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Unsure of what to do now

11 years 9 months ago #4000 by deeasm
shelly as in pm messages go with how you feel if it doesnt seem right to you xx

been with my partner for 7 years ,i have a 10 year old son .

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11 years 9 months ago #3992 by Shelley_F
Thank you Wendy and Pat for your replies. I feel more justified in going for a second opinion now.
Shelley x

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11 years 9 months ago #3991 by Patricia
I had CIS and it was picked up by the CT scan with dye......the uro did not see it with his cystoscope. Pat

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11 years 9 months ago #3975 by wendy
The first rule is: when hematuria is present, bladder cancer must be ruled out. A cystoscopy is the gold standard, but even the gold standard has room for improvement. There's a new technique that uses flourescent dye and blue light and has been shown to diagnose 30% more cancer. That is a scary thought. Especially CIS, which is the more dangerous type of bladder cancer and is often invisible to the naked eye, is more accurately detected with blue light cysto.

If I were you I would ask for cytology and maybe a FISH urine marker tests. Any sign of funny cells and get another cysto, preferable a blue light, fluorescent one. There is info about Hexvix here:
http://blcwebcafe.org/hexvix.asp It is available in Europe, in trials in the U.S.

I can sense you are unsure and to me that's a sign to follow your instincts and be very sure this bleeding is not due to bladder cancer.

I know many women and young people, both smokers and non-smokers, high risk and not, who experienced delayed diagnoses because they didn't fit the profile. Blood in the urine is the most common symptom, so whatever is causing it should be determined.

Take care,
Wendy

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11 years 9 months ago #3973 by Shelley_F
Hello, i'm Shelley, aged 47 and live in the UK
Yesterday I attended the hematuria clinic at my local hospital for an ultrasound scan, plain abdominal x-ray and flexible cystoscopy, after experiencing three episodes of bleeding at the end of urinating in december 2006 and continuous microscopic hematuria since then (I started dipsticking my own urine at home after the bleeding)
The outcome is - no stones and nothing visible on the cystoscopy, so i've been told to go home and forget it, great....but, what if that's my one chance of an early warning of bladder cancer and I miss it?
Now i'm wondering what to do, should I forget it or should I seek out some private advice (as opposed to NHS), should I try to get my urine tested for cancer cells as there have been no urine tests?

I'm sorry to ask so many questions but my mind has gone blank and I don't know if i'm being unreasonable and wimpish or if I should be more assertive about getting a satisfactory answer.
Thank you so much for this website, I have learned a huge amount since december!

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