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T1G3 multiple sites

11 years 10 months ago #11828 by marie
Hi everybody who replied to my note so far,
Thanks so much...I think I have made my decision...Thanks for all of your input. Dan, I would like it if you would send me the article...I think you probably need my e-mail and it's This email address is being protected from spambots. You need JavaScript enabled to view it..
Warm wishes to everybody...I'll be back on soon,
Marie

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11 years 10 months ago #11795 by timb
Hi Marie

I had multiple Ta G1 - 3 tumour with CIS and went with the neo. In your situation, looking back, I probably would. For me personally, the op has been a lot better than I thought it would be. My lifestyle is very much as it was before.

Tim

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11 years 10 months ago #11793 by dmartin12358
Hi Marie,
T1G3, multiple sites, early recurrences???

If it was me (and it was), I'd yank out the bladder. I did, with no regrets.

If you want to read an excellent article that spells out the pros and cons, let me know and I'll email it to you. Title is "Indications for Early Cystectomy".

Good luck with your upcoming RC.
Dan

Dx 7/04, CIS + T1G3, Age 50
2 TURBTs
12 BCGs
Cystectomy 8/05 USC/Norris
So far, so good (kow)

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11 years 10 months ago #11785 by Andy_D
Its an extremely difficult decision. I am 36, was 35 at time of diagnosis with T1G3, but with angiolymphatic invasion and multiple sites, with CIS. The evidence for this particular type of disease is unclear, and I took the pragmatic view that this was likely to behave more like a T2 tumor. I had a cystectomy and neobladder, and also underwent 3 months adjuvent chemo (MVAC).

It has been a difficult year, but worth it for us as a family. We decided that despite the risks of the surgery and chemotherapy, we were not prepared to discover tumor at a more advanced stage after TURBT and bladder/local chemo.

As I said at the beginning, it was a difficult decision. We will never know whether I could have 'got away' with bladder sparing treatment, and luckily I managed to survive the chemo without too much trauma. I am still getting to know my bladder, but am fit and well, and able to mountain bike better than I have for years.

Good luck with your decison, and best wishes. Andy.

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11 years 10 months ago #11779 by marie
Hi Rosemary,
Thanks for this note and the one sent to me personally (hope you received my other reply too). Your comments here back up everything else I'm finding out, and as I said in my personal note to you, I have made my decision and the RC will be Jan. 18. I will certainly continue to come to this forum...it's a great source of info and support.
Very best regards and good fortune to you,
Marie

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11 years 10 months ago #11762 by Rosemary
Marie,

When I was first diagnosed at the age of 54, my Urologist sent me pronto to the Urological Surgeon in Chapel Hill, NC. I had been diagnosed in January with T1 G3 disease and undergone two TURB's (the second one being for "residual tumor"). So, in May, I went to the nice Dr. in Chapel Hill. At this point, I had not had any treatment. The two Dr.s were both concerned for me because of my AGE and because of the fact that I might have to be looking at an RC sometime down the road anyway and so they wanted to be cautious and evaluate me for RC.

THE ONLY REASON THAT I HAVE MY BLADDER TODAY, IS BECAUSE I DID NOT HAVE RECURRANCE
BY THE TIME OF APPOINTMENT WITH THE SURGEON IN MAY. THIS WOULD HAVE BEEN THE DECIDING FACTOR.

There was another fella at Chapel Hill at the same time as me being biopsied for the same reason. Because he had recurrance, he was not given the choice of keeping his bladder.

I hope this helps you somewhat in making your decision.

Please take care and keep talking to us.

Very best regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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