Bladder Surgery to remove and determine stage, type, etc..

Posted by stans2000 @stans2000, Feb 6 10:02am

I am 52 years old. I have never smoked, but I did serve in Iraq 20 years ago where I worked near the burn pits (Toxic Exposure). On Christmas morning, while at the airport to fly to Arizona I had blood in my urine a couple of times. I quickly made an appt with my doctor for Jan 3rd. When I landed, no more blood or thereafter. Well, I kept the appt and all my tests came back normal. There was no microscopic blood in my urine. He decided to schedule a CT scan (Jan 17th) just to make sure and 9 days later he called me on a Sunday night (Jan 26th) and gave me the news. I have a mass 2.9cm x 2.8cm x 2.2cm in my bladder. No findings for metastatic disease in other areas. We were able to get an appt with a Urologist (Jan 28th) for a Cystoscopy. Based on his findings and he took pictures, I have Papillary tumors. During the Cystoscopy they took some urine for tests. They found numerous microscopic red blood cells in the urine. He didn't take a Biopsy but decided to go ahead and schedule surgery (Feb 13th) for Bladder tumor scraping, biopsy, and cauterize the area to stop the bleeding. I will leave with a Foley Catheter, which will be removed on Feb 17th. I won't know the results (Stage, Grade, type of cancer, non-invasive or invasive) until my follow-up Feb 27th. It seems like a long time to wait given others on here received their reports in a couple of days. Maybe my pathology report will be available to me earlier through my online medical records.
Should I get a PET Scan? Can anyone tell me what recovery is like? What should I expect going through this process?

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@larryyaz

I had the TURBT and the recovery went smoothly. Rest and a lot of liquids were prescribed. I'm on Medicare, so they provided a visiting nurse who was very helpful. I had had a problem with clots forming not allowing me to pass urine. The visiting nurse was able to flush the catheter tubes, and showed me how to do it myself. That was most helpful. The only downside with the catheter is the spasms I experienced from time to time. They were enough to make me swear and moan a bit, but easy enough to tolerate. It was a relief to finally have it removed.
A followup cystoscopy revealed some vestiges of the cancer so I underwent BCG treatment which was tolerable but not all that pleasant. So far my bladder is clear.
I hope your situation turns out to be favorable. Wishing you all the best!

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Great news, @larryyaz. Were you treated at Mayo Clinic? How often are you follow-up appointments?

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When I read these stories about what the men and women have to go through for all the issues, pain, drugs, and chemo treatments, not to mention the costs, I feel badly for all the mis or poor diagnosis's that seem to exist today. I just returned from my 11 th annual checkup at the Mayo Clinic. Years ago I had a primary doc who laughed when telling me about needing a terp. I left him for a urologist at a major hospital in Tucson. He could not wait to do day surgery, then was frustrated when I asked for second opinion. He told me the other hospital was too political...his terms. I gave up immediately on the so called local docs and called the Mayo. After a day surgery, short recovery, I was on the table for 9 hours, and thank the Lord, I was done. No bladder, no prostate, no chemo, but a new life without the worry or complications beyond an occasional leak in my pouch. I listen to all these sad stories about issues and complications with so many treatments. Get the damn bladder out and enjoy your life,

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You are not alone.
My profile is blood in urine, tests, exams, scans, specialist I trust, cystoscope, 70% of tumors removed, biopsy, high grade papillary urothelial carcinoma, non-invasive. Second surgery in 2 days to remove the remaining 30%. I am opting for BCG treatment for 6 weeks, check-ups regularly thereafter.
My only advice is remain optimistic and be kind. Your body will appreciate it and act accordingly.

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