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New here; TURBT #3 soon

2 months 4 days ago #56630 by CoffeeLion
Just a follow-up...I had the TURBT yesterday. Now comes the wait for the pathology report. There were a few very small tumors and one that the doctor described as closer to medium sized. I had mitomycin in conjunction with the surgery. No side effects from that (as yet) but have a prescription for Pyridium just in case I have burning.

Initially I was told I wouldn't have to go home with a catheter this time, but because the one tumor was larger sized, I have the cath until tomorrow, which is no big deal after having them for 5 or 6 days after the other surgeries.

I gave a detailed account to the anesthesiologist about my experiences after the second TURBT (the shaking and uncontrollable jaw clenching in recovery room, and bad sore throat and muscle pain in the days afterward.) She went down a size with the breathing tube and made some sort of adjustment in the muscle relaxant procedure, and I'm much better this time. Woke up shaking-free in recovery. Felt completely normal within an hour, probably could have driven home (but of course did not.)

Hoping for the best pathology report possible.

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2 months 2 weeks ago #56521 by Alan
It is a set of fresh eyes. The big question to ask if it comes to a cystectomy, how many have these docs done? From what I have been able to research you want someone doing 25-35+ a year.

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 months 2 weeks ago #56520 by CoffeeLion

I second Sara Anne on a 35 year old. Sounds she has a few years experience and should be up to date on new techniques. I have always wanted Docs between 35-55 for those reasons.


Thank you, Alan. I guess I was spooked at the thought of a possible future cystectomy and whether such a young doctor could possibly have performed very many of them on females in the small state of Delaware. I don't have the option of going out of state. It looks as though the best/most experienced couple of doctors here in Delaware from whom I'd consider seeking a second opinion are at the same practice as my doctor. (Is that a thing? Getting a second opinion from the doc down the hall?)

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2 months 2 weeks ago #56519 by Alan
On the catheter. It is pretty simple to exchange from bag to leg just make sure the nurse shows you once on how to do it. Plus, be sure you always keep the bag below the waist/bladder as you don't want fluid to reverse giving potential for infection which you probably already know from past experience.

I second Sara Anne on a 35 year old. Sounds she has a few years experience and should be up to date on new techniques. I have always wanted Docs between 35-55 for those reasons.

Shaking can simply be a cold hospital temps as most are cool or, the meds. Or, assuming you were intubated for breathing that also can make your throat sore/irritated. Muscle pain depending on how extensive the TURB was can also be an explanation for that. Communication to your team is always welcome. They can't help if they don't know.

Nephrostomy tube! Can't help you there as I have no experience.

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 months 2 weeks ago #56516 by CoffeeLion
Thanks again. I've spent the morning reading every word of every report available to me through the urologist and hospital patient portals (and since the pathology reports weren't in either place, I called the urologist office yesterday and had them emailed.) Ultrasounds, a CT scan, an MRI, path reports, surgical notes, patient visit notes...no mention of CIS.

At the hospital with the first procedure it was mentioned to me that I might have to have a nephrostomy tube due to the position of the large tumor, possibly blocking the right ureter, which she couldn't visualize during the surgery. That didn't end up happening. The CT scan at the hospital after the surgery, and ultrasound after the second TURBT, showed a urinary spray from the right ureter, and no kidney enlargement or other inflammation that would be seen with a blockage. But I'm still concerned I might wake up with one after this next TURBT. The little I've researched shows the tube coming from the patient's back, which means care of the site would require someone else (which worries me because it's not something I would want teens to take on, but I really don't have anyone else). The procedure for changing the leg bag and tubing also looked complicated and somehow scarier than the process of switching from the large bag to the leg bag of the urinary catheter (which I didn't do anyway). Does the need for the nephrostomy tube ever go away so that it can be removed?

One more question that someone may be able to answer...I have rheumatoid arthritis, currently in "remission," and I'm on a several-year break from the methotrexate I took for about 5 years. Anyone else with RA?

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2 months 2 weeks ago #56513 by sara.anne
You do have a lot of questions that only your doctor can answer regarding the side effects of anesthesia. The doc is a better source than Google!! I do suspect that the reason that you had a catheter was because of the size of the tumor which required a bit more extensive surgery than some. I have had two TURBs, no cath.

I remembered in the middle of the night (ouch) that I hadn't answered your questions about CIS!! Carcinoma in situ is not like a solid tumor, but appears more as a rash on the surface of the bladder. It would appear during cystoscopy as inflammation or irritation. It should appear in biopsy samples, assuming that some were taken in the areas of suspicion. AND CIS is always high grade, with BCG being the initial treatment.

I wouldn't worry about a "young" doctor....she would be more likely to be up on current medical practice.. I am always more concerned with an "old" doctor...have had several that I was comfortable with RETIRE.

Sara Anne

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