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5CM bladder tumor found two days ago

1 year 1 week ago #57624 by tgrocky
Hi there,
I have T1HG bladder cancer with CIS and my tumor was a size of a baseball and I had most of it removed via my 1st TURBT and they basically burn it it pieces and suction it out and you are knocked out during this of course, however when they did mine they accidentally put a hole in my bladder which meant I was sent home with a cather for about a week so my hole would heal and that was no fun at all because the day before I was suppose to get the cather out it got clogged up and I called my surgeon and they told me to go to the emergency room to have it flushed out because I was in so much pain because I had to go to the bathroom but my cather was blocked, and that pain was VERY bad. Well when I got to the er they were about to free what was blocking it, which was a fairly nice size blood clot. You do have pain after a TURBT but most of the time they will give you medicine to help.

Remember every bladder cancer patient is unique. No two are a like.

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1 year 2 weeks ago #57611 by Uptight
During the cystoscopy procedure, the doctor found and looked over my 5 CM Papillary type tumor. It is located pretty close to my left side ureter from the kidney so he feels he will need to implant a temporary stint between my left kidney and bladder to avoid the ureter possibly scabbing over. He also stated that the tumor was located in reasonably close proximity to my prostate so he stated he had some concerns if the tumor is found to be invasive. The tumor appeared to lay on the back wall of the bladder and almost on the floor so he was not able to get a good look as to the actual connection point to the bladder wall. They are to call me with a surgery date to remove the tumor and only then we will know how deep the tumor is based. They are planning on doing the removal via a TURBT process so I am intrigued as to how they get a 2" tumor out through a cystoscope? As I have had symptoms for about two years, I am pretty concerned with the size of the tumor and the time the tumor has had to get a foothold in my bladder wall. I will keep updating as the process moves along. Anybody want to provide me info with how the recovery process was after a TURBT?????

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1 year 2 weeks ago #57610 by Knifedealer
Uptight, welcome. I'm happy to hear that the cystoscopy was a breeze for you. Please keep us informed. I had 2 small (1 cm or less) low grade, non-invasive papillary urothelial carcinomas removed last November after the tumors were identified during a cystoscopy that took place almost 2 month prior. That first cystoscopy, albeit brief, was not a pleasant experience for me. I'm happy to report that I had a second cystoscopy, 3 months after the November surgery (TURBt) and the second one wasn't nearly as bad as the first.

One bit of advice given to me that I found helpful: curl toes during the procedure.

What was the outcome of your cystoscopy?

Best to you.

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1 year 2 weeks ago #57609 by Uptight
As the originator of this discussion subject, I wanted to reply to my initial message with a statement to dispell the numerous videos on YouTube as to how bad a cystoscopy is for a man. I had one at 11 AM this morning and it was not that bad at all. You will have to put your modesty aside, as the nurse (in my case was a female) has to pump your business end with a numbing jelly, which does feel different but not painful. The cystoscope went in easy and didn't create any pain such as depicted on the videos I watched the last week. In less than 15 minutes the process was complete.
The reason I am noting this, is that for the last 5 days I have had big time anxiety over this procedure and in actuality I would rather have this procedure than a digital prostate exam. Guy's, don't sweat the procedure!!!

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1 year 2 weeks ago #57595 by Jack R

Welcome to the forum. Sorry you are here.

The youtube videos will scare the pants back on you. Pay them no mind.

For MOST it is no big deal after the FIRST cystoscope. Take away the concern of the unknown and it is just uncomfortable briefly. Peeing for a day or two afterward, for many, can hurt briefly, - drink lots of water, ask about taking Pyridium if needed. Pyridium is over the counter drug, sold as "urination pain relief", stains clothing. It helps.

VA has the right equipment - modern cystoscopes, numbing jelly inserted first (a weird feeling, new experience in itself). Relaxing through the procedure helps (yea, sure). It is no different (at least to me) than being catheterized for 5 minutes. Disclaimer - everyone is different, but always let the team know if something is feeling very wrong.

The worst part of starting out on this journey is the waiting for information. There are LOTS of treatments **IF** it is cancer, but you have weeks before you will have any real information. Stay positive and wait for pathology reports.

Hang Loose. You are on the path to recovery.


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# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back...
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1 year 2 weeks ago #57594 by JigStep
Cystoscopy is anxiety provoking, but with your history (i.e., shot thru) I suspect you'll be able to grin and bear it. (Easy for me to say, since they took my prostate a long time before this bladder thing came up.) When my surgeon came out from the TURBT procedure, my wife said he made a gesture with his hands that indicated it was quite large. At my last cystoscopy however, he said it was quarter size (approx. 2.5 cm), so not as large as I imagined. I think it was a little difficult to judge. The guy that did the first cystoscopy had a screen so I saw it. It was growing out from the bladder wall tree-like with three branches resembling a joker's hat. (Some joke, huh.) Alan's right, you just can't know much until they evaluate it.
Hoping for the best outcome.

7/18 Gross hematuria
8/18 TURBT, papillary urothelial carcinoma, T1 LG
12/18 TURB, benign urothelial mucosa, features consistent with cystitis cystica
9/19 TURBT, HG papillary urothelial carcinoma, noninvasive
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