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7th recurrence of bladder cancer this time in left ureter

2 months 4 weeks ago - 2 months 4 weeks ago #57429 by DougG
Elrojo,
You are right. It won't be easy, but you can do it! When my husband had to go to Vanderbilt for surgery there, I called and asked who in the practice would be best to do the surgery he needed (left kidney and ureter removed in March, 2016). It took a number of phone calls, but a doctor actually called me back himself. Keep pushing. It will be worth it. Call the HMO again today and ask for the status of your case. Best wishes to you. My husband is doing well.

Anita
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2 months 4 weeks ago #57427 by elrojo2019
Thank you Sarah for your reply. After 3 calls to my hmo i finally got someone to open up a case for me... i will be calling back i am sure. Maybe i haven’t done this till now because i know it won’t be
easy .Thanks for the encouragement.

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3 months 8 hours ago #57406 by Alan
I am asleep! Sara Anne gave the best advice. Time to be REALLY proactive and attack this. The second opinion at a major center is where to go! And, I do believe The University of Colorado is well respected.

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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3 months 9 hours ago #57405 by sara.anne
This is the time to get serious with your HMO. You DO need a second opinion! The University of Colorado has a very good urology program and you should ask...no DEMAND..that you be allowed a second opinion there (or at a place like MD Anderson, USC, Stanford if you could get there.) If you get the run-around ask to speak to a supervisor and if you get a run-around there keep going higher. If you still get no help a letter to a congressman and a letter to your local newspaper as well as the Denver one may stir up some action.

This is YOUR life...FIGHT FOR IT.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 months 11 hours ago #57403 by Alan
Elrojo,

Welcome! You have had more than your share of the bad. I just wanted reassure you that your post has been seen. Beyond that I don't have any experience of the ureter being involved. Hopefully someone will be able to chime in with some good advice. You certainly have some good observations walking in your faith and taking one day at a time. Those two are important.

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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3 months 20 hours ago #57402 by elrojo2019
Hi - i am new to an online support forum but after the last week and not driving today i need to express myself. I have been a bladder cancer patient since 2007 and after a recent surgery on 4/18
where the doctor tells me the cancer has gone into the left ureter and he has no path forward i am
just totally discouraged and after all the surgeries (7 times) to remove tumors, going thru 3 years of
BCG treatment, having to have my urethra rebuilt due to lack of being able to urinate and the chronic
pain i deal with most days, i do not know what to do next. Tomorrow i am going to call my HMO and
ask for a second opinion but i expect to get the runaround from them. Other stuff- generally i try to
live one day at a time and walk in faith and have taken in stride what has become the”good” that came from being a cancer patient, retiring from my job, moving to a small community in the mountains of Colorado and when i havent been “down” because of recovering from a surgery, try to
keep living life no matter what. What i would like to ask about is anyone elses experience when the
cancer has gone into their ureter and any ideas around that. Presently, i am waiting for my urologist
to give me the staging of the tumor they biopsied and i realize this has to be done first. Thanks

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