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BCG and waiting

3 months 4 days ago #58811 by GREGIL
Thank You so much for your replies. I am located on the western edge of IL, 4 hours from Chicago. I looked up NCI locations for Iowa and noticed The University of Iowa in Iowa City. This is much closer and is where I had my aneurysm surgery. My present urologist had mentioned previously that he may recommend me to Iowa City. My wife is going to call today and see if they can start that process. Hopefully, this will speed thing up. Thank You again Greg

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3 months 5 days ago #58806 by Shacky73
I was in same/similar boat in July. I read advice hear to go to a NCI designated Cancer Center and decided not to because it would be a lot of travel.

I finally did take the advice and went to Sloan Kettering in November. They told me they had BCG for high risk patients like me. My local never got it in plus their were errors I never would have discovered but for going to Sloan.

So I highly recommend you take that advice and seek second opinion at a NCI Center. See attached. And all the best on you journey!

T1 Grade 3 with CIS
Attachments:

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3 months 5 days ago #58804 by sara.anne
Hello, Greg! Sorry to hear your diagnosis but am glad that you are here since you may find answers to some of your questions.

First, the procedure you had is called a TURB, short for “transurethral resection of the bladder” where the urologist removes as much of the obvious tumor as he can and sends samples to the pathology lab for a complete diagnosis. Based on the treatment recommendations
my guess would be that you have high grade but still localized ( not spread beyond the bladder lining or into the muscle) transitional cell carcinoma (the most common type.).

The good news is that this is highly treatable with BCG. Yes, there was a severe shortage about a year ago, but most urologists seem to be able to get it now. If your current doctor cannot, this would be a good time for you to seek a second opinion and/or treatment somewhere else with a urologist who has access to a supply of BCG. The usual wait is about a month after the TURB so that the bladder heals from the surgery.



BCG has side effects but the treatment is very doable and is a life saver for patients with non-invasive high grade bladder cancer

Please feel free to ask any questions you have. We are not doctors here but we are people like you who knew NOTHING about bladders when we were diagnosed.

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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3 months 5 days ago #58803 by GREGIL
Hello all. As you may have guessed, my name is Greg and I live in IL. I am 65 yo, and retired. I have never been diagnosed with any type of cancer before. I have no clue what to expect. My brother was diagnosed with bladder cancer 4 years ago. He now wears a urostomy bag, and will for the rest of his life. He has also had throat cancer, and lung cancer. So far he has beaten all of these to a degree.

My bladder cancer was accidentally discovered because of an MRI (I think) I had due to an aneurysm. The aneurysm was successfully repaired and all is well in that regard.

I have done a little reading on this forum, but I must admit, I don't understand most of the terminology. I was diagnosed in October of 2019. I don't know the name of the procedure, but he went into my bladder, through the urethra and removed what he could. My Dr. recommended 6 immunotherapy treatments, over a period of 6 weeks, with the drug BCG. As we all know, there is a global shortage of this drug, and so far, I don't see that changing anytime soon. We have been in contact with my Dr. office and have been told, when he knows something, he will tell us. I was told that with early detection and treatment, bladder cancer has a very high cure rate. My question is, How long do I wait before seeking an alternative treatment? Possibly another Dr. altogether. Is 3 months a long time? 6 months? 1 year? I don't have a clue. Thanks for any help you can give me. Greg

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