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4 years 8 months ago #48272 by WUN
I will take the 10%. Lucky indeed. As to weight loss, that was me just not eating. Tumor wasn't anywhere near 20 pounds. Dr. Chemo at one point suggested depression.
That story is a long one. Seems like all I do now is eat. I want the 20 lbs back. Told I look gaunt.

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4 years 8 months ago #48268 by fighterm
Somebody has to be in the remaining 10% and this time it's you. But if you waited with rc you might not have been so lucky. About weight loss. It can be 20 pounds of tumor plus the bladder that are gone. With age the weight usually goes up, if you new lighter weight is stable, I would be happy in this circumstance.

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 8 months ago #48267 by WUN
Given all that, we were all surprised that the post-op pathologies came back clean. I was told that there was a 90% probability that at very least it would have been found having invaded the lymph system etc. I very seldom am on the right side of that sort of equation. New beginnings I guess. Dr. Chemo said they can't know what they don't know. Or something to that effect.

As far as the cath deal goes, I have no idea how long that will be necessary. I'm sure it was discussed as we're a million other things. The biggest concern from all the medical folks was weight loss. So I'm taking megace to try to bring my weight back up. I think that perhaps eating so much might be contributing to the mucus issue. I'm looking for 20 pounds or so. First things first I guess.

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4 years 8 months ago #48265 by fighterm
Your report is not confusing, it's very clear that the tumor was high grade and invasive and that was life threatening, especially lymph-vascular invasion. So the bladder removal was absolutely necessary. For how long will you need to do the cath?

66yo female, 1992-Non-Hodg. lymphoma(NHL) high grade, chemo, rads, 2007 NHL, low grade, rads, 2013 NHL low grade, stage 4, chemo till Jan 2015; 2014 TCC, first Turb 01/29/2015.

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4 years 8 months ago #48264 by WUN
Hi yourself, the type is kind of confusing, allow me to quote from the diagnosis. BLADDER TUMOR, high grade papillary urothelial carcinoma extensively infiltrating muscularis propria.... BLADDER DEEP BIOPSY, pretty much the same with probable lymph-vascular invasion. It was into the muscle wall pretty deep I'm told. As far as the neo bladder is concerned, the incontinence is of course an issue. Also, I'm not sure what to expect from one day to the next as far as mucus. I think it may be related to diet and to a greater extent to some laxative products I take. Plus I have to cath this thing. Some times once, usually twice but occasionally three times a day. I suspect all that is to be expected but it requires a lot of attention. Again, I'm just getting used to this thing and hoping for some consistency at some point.

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4 years 8 months ago #48263 by sara.anne
You really didn't have any option, other than RC. This is, of course not something that anyone would choose to do if they didn't have to. But there are lots of people on this forum who have had their bladder removed and are leading very fulfilling and good lives. I am sure that you will hear from some of them when they reply to your post. It does take a while to get used to "the new normal."

And yes, Mike was a wonderful person and a wonderful resource. He was truly and inspiration. He lived every day of his life to the fullest, including SCUBA diving.

Really wishing you the best of luck as you adapt....and you will. Life is precious.

Sara Anne

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