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Scared and confused

6 years 4 months ago #42607 by Rockyiss
I had bleeding , did a cat scan, they thought I had a kidney stone passing. didn't scope me. Fast forward a year later more bleeding , another cat scan , showed nothing. Week later had the scope done and they found five tumors in the bladder.
If I would have had the scope instead of the c scan the year before , I would not have had the cost , radiation, of 2 c scans, and my cancer growing for a full year.
I would take the scope any day over the cat scan.
Also, one time during a scope my Dr did take a very, very small tumor off. Kinda like a pap smear just a little bigger ouch ! Rocky

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6 years 5 months ago #42314 by sara.anne
A bit of a correction, here, Rebel! They won't ever remove a tumor during cystoscopy!!! They only do that under general anesthesia during a procedure called a TURB (transurethral resection of the bladder.)

A cystoscopy is hardly more invasive than a dental exam (the other end, I know) where a very small camera is inserted into the urethra so that the urologist can see inside the bladder. Takes about 10 minutes and is no big deal.

A TURB takes several hours (including anesthesia and reoovery) and may, or may not, require a catheter.

Both procedures can be LIFE-SAVING and are well worth any minor discomfort involved. I have had to have CT scans periodically and submit to this gracefully...but I would do ANYTHING to avoid the excessive radiation involved.

Been there, done that, multiple times.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 5 months ago #42308 by goodoldrebel
In your case they should remove the tumor when they do the cystoscopy. It's good that they did a CT scan and urine cytology first. I went to someone the other day after this gross hematuria and all he did was urine sample (no cytology) and gave me an antibiotic. I know its not an infection yet I think it was given was just to rule out infection and of course require more return visits

2 years ago I had a large bladder stone removed twice as all of it wasn't crushed or removed the first time. Recently, I noticed that after a round of golf, I have gross hematuria. I have also felt like I have something inside making my bladder sore. Sort of the same feeling as when I had a bladder stone. I probably also have BPH as since taking uroxatral my urinating at night has decrease to 1 or at the most 2 times.

I really don't want an invasive test like a cystoscopy as the first line of defense since afterwards you are sore and its hard to urinate for the first time because of the soreness of the invasive test. Urodine etc. doesn't really do the trick, yet I know I should rule out bladder cancer even though the bleeding occurs after either a round of golf or a fast run around the track or some physical athletic activity.

I know that its probably out of sequence but I want to try to get a CT scan first and cytology of the urine before any invasive test like a cystoscopy. I'm not sure if I can get the urologist to do these first for most urologists like to have you make multiple visits instead of getting noninvasive tests first. At least a CT scan would tell me if its a bladder stone and the urine cytology would pick up any sluffed of cancer cells.

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6 years 5 months ago - 6 years 5 months ago #42292 by CatherineH
Hello and welcome... I have been where you are, as have most of us here. It is truly a scary and confusing time. My gynecologist discovered a "mass" in my bladder during an ultrasound looking for why I might have been experiencing a little blood in my urine. I went to her because a bladder issue never crossed my mind since I'd never even had a UTI in my life. Had never really heard of BC at that point. But she was thorough and voila... there it was on the screen. A walnut looking thing clinging to the lining of my bladder about 1.6 cm.

Before I left her office, her staff called a local uro and made me an appointment and sent the ultrasound pictures to him. At that point, we knew there was something in there that had to come out so we went straight to scheduling the surgery (TURBT). I was sent for a CT scan a few days before and the urologist used that as a reference for removal. He found only that lone tumor and got it out of there. A TURBT is an outpatient procedure and isn't nearly as scary as it sounds.

After my path report came back, the uro sent me to a larger hospital because mine was not the more typical type of BC. If there's something that's not supposed to be in there and a CT scan has verified it, not sure why they would do a cystocopy first since they can take a look inside at the same time as removal.

As Mike said, finding a a hospital known for expertise in treating BC is very important. A recent study has shown that many urologists are not really experts in BC and do not follow the recommended treatment protocols. I see you are in California. If you let us know where, someone here can give you some recommendations as to where you might go for a second opinion.

And adding to Mike's post... although just hearing the word "cancer" scares us witless (as someone here aptly put it), it is NOT a death sentence. We are here as a testament to that. First step is to find out if it is cancer, then if so, what type you are dealing with so you and your doctor/surgeon will come up with a plan to attack it and defeat it.

We understand the newness and shock of your diagnosis. Please post any other questions or concerns you or your wife might have and we will help in whatever way we can.

Best wishes... Catherine
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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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6 years 5 months ago #42289 by mmc
Hmmmm. First off it sounds like you need a new urologist!

A urologist cannot diagnose cancer without a pathology evaluation. Doctor's can say "It looks like cancer in my experience but we don't know for sure until we get it out and test it".

Waiting until July 17th to even bother looking in there to see what can be seen seems like a long time. It does make sense to look and see before going in for the surgery but not if it will cause excessive delays. They do know there is a mass.

Your doctor should not have said it was cancer. That just causes panic prematurely. It could be something else. However, I also don't want to get your hopes up because tumors like that tend to be cancerous. Grade and stage mean a lot though.

Personally, I would suggest getting to a urologist at a major bladder cancer center if at all possible for your follow up. I don't appreciate a doctor being so cavalier with the cancer comments. Mine told me originally that mine was "likely cancer" when he did my cystoscopy. It looked just like CIS and that is what it wound up being. He tried to get me on the surgery schedule for the following week but I was going to be traveling out of the country for a couple weeks. He said it was OK for me to go but to get scheduled for as soon as I was back. I'd rather have a doc that explains things that way.

Lots of us here have had bladder cancer of various stages and grades. We are still here to talk to you about it. Please understand that, even if you do have it, it is not necessarily a death sentence. First step is get it looked at and then (likely) get the tumor removed. Then a pathology report to see if it is cancer and, if so, how aggressive is it (grade) and how deep is it (stage).

We are here for you in the mean time.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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6 years 5 months ago #42288 by DougG
Take a deep breath. On Monday, call the urologist office and explain that you are worried and would like to get in to see the urologist as soon as possible -- could they please call you if they have a cancellation? Try not to let your imagination go too wild with this. You have hit a bump in the road. I don't blame you for wanting to deal with it ASAP. That's my personality too. Good luck!

Anita

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