Options: Trial study or Remove it.

4 years 5 months ago #58456 by NelsJenn
Replied by NelsJenn on topic Options: Trial study or Remove it.
Dear Trpshtr,

I was diagnosed with BC a few months ago, so I don't have much experience to give you qualified advice. I do believe the wealth of experience and knowledge from other members here are awesome.

I just wanted to say to hang in there. We are here to support you through this BC journey!

Bladder Cancer - Non-Invasive 2019
High Grade - T1
2 TURBT - 2019
9 BCG Infusions - 2019
Ureter Tumor Discovered - 2021

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4 years 5 months ago #58455 by Alan
Replied by Alan on topic Options: Trial study or Remove it.
Trpshtr,

Lot's of things to think about. Sara Anne added some good advice about trials. here is a bookmark many have saved about the pro's and con's of the 3 diversions: my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction--diversion

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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4 years 5 months ago #58451 by dukel
Replied by dukel on topic Options: Trial study or Remove it.
Just wanted you to know I'm thinking about you. I had a great deal of support from people on this site when I had my surgery and I hope you fine the same, whatever your decision is. If there is anything I can do to help don't hesitate to ask!
Wishing you the best.
Duke

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4 years 5 months ago #58448 by TrpShtr
Replied by TrpShtr on topic Options: Trial study or Remove it.
Thanks Sara Ann (for keeping an eye on the site). What's the chances of success if I let Dr do Chemo + GCG or whatever else chem's that are available - but that is not a Trail. You know - as a last effort before Cystoscope?

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4 years 5 months ago #58447 by sara.anne
Replied by sara.anne on topic Options: Trial study or Remove it.
There are clinical trials and then there are clinical trials. It all depends on who is doing it, who is paying for it, and what the benefit to you might be I wouldn’t dismiss the idea just because it’s a clinical trial

On the other hand this is an important decision and a very personal one that only you can make . As has often been noted here on the forum no matter which diversion an individual has they generally seem to adapt and be happy with it .

Wishing you all the best as you make this important decision

Sara Anne

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

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4 years 5 months ago #58443 by TrpShtr
Replied by TrpShtr on topic Options: Trial study or Remove it.
Dr wants me to go the trial route. Needs guinny pigs who are willing to go thru whatever they throw at them. Literature lists all kinds of very serious complications and side effects. Not to mention all the x-rays & CT scans (which builds up 66% of a one year exposure of one who is an x-ray tech. Goes on for 2 yrs if tumor responds.
Guess I'll have it removed. But which diversionary method? Each has its own + and -'s. Neo bladder fans seem to be happy they chose it but it's a lot of trouble for about a year. Ostomy bag seems the oldest and simplest. Can't find much on the Indiana Pouch option. I will research and study and pray. Will have to make a decision this week. Let you all know what I decided. Chuck

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