Newly diagnosed Turbd upcoming

5 months 2 weeks ago #60812 by WiscoNewbie
Replied by WiscoNewbie on topic Newly diagnosed Turbd upcoming
Update...cytology says "Negative for High Grade Urethelial Carcinoma". Sure hope thats accurate!

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5 months 2 weeks ago #60811 by WiscoNewbie
Replied by WiscoNewbie on topic Newly diagnosed Turbd upcoming
Thank you SO much for the nice reply! Whew it sure is a LOT to deal with mentally right from the start! 
I tried to find the urine cytology in my online chart access and dont see it in there yet. Initial urine wasnt taken for cytology so they did another at my scope yesterday. 
I would love to know what to look for on that report?

Thank you again SO much for the kind words. Nice not to be alone!

Determined to kick this.

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5 months 2 weeks ago #60810 by sara.anne
Replied by sara.anne on topic Newly diagnosed Turbd upcoming
Welcome to a place you didn't want to be!  A LOT of us have been where you are.,

First (and this is the hard part) try not to freak out.  If your urologist is correct, and she has had a lot of experience with cases such as yours, you will have the best bladder cancer diagnosis there is.  If she is NOT correct, and it is high grade, that is probably the second best diagnosis and it can be very successfully treated.  However, you will not have a definitive diagnosis until the tumor is removed and examined by a pathologist.

If the tumor is indeed low grade non-invasive, or even high grade non-invasive there is very little chance of it spreading to other organs.    But bladder cancer does have a nasty little habit of returning, which is why the every-three-month exams are part of the standard of care for non-invasive bladder cancer.  It sounds as if your urologist is "right on" with treatment recommendations at this point.

When to get a second opinion?  Any time you have a complicated or unusual diagnosis, any time you feel that your current urologist is NOT following current standard of care practices, any time that you feel really uncomfortable with your treatment plan.  When I was diagnosed I checked around with other doctors and found that everything was being done that should be (as is your current situation).  My urologist told me that if it ever came to the point where he felt I would need radical cystectomy (bladder removal) he would INSIST that I get a second opinion.  Fortunately, it has never come to that.

Just a quick word about urine cytology....it would be expected that it might show malignant cells at this time.

In summary, you appear to have a highly treatable case.  You are very fortunate to have been referred to a urologist immediately;  often in the case of women bleeding is ignored.  Be sure to ask your urologist any questions you have, such as the one about any additional tests.  And there are many of us here on the Forum who  have been there/done that who can share experiences with you.

Best of luck and please keep us informed as to how you are doing!!

Sara Anne

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

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5 months 2 weeks ago #60809 by WiscoNewbie
Newly diagnosed Turbd upcoming was created by WiscoNewbie
Hi all, Im a newly diagnosed Female, 53, Nonsmoker. 
Friday night, began bleeding heavily. No pain. Saturday morning, went to ER. At ER, passed large clots. No pain. 
CT revealed 0.8cm mass.
No other abnormalities in organs on CT.

Yesterday I was brought in immediately for the Cystoscopy which confirmed a single Papillary tumor on posterior left side bladder. Urologist said that based on her experience, it appears to be surface, non invasive, likely low grade and that she would be extremely surprised if that wasnt the case, although anything can happen.
Guess is Papillary, Low Grade, Non Invasive Transitionial cell. It looks like a little bit of coral or something. Growing up.

She said that I will have the removal and biopsy Thursday, and a chemo wash of bladder for 1 or 2 hours.

IF the pathology is as she suspects, I would be scoped every three months for recurrance.

I have not seen my urine cytology yet.  Obviously I am afraid. 

1.Has anyone experienced their Dr being completely wrong about their assumptions from scope to TURBD?  

2. Also...when is the right time to ask for 2nd opinion if one seems necessary?

3. I worry about possible further organ involvement...should I be asking for more tests?

Thanks in advance!! 

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