancer. But I do want to have someone try to track down why I am urinating so much blood. Two episodes today. :(

I am glad I am not waiting another 2 weeks just to have a consultation visit.

I'll post back with whatever the news is. Thanks again for the words of encouragement.

Laura

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