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Recently Diagnosed High Grade T1

1 month 2 weeks ago #56999 by arpegio2018
Similar to my case being treated at Georgetown University Hospital (Urology and Lombardi Cancer Center). My BC was diagnosed High Risk Non-invasive CIS in January 2018. I have gone through a first TURBT, then an MRI, then BCG induction. then another TURBT to remove tumor remnants, then BCG maintenance, then another TURBT to remove a small lesion. The latest diagnosis is pT1, that is invasion of lamina propia but not the muscle. I am waiting to know what doctors will recommend next. According to the Consensus Protocol I should continue with BCG maintenance (assuming that one can get BCG given the unexpected shortage). I thought I would share this story as others navigate the uncertainty.

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11 months 2 weeks ago #55291 by sara.anne
BCG is usually only given after the first occurrence when the diagnosis is high grade. Low grade cancer is initially treated by removal of the tumor and frequent cystoscopy exams. BCG is more effective in high grade where the cells are rapidly dividing. Also, while BCG is relatively safe, it is not without side effects which are cumulative with increasing exposure, so it is best used when really needed.

If, however, low grade bladder cancer returns multiple times, BCG is often used.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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11 months 2 weeks ago #55290 by richard_lv
Sara, any idea why my dad didn't have BCG? I didn't ask doctor about it as I know so little. Was it because he had T1G2 (medium grade)?

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11 months 2 weeks ago #55287 by ruliving
Thank you Tim, you mentioned that you had them every 3 months. Do you mind sharing how long you've been doing this? And, have you had to have bcg maintenance .
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11 months 2 weeks ago #55286 by TimODell
Just be sure to follow up have a cystocopy done as your Dr. will request I have had them every 3 months along with biopsy if Dr. seen something suspicious.

2 Time Bladder cancer survivor here to help others.
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11 months 3 weeks ago #55231 by sara.anne
Of course you are being realistic! Many of us have had high grade, done the BCG (and very important, the BCG maintenance) and have not had a recurrence.

Wishing you the best!!

Sara Anne

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