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What else could it be at this point? Desperate for responces

1 year 7 months ago #54593 by Jack R
Charles,

I know it is hard, but try to relax. Here are the stats you have been searching for.

"An accepted risk of an asymptomatic hematuria patient having Risk of bladder or renal cancer is 0.5%." Read the supporting documents, below, then see the better news at the end.

SOURCES:

"What is the prevalence of serious urologic disease with hematuria? In pts with asymptomatic microscopic hematuria, risk of neoplasm, calculi, hydronephrosis is 2.3%. Risk of bladder or renal cancer is 0.5%."
Source: https://medicine.ucsf.edu/education/resed/Chiefs_cover_sheets/hematuria.pdf

Estimated New Cases of bladder cancer in 2017 is 79,030.
https://seer.cancer.gov/statfacts/html/urinb.html

Estimated New Cases in 2017 is 63,990
https://seer.cancer.gov/statfacts/html/kidrp.html

Since there is ONLY an 0.5% of either bladder OR kidney cancer given the above patient assumptions, we can distribute the risk based on the number of annual new cases. For that patient, then the bladder cancer risk is just 0.28%, and the kidney risk is 0.22%

It is thus clear that the asymptomatic hematuria patient is 99.72% likely to NOT have bladder cancer. Do continue to have a full work up, but there is no cause at this point to assume the worst.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis

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1 year 8 months ago #54592 by Charles1711
Thank you for your reply Sara Anne. I just wish I could find a list of these other potential things to ease my mind. Hours and hours of sitting here it seems the primary things are


- Cystitis
- Urinary incontinence
- Overactive bladder
- Interstitial cystitis
- Bladder cancer

BC seems to be the only one that fits in my case. I'm just incapable of functioning right now. I'm just desperate for a cystoscopy. I wonder if you can get one sooner if paying for it out of pocket somehow.

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1 year 8 months ago #54591 by sara.anne
No, you are not being overly dramatic. You are having a natural response to suddenly being faced with the "unknown." Alan has given you some good advice, and no matter what the ER doc says (he is NOT a specialist in bladder issues!) there ARE lots of things other than bladder cancer that could cause your symptoms and while not unheard of, bladder cancer is usually found in older patients.. AND even if it is bladder cancer, if found early, it is very treatable.

It may take a while to figure out exactly what the diagnosis is but you are young enough and healthy enough to get through this. I remember, on hearing my diagnosis for the first time and knowing nothing about bladder cancer, that I thought "well, at least now I know what I will die from." That was just about 10 years ago this month; I was diagnosed with high grade carcinoma in situ (CIS), went through a series of treatments over 2 years and have shown no signs of bladder cancer ever since.

There are many of us here cheering you on!

Sara Anne

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

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1 year 8 months ago #54590 by Charles1711
Thank you for your reply Allan. I just don't know where else to turn. I've spent the last 11 hours in bed just thinking the worst. I suppose the fact that so many other factors (kidney stones, UTIs) have been ruled out, it has me feeling hopeless.And the fact that the ER doctor who saw a clear CT scan on my bladder and kidneys told me now it can be only one of a few things bladder related, bladder cancer is at the top of the list. That part has me just devastated.

I know I must come off as overly dramatic but I haven't stopped crying off and on all day and missed some work. I just wish I knew of other things it could be at this point.

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1 year 8 months ago - 1 year 8 months ago #54589 by Alan
Charles,

Welcome! We are all simply volunteer/monitors so take any opinions for what they are worth!

First, take the deep breath and realize this won't be resolved in a day or weeks. One day at a time!

On to your questions. This could be MANY things other than bladder cancer. However, you are doing the right thing by getting a URO. The only comment here is to make sure he/they see plenty of bladder cancer cases as so many treat prostate as a bulk of their work. For example, this could be irritation by stones being passed, a kidney issue of some type, sometimes bleeding happens without any definitive explanation. With frequent urination I would guess there is some type findable answer.

The normal protocol will be a cystoscopy peeking into the bladder. Also, a CT scan with contrast dye is usually done to see if there are any indication of a mass or growth...and realize that some of these can be simply a cyst. If either of these show anything to explore you likely will have a TURB (transurethral resection of the bladder). This is usually a simple surgery done under anesthesia to take a biopsy as needed and read by a pathologist. Thus, you won't know much until part or all of these steps are taken. The waiting is the hard part but, cancer doesn't go from 0-75 MPH in a week or month so try and take each step as they come. If it is cancer it is treatable and beatable with normal lives.

Keep posting as questions arise as someone will have our 2 cents worth as we have been there and done that.

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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1 year 8 months ago #54588 by Charles1711
Hello everyone. Firstly, let me apologize if this doesn't belong here. I just didn't know where else to turn with this question. Since December 30th I have been urinating every 15 minutes every day. Like most, it was treated as a uti. Two weeks and three antibiotics later a uti was ruled would. Blood work came back fine. Microscopic hematuria was found during one of the 4 urine tests since the beginning. Yesterday morning, a urine culture completely ruled out a uti as everything was clear. Per the advice of my doctor (and much to the annoyance of the ER doctor) I went and just yesterday returned from the emergency room. Full blood, urine and CT scan of the kidneys and bladder. Everything came out clear.

The doctor (who said a doctor should never tell you to come to the ER for a case like this, I sheepishly agreed) said I need a urologist for a cystoscopy immediately because every thing else is clear, this is a bladder issue. He mentioned about 3 things (aside from prostate) that could be causing such frequent urination and microscopic hematuria, and no real pain or any discomfort. One of them being bladder cancer. For the life of me and cannot remember what else he guessed could be causing these symptoms after he said the word cancer. I was just wondering if anyone else knew what else, bladder related, could be causing these symptoms. I know the signs point to it but I'm just desperate.

I got an urologist appointment in a week but I'm just desperate to talk to anyone right now. I'm 32 years old, never been really sick and have lived a healthy life, although I know that's irrelevant in most cases. I've been awake all night for the past 7 hours just having a tearful breakdown. I've read hundred's of people's stories tonight and I'm simply just not as strong as these people.

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