VERY CONCERNED WITH MISSED BLADDER CIS

1 month 1 week ago #60599 by Clyde
Replied by Clyde on topic VERY CONCERNED WITH MISSED BLADDER CIS
Hello Frank:

I also had frequent urination and was being treated for BPH. A cytology test showed atypical cells and a follow up cystoscopy showed a few small lesions that were removed and biopsied. They came back benign. A year later I had a cystoscopy the show two small red areas. They were biopsied and came back as superficial CIS (9/20). Now I'm getting monitored and BCG treatments for the CIS. Once I got the DX I immediately went to an NEC hospital (Moffitt) for a second opinion and treatment. CIS is considered very aggressive but I'm not sure anyone could tell you how fast it will invade the muscle or spread beyond the bladder. But the doctors will treat it aggressively because if it does invade the muscle or gets out of the bladder it's a much more difficult cancer to treat. . One thing you have in your favor is the negative cytology test. From what I read they are very effective for picking up CIS. I've read that a blue light cystoscopy is better for picking up CIS. These are flat tumors and harder to see. There is a ton of information out there on the internet. Good Luck!
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1 month 1 week ago - 1 month 1 week ago #60597 by Alan
Replied by Alan on topic VERY CONCERNED WITH MISSED BLADDER CIS
Welcome FHernandez,

1st, take every post on message boards with an open eye or mind. None of us are doctors....just "those that have been there and done that".

7 years of CIS? Almost impossible that you would be here with us. Some cancers do progress quickly in months and many over a year+ but, I know of none that would manifest itself without death or serious warnings taking 7 years (maybe thyroid cancer is an exception). CIS is always high grade and aggressive. Your situation is unlikely to be cancer.

However, you do need to find the cause of your symptoms. It is probably time for a second opinion to get "fresh" eyes and a new look at data.

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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1 month 1 week ago #60596 by fhernandez
VERY CONCERNED WITH MISSED BLADDER CIS was created by fhernandez
Hello,

I need some advice on bladder cis.  7 years ago at age 44 I went to urologist for symptoms of urinary frequency and urgency every hour with no blood.  Several tests were done cytology, cystoscopy, and prostate exam.  Everything came back negative.  Since my symptoms never went away 2 months later I went to see another Urologist for a 2 opinion.  Fish test was done which came back positive (false positive)- cytology negative- cystocospy negative.  Came back 2 months later this time fish negative -cytology  negative again and cystoscopy negative again.  Never got a diagnosis so I decided to live with these symptoms.  My symptoms have not gotten worse,however, they are still the same after 7 years.  For those who have been diagnosed with cis would you be able to tell me how it was diagnosed and what were your symptoms (did it get worse) - did the cytology come back positive.  If I had cis would it have spread by now with no treatment.  Any information you can give me would be of great help.  I have been worried about this for 7 years and I do not want to go through all the procedures again and $1000 of dollars later to be told I have nothing.  Again thank you all in advance.

Frank

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