BLADDER CIS CONCERN

1 month 1 day ago #60987 by sara.anne
Replied by sara.anne on topic BLADDER CIS CONCERN
Please remember Alan's advice that we are NOT doctors here.  However, since CIS is always high grade (spreading rapidly), my guess is just like Alan's that IF it had been CIS you would not still be here!  It would not just stay static for 7 years.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 month 1 day ago #60986 by fhern0001
Replied by fhern0001 on topic BLADDER CIS CONCERN
Thank you for your response.  They thought it was prostate issues but then that was ruled out.  If I go again they would probably go ahead and do all the procedures again which may cost me alot of money like before and im out of a job right now.  This is why I wanted to know how likely this could be bladder CIS.  Im approaching 8 years now with these symptoms.  If this was CIS would the symptoms have gotton worse throughout the years? Would this have progressed by now?  So far its remained the same no worse, however no better.   I have learned to deal with these symptoms throughout the years,however, i get emotionally distressed thinking "what if" this could be CIS.  

Thank you in advance,

Frank

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1 month 1 day ago #60985 by sara.anne
Replied by sara.anne on topic BLADDER CIS CONCERN
As someone who had CIS, I will chime in here.  The only symptom I had was repeated "urinary tract infections" over and over.  My PC doc would phone in an antibiotic prescription and that was it.  Finally a gyn nurse practitioner told me that if you ever have three or more UTI's in a year you go to a urologist.  Next one I had I went to a urologist and...no bacteria in the urine!!   Turned out to be CIS.  After almost three years of BCG I have been clear ever since.

As for advice, you may NOT have bladder cancer, but you do have "something" that is causing your symptoms.  Have you any idea if certain foods could be causing your issues?  Did either of the urologists have anything to offer you to help?  In your situation I would probably try once  more with a doctor (urologist?) to see if anything can be found.

Sara Anne

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

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1 month 1 day ago - 1 month 1 day ago #60984 by Alan
Replied by Alan on topic BLADDER CIS CONCERN
1st welcome,

While none of us are doctors, it appears that all the tests you have taken are following protocol. The only other one that is often done is a CT scan but, there are still concerns on doing these often as per radiation questions. CIS is usually not found on these kinds of tests as they are flat. A TURB (transurethral resection of the bladder) is simply a day surgery to take a biopsy could be done. With negative results 7 years ago, I would guess that is not necessary as it is an invasive procedure. With 7 years passed if this was CIS you likely would be in trouble or passed from this life.

In regards to your frequency and urgency. I would find a 3rd opinion and get some help. There is no reason to suffer at this.

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 day ago #60983 by fhern0001
BLADDER CIS CONCERN was created by fhern0001
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.

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