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Question Re BCG shortage

6 months 1 week ago #59245 by iXanadu
I received my first surgery in February 2019. I received my second muscle biopsy in March 2019. The diagnosis is that I am high-grade, minimally muscle invasive. That was followed by six weeks of BCG. Three months later I receive three rounds of BCG. After that the shortage resulted in not receiving additional BCG treatments.

I am on a regimen where I receive a cystoscopy every three months. The last one was inconclusive. Unless something shows up in my system allergy, or cytology, there is no plan for additional BCG treatments. My next one is in April.

I find that I live pretty easy until about two weeks prior to the
next cystoscopy at which time I get anxious about the next one.

For me, it’s an ongoing wait and see.

Given the circumstances, I think the best that we can do is learn to be emotionally/mentally healthy, and try to live and eat healthy, and carry-on with our lives.

1/1/2019 Happy New Year: What is that red tint in the toilet
1/2/2019 Primary DR - might be first signs of BC
1/9/2019 CT Scan, Urine Culture, PSA test - ALL CLEAR
1/13/2019 Cystoscopy show what looks like Papillary
2/1/2019 TURBT
2/5/2019 Clots and blood clog urethra go to ER
2/7/2019 DX: HG...

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7 months 4 weeks ago #58964 by sara.anne
Sometimes a patient doesn't even make it as far as your father with BCG due to side effects. He has had the initial induction and then even more. It would have been nice if he could have had more but he certainly has had enough to have an effect. Just be sure that he knows that he needs to keep his appointments for checkups!!

He is being seen at one of the best places in the country and they do know what they 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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7 months 4 weeks ago - 7 months 4 weeks ago #58963 by Alan
If he has not had a recurrence the odds get better each passing month it won't. No one knows EXACTLY how many installations are the optimal amount as everyone is different. There are many protocols. For some reason my URO did 6, with 6 weeks off then another 6 and that was it. I am still here 12 years later. I have no idea on his rational but, he interned or did his residency under Dr. Lamm and did this differently. Part of his reasoning was every scope, every treatment involves some kind of risk no matter how small. Tell you Dad not to miss follow ups and go on and live life.

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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7 months 4 weeks ago #58962 by Neelloo2626
Today my father went to his second 3 month cystoscopy for T1 high grade bladder cancer.
He is being treated at Stanford. This second cystoscopy was clear! He’ has 8 rounds of BCG after the TURBT and then an additional three sounds of BCG

Dr. Said that due to the BCG shortage he would not be administering additional 3 cycles of BCG. He believes that the BCG did its job and no need for additional rounds. Question is, since his cancer was high grade and now that they are not administering due to shortage- does that increase his risk for the return of his cancer? I am really worried! Any advice on this would be appreciated!

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