Confused and perplexed

2 years 7 months ago #55861 by winthrop
Confused and perplexed was created by winthrop
Hello,
I was just diagnosed with stage 3 Bladder Cancer.

I am confused by why it took almost a year to get the diagnosis.

I originally went to my Urologist close to a year ago complaining of frequent urination. I had known I had an enlarged prostate from my GP but thought it was time to get a more specialized opinion.
They took urine samples and that came out "negative". I filled out a questionaire about how much my symptoms "bothered me"( getting up several times nightly). I stated it was inconvenient and undesireable but something I could live with for the time being. ( I was not feeling any pain and there was no blood in urine)
I came back in 3 months for another follow up check-up. Another urine sample was taken and came out negative.I came back for another check-up 3 months later and had another sample taken with the same results.
A few weeks ago I saw a tiny amount of blood in my urine, went back to the Urologist and they confirmed, after more extensive testing,there were malignant cells in the blood.

I had a CT scan 2 days ago. Today, on my 62nd birthday I had a Cystoscopy. My Urologist saw MASSIVE growths in my bladder. I am going to see another specialist for a 2nd opinion about treatment options.

I did not see blood in my urine until 3 weeks ago. Since that is the #1 sign of bladder cancer why did I not see blood until recently? ANY IDEAS OR COMMENTS WOULD BE GREATLY APPRECIATED.

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2 years 7 months ago #55862 by sara.anne
Replied by sara.anne on topic Confused and perplexed
Sorry to hear of your diagnosis.

Blood in the urine is only one of many possible signs of bladder cancer. I was diagnosed with high grade bladder cancer and I have NEVER had any signs of urinary blood. This is not uncommon.

Sara Anne

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

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2 years 7 months ago #55863 by winthrop
Replied by winthrop on topic Confused and perplexed
Thank you Sarah Anne for sharing your experience!
I was reading that was the best part of this type of cancer (blood that is visually seen so early detection) but apparently that is not the whole picture.
I find myself wanting to blame the doctor(s) but in my heart I really don't want to do that. I would want to help someone with the same symptoms as me with frequent urination and let them know there is a possibility this is not entirely caused by enlarged prostate. This cystoscopy takes 45 minutes , the CT scan takes about 25 minutes.

Any other info. or insight greatly appreciated!

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