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Confused--Cysto found Papillary Tumors but Cyto Negative...

11 years 6 days ago #11522 by beglin99
Please do not let me scare you... but my experience with mytomicin was not pleasant. After the 4th instillation of a scheduled 6 I was really suffering with burning and frequent urination. I took a 5th, but the uro and I decided to stop there. Three months later I tried a maintenance regimen of 3 instillations, but could not get past 2 of them. THE STUFF CAN REALLY IRRITATE. I have had two cystos since then and have been clean for 15 months now. Had a cysto last week with no visible tumors, but uro did take a biopsy of a "red" area.. will get results two days from now. ;D

Good luck... Bill

Retired USAF Col, father of 4, grandfather of 9, greatgrandfather of one.. Enjoying life to the max...

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11 years 6 days ago #11507 by Sandra
Good Morning David: Good news and thank goodness there is Mitomycin for those who cannot tolerate BCG. There are several folks on this site who have had the mitomycin in lieu of BCG and seem to have done excellent.

David, sit back and enjoy your holidays with family and friends - then you can start anew on Jan 11, 2008.

Here's wishing you the very best for 2008. Take care,

"Grandmothers are just antique little girls...."

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11 years 1 week ago #11490 by wsilberstein
Dear David,
Wishing you good results. And, as a hopeful word of encouragement, I had the Mitomycin treatment instead of BCG and did quite well with it.

TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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11 years 1 week ago #11484 by ddoyle
Thanks for the encouragement, Rosemary. Actually, the inflammation is still there (the doc said when he filled the bladder with water during the TURBT -- on Friday 11/30 -- there was a lot of bleeding) but the pain had completely gone away -- untill the TURBT & TURP, that is :P

Anyway, bring on the Mitomycin ;)

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11 years 1 week ago #11482 by Rosemary

I'm just so glad that you are over with that terrible bladder inflammation.
NONINVASIVE...NONINVASIVE...NONINVASIVE...Three times...this is a good thing...

Let's just hope that the Mitomycin is the ticket for you.

Also, "long way from having to consider cystectomy", well, that sounds really promising.

Keep your chin up, Bud. I consider the path report to be really good news.

Your Bud,

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

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11 years 1 week ago #11481 by ddoyle
Here are the results of my path report from the TURBT performed on 11/16/07:

Left Lateral Wall Biopsy: Papillary transiitional cell carcinoma, grade 2 of 3, noninvasive

Left Trigone Biopsy: Papillary Transitional cell carcinoma, grade 2 of 3, noninvasive

Urinary Bladder neck, Tumor Biopsy: Papillary Transitional Cell Carcinoma, grade 2 of 3, with Focal Flat or In-Situ Architecture. No evidence of invasion

I start 1 or 6 Mitomycin-C instillations on Jan 11.

My uro assures us that we are quote "a long way from having to consider cystecomy", however I am somewhat concerned that these tumors came back so quickly --- approx 6 months after the TURBT which I had back on 4/13/07 -- and of course that the CIS came back also, following 6 BCG instillations. As some of you may recall, I had a very severe reaction to the BCG and the URO doc had said earlier that it was the most severe he'd ever seen in over 20 years of practice and furthermore that he strongly felt there was a correllation between the severity of side effects and the effectiveness of the treatment. Now of course I have my doubts...

I am still new at this since everything just started about 9 months ago so I'm completely open to advice and information sharing.

Not a great thing to be having to cope with at Christmas time, but as I said earlier, cautiously optomistic.

DDoyle in Houston

I guess the term is "cautious optomism and watchful waiting..."

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