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Not Diagnosed yet, blood in urine

3 years 5 months ago #48995 by sara.anne
Yup. When they try to do a "little" biopsy without anesthesia, you feel it!! I once had a red spot that he thought was most likely BCG cystitis, but he wanted to check. I said OK. OUCH!

Hopefully yours will be just irritation from the previous stuff...

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 5 months ago #48994 by FLAllison
So, I had my Cystoscopy this am. No new tumors but he said there was a red round area somewhat near where they had removed my original tumor. So he said he was going to biopsy it. Wow, that hurt! Then he said the 1st sample was too small so he went in again for a second sample. It hurt even more! No numbing gel or anything. I am having a lot of pain now and am weeing every 10 minutes or so. My bladder is one angry puppy. I get to wait a week and then call them for results.

52 year old Female. Marginal Zone Lymphoma (Found during routine pathology after thyroidectomy) 2004

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3 years 5 months ago #48981 by sara.anne
They would only do a TURB if there is a sign of the cancer during the cystoscopy. Since a TURB is really surgery, and done under general anesthesia, it is only done if considered necessary to remove a tumor.

With luck your cysto will be clear!!!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 years 5 months ago #48980 by FLAllison
Another update. Finished my Mitomycin 6 week treatments on May 27th. Supposed to have a follow up cystoscopy on Wed. I am concerned that they are not doing a follow up turbt instead. Am I concerned for nothing?

52 year old Female. Marginal Zone Lymphoma (Found during routine pathology after thyroidectomy) 2004

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3 years 8 months ago #48648 by FLAllison
Just an update. After my diagnosis I was told to try and get healthcare thru the new obamacare system. I had insurance march 1 and what a nightmare! I had to get a new PCP , make an appt 3 weeks later and get a referral for my Mytomycin treatments. I am still waiting for approval from United Healthcare. So, 6 weeks after my treatments were supposed to start I get to sit and wait and wait. My urologist said they may now do another cystoscopy before the treatments. But, of course, I would need another prior authorization from United Healthcare which tales 3-15 days to approve. (and considering I am on day 8 waiting from the time my pcp sent in the authorization for the Mytomycin, I won't hold my breath for the next one to be approved). I had a better and quicker experience self paying.
Sorry for the rant but I am just exhausted.

52 year old Female. Marginal Zone Lymphoma (Found during routine pathology after thyroidectomy) 2004

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3 years 9 months ago #48318 by Sdca1
FLAllison, I'm about to start with BCG too. My uro oncologist is doing a second TURBT next Wednesday first though. From what he said and from what I've read, prognosis with high grade can be improved with a 2nd TURBT before starting the BCG.

Fighterm, I'm very happy for you results! Sounds like the best possible pathology for having a bladder tumor - Ta low grade are the "nuisance" BC - can come back frequently but very rarely ever pose any type of serious threat of progression.

As for me, I went from TaHG to T1 :(. I read that it's a good idea to get 2nd opinions on pathology and when I talked to my urologist he said he worked with a top pathologist he would send to for a second opinion. Well she found "early, focal" cells in the lamina propria - so I guess it's very early/minimal T1 but distressing none the less.

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