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Would Appreciate Guidance

1 year 7 months ago #53285 by Hannah01
Sorry to hear, is the tumor outside bladder?. Urologist are helpful is seeing it might be a complete different story with thorough investigation.

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1 year 7 months ago - 1 year 7 months ago #53270 by Sean T
I have no advice but I am glad to hear that they don't think you have bladder cancer. Hopefully it stays that way. Mine wasn't diagnosed for maybe eight months because the doc (my former doc, by the way) didn't think blood in urine for a 58 year old smoker male was worth investigating beyond a simple urine test that came back negative. Guess what? The test was wrong.

08/16/16 - TURBT - 1 tumor, T1HG, 7.5 cm x 7.5 cm x 1.8 cm, non-invasive papillary.
BCG treatments (15 rounds total - last March, 2018). As of latest cysto, Sept. 12, 2018 - cancer free!

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1 year 7 months ago #53268 by Flamenco.
My bladder cancer was mis- diagnosed initially as a blood clot ( by ecograph), but eventually confirmed by the same means. Although cystoscopy is the standard means of examining the inside of the bladder, if I were in your position I would ask for an ecograph to be done, as it is a relatively inexpensive and non invasive procedure and will show up any reasonably sized solid tumour( it would not show a flat tumour).If that is clear I would then wait 3 months and probably go for another cystoscopy with a urologist experienced in bladder cancer. But I would persevere with your medical team to find out what caused the bleeding.

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1 year 7 months ago #53258 by Alan
Momof2,

You have been given the 2 "gold standard" checks for bladder cancer, CT scan with contrast and a cystoscopy. First, none of us are doctors so any advice is worth whatever someone thinks! Personally, I would suggest your URO is probabbly correct that the mass seen on the scan was a clot. At the same time my peace of mind would do one of two more things. Ask to be re-checked with cystoscope and cytology (urine sample that can point to abnormal cells) in 3 months to verify OR a second opinion. Chances are good this is the end of it but, I have also seen too many others ( a small number) tell a different story.

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 year 7 months ago #53257 by Cynthia
Sorry you are having such a scare, I would think they could tell if the tumor was outside the bladder. I always tell people to go with your instincts if you feel like you need more answers get a second opinion. A University center will often times offer a Urologist who handles a high volume of bladder cancer. Good luck.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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1 year 7 months ago #53256 by Momof2
Hello everyone. I am new to the forum. I am a 41 year old female who had 2 episodes (within 24 hours of each other) of gross hematuria in March of 2017. My only symptom was blood in the urine. I immediately went to the ER where I was given antibiotics for a UTI (even though I had no symptoms)while a urinalysis and urine culture was sent out to confirm.

I got a call from my primary doctor that same week saying my culture was "inconclusive" and to return for another culture (which I did) . By this time I had been on antibiotics for 4 days.... when my culture came back it was negative for infection but my doctor said " it was probably an infection that cleared up". I have had UTIs before and I have had blood in my urine from a UTI before but it has always been a VERY obvious UTI (burning, frequency). So this time it just didn't "feel like a UTI" so I asked for a urology referral.
Before I was seen by a Urologist he wanted a CT Scan with contrast of the abdomen and pelvis. The CT showed a 1.6 cm mass in my bladder. Of course my heart dropped when they called to tell me this. He then scheduled me for a cystoscopy which I had today.
Now today the urologist tells me after performing the cystoscopy that he can't find ANYTHING in my bladder. It's all clear and it all looks good.

I was relieved to hear this but what gives???? Has anyone heard of this happening before? I asked him "then what was it the CT scan picked up?" . He said it was maybe a clot from an infection. That the hematuria could of been because of a non-symptomatic UTI that was cleared by the antibiotics and the mass could have been a clot I passed.

I don't want to seem paranoid about this but could it be the mass was outside the bladder? Could they be missing something that is in my pelvis?

He basically told me I had nothing to worry about....

Any thoughts? Advice? Words of wisdom?

Thank you if you read my novel.

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