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Bladder Cancer

1 year 2 months ago #54107 by sara.anne
Good for you, Susan!! Yes...it is important to learn that we must be our own advocates. "A little knowledge is a dangerous thing :pinch: "

Just because your current doc formerly was at Moffitt, I wouldn't rule that place out. It has a good reputation.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 2 months ago #54105 by speterson
Yes there is a Medical School here in town also Moffit Cancer Center. I live in Tampa, Florida. Thus far your information has been absolutely refreshing. I am able to make my own decisions if I am given all the information. Unfortunately doctors just expect you to follow them blindly which has not always worked out for me.

Suggestions for a 2nd opinion would be awesome. My doctor was formerly on staff at Moffit so I wonder if that is the cause for his recommendation. I am definitely going to have further discussion with him about why he believes BCG is called for at this time. This is my 1st and hopefully only cancer diagnosis. There isn't even a long line of family members who have had cancer.

Susan

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1 year 2 months ago #54103 by sara.anne
I would really want to know why he would suggest BCG if your path report is as reported. BCG is used with low grade when it comes back several times as a last resort before bladder removal, but not usually at the first occurrence. It is not as effective with low grade tumors. Because it is not without side effects, and these tend to be cumulative, it is generally "saved" until really needed. I would certainly want to discuss with him his reasoning for prescribing it at this stage.

This might be a good time to seek a second opinion. Is there a medical school near you? If you let us know your geographical location someone may have some good suggestions for a second opinion for you.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 2 months ago #54102 by speterson
Thought I did join. Must have missed something.

The reason for the question about typical post surgical happenings is because the Doctor has recommended Induction BCG once a week for six weeks and I question the necessity of going through all of that for non-invasive, low grade diagnosis. More than once in my life I have been over treated or treated by someone who should not have done the treating because I have insurance or because I was uninformed and didn't question them. I for one do not wish to undergo unnecessary treatment or procedures.

I did get a copy of the path report which is where I took most of the diagnosis from. After Low grade it did go on to say focal muscularis propria present, uninvolved with tumor. Something else on there of significance?

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1 year 2 months ago #54101 by sara.anne
Welcome to the club you didn't ask to join! And congratulations on your diagnosis....as far as bladder cancer goes it is as good as it can get.

The recommended course that you described is exactly what should be done. Since bladder cancer has a nasty little habit of returning, you need to be scrupulous about keeping those cystoscopy appointments so that IF it returns it will be found early and taken care of. Other treatments, such as BCG, are not as effective in low grade bladder cancer as they are in high grade, and should be saved until really needed.

You should ask for a copy of the path report for your records.

Best of luck to you

Sara Anne

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

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1 year 2 months ago #54100 by speterson
I received my official diagnosis of Bladder Cancer 8/31/17 by way of Cystourethroscopy and visual of tumor. Had already had a CT for Tumor Markers which was negative. Had urinalysis the results of which were blood no bacteria in urine. I am 61 yr old female and smoker for 40 years. Well attempting to be a former smoker. Transurethral Resection of Bladder Tumor performed 9/13/17. Follow up visit with urologist 9/28/17. Results of TUR is Non-Invasive Papillary Urothelial Carcinoma, Low Grade.

What is the typical course of action now other than check up every 3 months for 2 years and then every 6 months for years 3-5?

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