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Dx single Stage 2b, high grade bladder tumor

3 years 4 days ago #54382 by eddiek

In March 2015 after 3 28-day cycles of Gem-Cis I was relaxing in the ocean in Danang when something aquatic bumped into my upper back. I guess I hadn't recovered adequately from chemo, but a bump that didn't break the skin developed like a boil or furuncle. 5 days later I had surgery to drain it and the pus culture showed Vancomycin-resistant MRSA. Fortunately they had the only antibiotic that could treat it (IV Sulperazone, available. 15 days in isolation with IV antibiotics. Returned to US 6 weeks later after therapy due to wound closure - couldn't turn my neck due flap technique. Cystoscopy May 2015 in Florida was clear. In August after My GP urinalysis showed blood in had TURBT. Path reported adenocarcinoma. Sent slides to John's Hopkins for 2d opinion. Urologist told me to study surgical options for radical cystoprostarectomy. Contacted Moffitt Cancer Center in Tampa and had another TURBT to assess surgical options - repair bladder or total replacement. Returned to Moffitt to schedule surgery when report from Johns Hopkins finally arrived and said, " Not adenocarcinoma, but nephrogenic adenoma. And PET scan was clear. Followup through 2016 with quarterly scopes. In Sep 2017, scope showed another growth but turned out benign and subsequent PET was clean. So 2 1/2 years after initial diagnosis, a T3 aggressive tumorwas removed and AFTER intravessical (6) and systemic (3 easy 28-day cycles) I still have a reduced capacity bladder. If cancer returns its coming out.

Bob H

Edward J. Kinsella
American Bladder Cancer Society
Board of Directors - Secretary/Clerk

& Caregiver

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4 years 6 months ago #51175 by Nicke
Thanks for the update!

You did mention earlier that your cancer was not TCC. Do you know what kind it was?


12-12 Diagnosis
13-1 Turb TAG1
13-5 Turb Ta low grade, multiple
13-10 Turb TaG2, multiple
13-11 Mitomycin 8 weeks + 6 month
15-01 Turb

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4 years 6 months ago - 4 years 6 months ago #51171 by raharris3
After having to extend my stay in Vietnam until May, I have just returned from US Urologist at FL Hosp (#21 nationally in Uro)after cyctoscopy and am happy to report that the immediate surgery, 6 intravessical Tx with Doxyrubicin and Mitomycin, followed by 3 rounds of 4-week cycle Gem-Cis appears to have been successful. My CT in Feb showed no evicewnce of cancer and Cystoscopy in May confirms this. Repeat cystoscopy in 6 months. My bladder capacity has been diminished to 150-200 ml by treatment, but everything still works. Also, my initial diagnosis was changed to T3 from T2.

Bob H

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5 years 3 months ago #49109 by raharris3
My sons are both in medical jobs and everything is being funneled through them and onto their expert friends to ensure we're moving in the right direction. Other than not immediately removing bladder, so far so good and it is not actually TCC elsewhere as I thought - I'm waiting on a clear English definition so I can understand what it is.

Bob H

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5 years 3 months ago #49108 by sara.anne
Bob, so sorry that you are joining us!!

It is difficult to comment on your diagnosis and treatment, since things are done so differently in different countries. Exactly what was your "partial cystectomy?" That is rarely done in the US, and then for certain rare types of bladder cancer, not TCC, since TCC puts the entire bladder lining at risk.

I would echo Alan's comments about radiation. IF at all possible, I would avoid it. (Please do remember that we are not physicians, so are speaking from what we have heard, not a medical training background.) Once radiation is used, it is very difficult for any other treatments to be used. I would strongly suggest aa trip to Bankgok or somewhere that has sophisticated physicians with really great training.

If you have read much of this Forum, you will notice that our motto is "get a second opinion!" It is too important to be sure that you are headed down the right path.

Sara Anne

Best of luck to you

Sara Anne

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

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5 years 3 months ago - 5 years 3 months ago #49107 by Alan

Welcome, glad you found us but also sorry you have to be here! .Also, thanks for you service. While I was TaG3, I was and am still prepared to have a cystectomy if the need arises (T2 or more). Most of us would tell you to go ahead and take that bladder out once it hits the muscle (stage 2). Peruse this site for all kinds of information. In rare circumstances a partial is done in trying to preserve it. I know this is not what you want to hear. Also, this is a very tricky cancer with a high rate of coming back. I would definetely get a second opinion, especially with the changes in diagnosis from the original tests(scans and pathology) for peace of mind. I would be asking what else might be changed or read incorrectly. Also, radiation is normally not done as adjoining tissues are sometimes damaged precluding some types of diversions.

Everyone's cases are all slightly different and none of us are doctors. However, being aggressive on this is usually the best course of action. Being overseas complicates things. Perhaps someone will have experience for a hospital in SE Asia.

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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