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10 years recurrent free, now 2 relapses in 6 months

3 months 2 weeks ago #56108 by Rockyiss
Sorry I am tired it is spelled Mitomycin . Rocky

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3 months 2 weeks ago #56107 by Rockyiss
Hi Sibelsue , I have been off this site for awhile but got back on and saw your question so maybe my story will help ease you mind about your father. I first had bleeding in Jan 2005 I was told I had a kidney stone, fast forward to Jan 2006 and more bleeding . Had a c-scan that didn't show anything, but then a cysto showed five tumors all ta grade 2. I had them taken out and a dose of mitoministin installed. Then I made a decision to go to John Hopkins . We decided to do wait and watch. Went in every 3 months, than six months than tried a year and it had come back. Took it out again,
more mitoministin installed and back to three months. The grade had dropped to 1. It has come back several times I forget how many but they just catch it early and take it out.
In 2015 it came back they took it out but could not install the mito because of the intensive cutting and scraping in my bladder. Fast forward three months and it is back again. This time they were able to use the mito. My last two checkups have been 6 months and clear. I go at the end of the month and if I am clear we will try for a year again. So I guess for me I have dealt with it for 13 years. I fully trust my Dr at John Hopkins who has been great. My bladder is in good shape it just gets the cooties ( bc) in it once in awhile . It is what it is. I paint houses ,have horses and backpack so I am very active. I hope you can get alittle piece of mind because this is doable. Rocky

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8 months 1 week ago #55398 by Alan
Jack,

Thanks, I figured someone on this board would know.

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 1 week ago #55395 by Jack R
Sibelsue,

The term, "exophytic growing tumor mass," describes tumor(s) that grow into a hollow area of an organ, such as the bladder, rather than growing into the tissue of the organ (endophytic).

Transitional cell carcinoma may be papillary (exophytic) or non-papillary (endophytic or flat) and invasive or non-invasive. Exophytic masses grow into the lumen (hollow center) of this bladder.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis

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8 months 1 week ago #55394 by Alan
"what does exophytic growing tumor mass mean?" I googled your question and I am more confused afterwards especially not having a clue what that is/means? I am sure that is one for your docs.

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 1 week ago #55392 by sibelsue
Thank you Alan. I have got another question : what does exophytic growing tumor mass mean? does it always have to be a malignant tumor?

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