Bladder cancer>>> bladder removed

8 months 2 weeks ago #61534 by sara.anne
Replied by sara.anne on topic Bladder cancer>>> bladder removed
Sarge, you have dealt with these issues with grit and courage!!  Congratulations!!

AND I have a friend and neighbor who thinks that pickleball is the answer for everything.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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8 months 2 weeks ago #61533 by Alan
Replied by Alan on topic Bladder cancer>>> bladder removed

Thanks for sharing. Sounds like quite a journey. Glad you chose living and look forward to reading about you pickleball exploits!

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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8 months 2 weeks ago #61532 by Sarge73
Bladder cancer>>> bladder removed was created by Sarge73
This is my first post as a new member, so hello everyone.

I initially was diagnosed with bladder cancer in 2009 when I came down with a UTI. Never thought about UTI's since I was a male, but so much for that. My initial cystoscopy was something never knew I would go thru and and came back low grade. Was given BCG treatment to stop recurring issues. Springing forward to 2020 after way too many cystoscopies over the years with low grade diagnosis over the years. Something changed in 2020 that I was told by my urologist, whom I trust very much, needed mitomycin treatment for 6 weeks.

Unfortunately i initially started to have bladder spasms which were brutal. During my 4th treatment I had a spasm attacked and rejected the mitomycin which stopped my treatment. I started to constantly urinate and had to start wearing urinary pads, bought at Walgreens [ their brand,  along with incontinence underwear I located on Amazon. This went on for some time. My life changed dramatically at that point. I could not go out and do anything, and not too mention this was during the pandemic. This continued into 2021. 

September 2021 my urologist attempted Botox installation which he could not do since examining my bladder it had shrunk and hardened to the point that it only held 1 or 2 oz of urine. At that point the decision after consultation was to remove the bladder.

On Nov 2nd 2021 my bladder was removed with an ileal conduit and stoma. Along with the bladder, 10 lymph nodes were removed. During biopsy of the bladder and lymph nodes, cancer was found in the muscle of the bladder and 1 lymph node. I was in the hospital for 7 days.

I had a PET scan 3 weeks ago and the diagnosis showed no further spreading of cancer....

 VNS came to the house for 8 visits to follow up. But my wife became an expert in replacing the pouch unit, she actually handles it better than VNS.

It's 2 months now and I have totally regained most of my life which was stopped prior to removing the bladder.

Am scheduled for a port to be installed and start immunotherapy on Jan 23rd. 

That's it for now, updates will come after my therapy. Looking forward to getting back on the pickleball court, as I am an avid pickleball player and have note played since the pandemic started.
The following user(s) said Thank You: Alan, bbowlja

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