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Still having pain 10 days after TURBT

2 years 10 months ago #50447 by DougG
Catherine,
The medicine that Sara Anne is referring to is available over the counter: AZO Urinary Pain Relief, so maybe you can try that today since you can't get in to a doctor until tomorrow. The prescription name is Pyridium. Hope you can get to see your doctor quickly tomorrow.
Anita

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2 years 10 months ago - 2 years 10 months ago #50446 by Alan
Catherine,

As we often say, welcome but sorry you have a reason to be here.

IF the diagnosis is indeed high grade then you need more attention as Sara Anne said. This is a tricky but, treatable disease. A high grade DX often calls for a CT scan to be sure all of the urinary tract is observed. Also, high grade often calls for a 2nd TURB to be sure margins are well defined.

On the anxiety. Pretty normal for all of us. We all deal with it in different ways. The cliche of "one day at a time" is what I hang on to because that is all I can control. Plus, for the vast majority of us something else will be our demise-hopefully many years down the road.

Keep asking with questions as someone that has gone through this will have insights.

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 10 months ago #50445 by sara.anne
Hi Catherine, and yes, it is unfortunate to see you here but we do welcome you.

First, any time that you have something unusual, you do need to contact your doctor...as you are doing tomorrow. Of course, nothing like this happens except on a weekend :( And normally a patient does not have discomfort or pain this long after a TURB.

Your doctor said that the tumor was "high grade?" Do you have a copy of the pathology report ....you should. Usually high grade bladder cancer is treated, probably with BCG or something similar, and NOT put on a "watch and wait" schedule. This is something you might want to explore with your urologist and/or seek a second opinion about the treatment plan at a place that sees and treats LOTS of bladder cancer. Many urologists are more familiar with prostate issues than with current thinking on bladder cancer.

As for living with the sort of black cloud over your head, you do, kind of, get used to it. I was diagnosed with high grade just 8 years ago....the first few months were a bit nerve-wracking, but as I realized that my treatment was working and that my uro was right by my side, the anxiety subsided a bit. But I have to admit that I get a bit nervous when my annual exam time comes!

Hope your doctor gives you some relief. There are prescription meds that can alleviate the pain and irritation (and they have the additional fun property of usually turning your urine a bright orange or blue!).

Please let us know what happens.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 years 10 months ago #50444 by Catherine
Hi - I am (unfortunately) new to the forum - 58-year old female, no previous history of cancer or other health issues. I had a TURBT 10 days ago. The doc removed a 2 cm malignant mass (Ta, high grade). No further treatment but will follow up with cystoscopy every 3 months. I know it was found early stage but I'm still feeling really scared and have a lot of questions.

First, I am still having bladder pain - a deep ache in the lower part of the bladder, especially at the end of urination. Yesterday, I had significant pain in the bladder and the left kidney and some nausea. The severe pain let up after about 5 hours. I will follow up with my urologist tomorrow. How long does the pain after TURBT usually last?? I was expecting a fairly quick recovery (based on what the doc said) but I'm still feeling pretty crummy.

Second: From what I've read and what the doc told me, this type of cancer has a high recurrence rate. How do some of you deal with the anxiety around this?

Glad I found this group and I look forward to your replies.
Catherine

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