Local Urologist Cautions Mitomycin C

15 years 8 months ago #18710 by Rosemary
Replied by Rosemary on topic Local Urologist Cautions Mitomycin C
I just wanted to bump this thread up to the front. There has been some discussion in another thread on this particular issue....

Ro :silly:

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

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16 years 11 months ago #5224 by Kathleen_T
Replied by Kathleen_T on topic Local Urologist Cautions Mitomycin C
Yes it was. And thanks for clarifying, as I think I was confused about the nomenclature. Grade 1; no infiltration of underlying submucosa or muscle layers.

I love your sister’s story. Hope I can do as well.

— Kathleen

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16 years 11 months ago #5219 by wendy
Replied by wendy on topic Local Urologist Cautions Mitomycin C
Hi Kat,

Was your tumor Ta, and grade 1? The grade is just as important as the stage. If it was grade 1 I wouldn't think you'd actually need intravesical chemo, just a TUR. My sister goes to Sloan, had a Ta, G1 and a recur the first year, neither time did she get intravesical treatments. The recurs stopped coming and she's been clean for about 7 years now.

All the best,
Wendy

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16 years 11 months ago #5214 by Kathleen_T
Replied by Kathleen_T on topic Local Urologist Cautions Mitomycin C
I guess I (at 66) would be one of those “older women” and perhaps my urologist is not being casually cautious. At some point you have to trust someone to do the right thing. I know that the specimen he sent to the pathogist included some muscle tissue.

I will call him on Monday to report how my post-resection / post-catheter / post antibiotic period is going. Then we shall see. I will ask him if he would consider instilling Mitomycin after a recurrence, assuming there is one (as we expect).

This is so complicated. I feel grateful for my Ta report, but still do not feel safe.

I am astonished at how uninformed my gynecologists and G.P. were. When I saw my G.P. yesterday, I said it was amazing that neither he nor my gyn (nor my gyn/oncologist, who had been following me since my endometrial cancer six years ago) thought to refer me to a urologist when I talked about blood. Instead they said I should have a colonoscopy (I did; nary a polyp).

I have had four rounds of antibiotics for UTIs in the past three years. It was only when the last of these showed no improvement — and when my blood work showed a drop in kidney function — that anyone suggested a urologist. He took one peek and found the tumor, which he described as being pretty long-growing, with a well-developed blood supply. (Turns out there were two of them.) Yikes. We are all lucky to be alive! [smiley=rolleyes.gif]

Ah, well. Have a nice weekend, everyone.

— Kathleen

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16 years 11 months ago #5209 by Rosemary
Replied by Rosemary on topic Local Urologist Cautions Mitomycin C
Wendy,

Thanks.  I appreciate your weighing in on this issue.  

This is another point that my Uro made to me and was a reason that he gave for needing good cause to perform a secondary TUR.  He stated that TUR's can be tough on the bladder.

Best regards,
Rosemary

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

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16 years 11 months ago #5205 by wendy
Replied by wendy on topic Local Urologist Cautions Mitomycin C
Hi Gang,

I'd heard from a European expert at a conference a few years ago that one of his patients died during a post TUR Mito instillation because there had been a perforation. After that, I'd read the warnings that nobody should instill Mitomycin if there's the slightest suspicion of a tear. I've read many times that older women post-menopause, have very thin bladders. Also people who've undergone many TURs get thinning from the procedures themselves.

I haven't heard of Mitomycin being banned from use as a post-TUR tx, though. But...in Europe the drug Epirubicin is more commonly used as an intravesical chemo, and in the US it's Mitomycin. Probably because it has the most information on use for blc, perhaps because it's cheap, and the common agreement is that all the intravescial chemos are more or less equal when it comes to efficacy.

I'm not a big fan of the new guidelines advising a dose of chemo for low risk bladder cancer, all the drugs used have potential side effects and none of them are claimed to have a benefit extending more than two years from diagnosis. In other words they only work for a short time, delaying recurrence and not stopping progression. I'm not sold. But the uro-onc field knows that cost efficiency is a huge issue and delaying a TUR can save a whole lot of money if you apply that to the millions of TURs being done each year.

Wendy

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