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Cause to celebrate, I think.....

12 years 11 months ago #9912 by Sandra
Hi All: Since posting a few days ago, I have experienced more rashes (had some right after TURBT with Mitomycin), and now lumps in my legs. Also nausea seems to follow me everywhere. I called my Oncologist again today and he was concerned, ordered a UA and blood work to be done tomorrow. Also, said my FISH came back positive and he wanted me to have a CT Scan as early as Walter Reed could do it. I was lucky, got an appt for this Sunday afternoon at 6 p.m. All of my cytology and FISH to date have been negative even when I had all the tumors. So he wasn't particularily concerned about the cytology but when the FISH also came back positive he thought we should error on the cautious side and go ahead with the CT Scan. I can say I have a general feeling of unwellness (is that a word?) and hope that it is nothing more than the change of weather blahs!

Thanks DDoyle for your answer sounds like we are experiencing some of the same Bladder "iritation" - my last dose of BCG was May 2007, had a Cysto in July and it did not show any "iritation" but in October, there it was. This does lend to the idea that the effects of BCG and Mitomycin last quite a while after treatments. Good luck on Friday, I will be thinking of you.

Take care all BC Friends,
Sandra

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

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12 years 11 months ago #9904 by ddoyle
Sandra,
I read your account about the positive cytology report and finding of dysplasia with great interest. I had 6 BCG treatments from May-mid June and experienced very severe inflammation of the the bladder -- a LOT of blood in the urine. The Uro called my condition "bullous edema", meaning puffy, swollen blisters in the bladder. He was concerned enough to perform a TURB biopsy on Sep 7 and what he found was dysplasia (irregular cells which may or not be pre-cancerous). Although he did not say that the dysplasia was caused by BCG, I think it would be safe to say that it most likely was related. Two cytlology reports prior to the biopsy were both negative, which makes me wonder about the accuracy of these tests, given your experiences. Following the TURB my inflammation has improved quite a lot over the past 8 weeks. I don't see any visible (of course there may well be microscopic blood there) blood in my urine lately. I will have a cystoscopy next Friday and that will give us a better idea of what's happening. I have not been able to learn a lot about the dysplasia, but apparently it's a "watchful waiting" type of situation.

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12 years 11 months ago #9784 by Sandra
Thanks for your replies Rosie and Warren, it helps to know that others experience this as well. Yes my bladder is severely iritated according to Oncologist. To the point that he says I probably will not be able to take BCG treatments again (also have severe reations to it as well) and he will consider "other" instillations if I have a reoccurance. The urine sample was taken before the Cystoscopy. So I think I will celebrate until I get the call with the results from the FISH and then if it's all clear, I can celebrate until January and who knows, maybe beyond!

Thanks again, take care all,
Sandra

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

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12 years 11 months ago #9770 by Rosie
Sandy, I had a positive urine cytology for high grade for the first time in seven years last December. I went to my primary care physicians office to get another urine cytology test. A Lab Corp tech has offices there. She gave me the info on what can affect urine cytology for a false positive or innacuarcy. When my urine cytology came back it was negative. I believe it was because the prior urine cytology was taken at the time of a cystocopy which adversly affected the correct reading. Read this link of information I posted from the info the Lab Corp tech gave me about what can affect a urine cytology test. Rosie http://blcforum.com/smf/index.php/topic,598.0.html

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12 years 11 months ago #9763 by wsilberstein

The Oncologist also told me that my Urine Cytology came back "A typical Urothelial Carcinoma-High Grade" - which was the first time - all other cytology and FISH have came back negative, even when I had the first 4 tumors TA G3.... I asked about the positive cytology as it seems odd it would now be positive (high grade) when for all my other tumors (7 total) it has been negative.

Dear Sandy,
You might ask to see the cytology report. Last year I had a TURB due to symptoms from an inflamed urethral stricture. I was also told that the cytology at the TURB showed cancer, but in reality, it showed a pattern of atypical cell which were typical of papillary carcinoma. There weren't actually any cancer cells seen in the cytology. My bladder was highly inflamed at the time, and I suspect that was the cause. At the subsequent TURB with biopsies nothing was found, and my repeat cytologies have been negative.

-Warren
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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12 years 11 months ago #9756 by Sandra
I wrote earlier that I was scheduled for a TURBT on Oct 22 due to new tumor found during poke and peak. This is not news to me because for two weeks prior I periodically had blood in my urine and the hospital confirmed it before my poke and peak. Everything went okay for the TURBT and mitomycin instillation except the nausea (could not keep even liquid down for two days) and a rash that lasted about a week. The Oncologist also told me that my Urine Cytology came back "A typical Urothelial Carcinoma-High Grade" - which was the first time - all other cytology and FISH have came back negative, even when I had the first 4 tumors TA G3.

Today my Oncologist called to say that there was no cancer found in the specimen that they removed and that it was bladder dysplasia and probably caused by either BCG or Mitomycin. I asked about the positive cytology as it seems odd it would now be positive (high grade) when for all my other tumors (7 total) it has been negative. He has not received the FISH report as yet which is of course study of the DNA - but this has always previously been negative as well.

So has anyone else experienced this situation, I want to celebrate not having any reoccurances for 10 month but something doesn't seem quite right. I will have another CT SCAN in January 2008 (14 months after first one) when I have next poke and peek.

Take Care all,
Sandy




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

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