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NEWLY DIAGNOSED AND SCARED
Hi everyone, I’m new to this site and new to bladder cancer. After 5 months of urinating blood I was diagnosed 3 weeks ago with non invasive high grade papillary urothelial carcinoma in situ [involving Von Brunn’s nests?]. Good news it was caught early. Bad news BCG is on National back order and I am petrified. The doctor is “still waiting” for BCG and will proceed with MITOMYCIN INSTILLATION if the BCG is not available in the next couple of weeks. I’m so scared it is going to spread and get worse while I “wait” . Since it is localized to the bladder lining, do you think I’m OK waiting and did anyone else have to wait for BCG? Thank you for listening.
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5 Replies
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There was a publication of the study (2021) by MD Andersons about the timing of intravesical BCG and its affects on the effective of the BCG treatment. The conclusion is that the delay does not affect efficacy and side effects. BCG treatment received adequate BCG at a median (range) of 26 (6-188) days from TURBT. Below is the link to the study. So, certain delay in receiving the BCG after TURNT should be okay according to MD Andersons study.
https://pubmed.ncbi.nlm.nih.gov/33783950/
I do not comprehend the pathology result. It sounds like there were high grade papillary tumor(T1HG) and carcinoma in-situ (CIS). At any rate, your NMIBC is considered as high risk.
Before BCG, intravesical chemotherapy was used to treat high risk non muscle invasive bladder cancer (NMIBC))
Back in 2000, the SWOG clinical trial led by Dr. Lamm showed BCG induction ( 6 weekly) and maintenance 3 years reduced recurrence and progression much better than intravesical chemotherapy for high-risk NMIBC.. Intravesical chemotherapy such as MMC can reduce recurrence but not progression as well as BCG.
https://pubmed.ncbi.nlm.nih.gov/10737480/
Incidentally, according to the study (1995) by MD Andersons, von Brunn’s nests itself is not independent risk factor so it should not affect the treatment decision.
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OMG you are so kind and I am so appreciative. I just made an appt. with MD Anderson Orlando. They can get me in on the 26th and they also have me on a waiting list to come earlier if a spot opens. Of course this is a second opinion appointment BUT at least they have access to all of my medical records since I’m already in their group. God is good.
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You are doing fine! No question is meaningless or dumb. We all have been there. MD Anderson is an excellent choice. I live in New Braunfels, and they are my backup (150 miles away). My URO was very well versed in BC so I never got there. I do have 2 friends that have gone there and doing well. Your doctor should not be offended in the least as second opinions often simply confirm things. Brunn’s nest is rare and needs special attention. Most can self-refer to MD Anderson, so do it now!
Ask away as you go.
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.
Thank you so much, I will call MD ANDERSON which is close to me. I don’t want to anger my doctor but waiting just isn’t an option and causing so much undue stress. I am elderly so I hope I responded right and you got my THANKYOU.
Welcome Nana 2211,
All of that respond are volunteers and not doctors, so keep that in mind. Most are those that “have been there and done that”.
Not to alarm you. Brunn’s nest is not a “garden variety” bladder cancer and very serious. Start the BCG as soon as you can. That said, you really need to get to a center of excellence. Cleveland Clinic, Sloan Kettering, MD Anderson, Northwestern in Chicago, USC etc. These not only serve as “cutting/leading edge” in medicine but, would serve as fresh eyes and be a good second opinion. Also, there are other agents if BCG is still out, and some are better than mitomycin. “Gemcitabine + Docetaxel protocol was developed by University of Iowa team under Dr. Michael O’Donnell” as I am quoting our poster Joea’s research.
As you said, catching things early is a big key. Treatable and beatable.
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.Sign In to reply.