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Perforated bladder & delayed treatment

1 year 1 month ago #54253 by Jack R
Kaileia

You are at a GREAT place, at Stanford. One of the select Centers of Excellence for bladder cancer. I expect that the docs will come up with a plan that fits your needs.

Too many of us, me included, start with our local urologist, nice people but with general rather than specific knowledge and expertise about bladder cancer. Sooner or later, if we have special issues, we get referred out to a major center such as Stanford.

Do keep reminding the docs that you have other issues, and that you need a full-person approach. You will do great there.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 1 month ago #54252 by kaileia16
Hi Jack,
Thank You so much for all the useful information. I have CVID (common variable immune deficiency), something I was born with but I went undiagnosed until about 18 months ago. I was fortunate that a pulmonologist whom couldn't figure out why every time I got a simple cold, I'd be hospitalized for weeks at a time. When I was finally ambulanced to UC DAVIS in Sacramento, it was there that the physicians immediately took the approach of "We need to think outside of the box" as they had explained to me, once a patient has 1 diagnosis, they usually stop looking for other illnesses. Come to find our, not only did they diagnose the CVID, but also ILD, (interstitial lung disease) and during the ultrasound & scans they found the bladder mass & a blockage in my heart which was stented on September 11th so I do understand their concern for treatment but I'm feeling blessed about the Mytomyacin treatment. I'm not exactly sure why they chose not to do the BIG but before responding here, I reread my Dr's notes and it says, "I explained to Patricia that BIG is not an option" but I will speak to her at My next appointment exactly what the reason is, just for my own records. I'm anxious to reread the links above & share them with Uro-oncologist at Stanford. I'd be happy to be a part of a clinical trial. I appreciate all the knowledge you've shared with me as it's very useful for me. I was especially happy to read about the % of spreading. I'm still in the learning phase of all this and appreciate your sharing such good information.
Kaileia

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1 year 1 month ago #54251 by Jack R
Kaileia,

Mitomycin effects vary, from none to considerable local discomfort in the bladder and when urinating, as has been reported here. I had it in combination with BCG and it eased the side effects somewhat.

Below is a link to an article, from a reliable author (O'Donnell) about T1 treatment. While the odds of recurrence are high, as you noted, the odds of NOT progressing to invasive can run from 52% to 67%. You are in a select group, with immune issues, so treatment and outcome are going to be hard to project. Five months is not necessarily "a long time" - If you are free of tumors now, you might be back to a T0 status - with a notation of prior T1.

The optimal management of T1 high-grade bladder cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792452/

While not directly addressing immune deficient issues, the following Clinical Trial report on treating AIDS patients with one of the newer drugs for a range of cancers.

Cancer and AIDS Keytruda clinical trial
https://www.cancer.gov/types/metastatic-cancer/research/hiv-pembrolizumab-trial

You may want to research open clinical trials that address your specific needs. Talk to your doctor about the above if they seem to fit your situation. Hopefully you find a treatment plan that addresses your specific situation and is effective.

Best,
Jack

What's with this Bleeding ? 6/2015
DX: HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
T0 CIS comes back.
BC clear as of 5/17 !
RCC found in my one (only) kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo , round 3
Begin year 4 with cis T0

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1 year 1 month ago #54250 by kaileia16
Hi, This is my 1st day here and I have a few questions. I was diagnosed in June with High Grade and Aggressive Eurothelia Bladder Cancer, T1. During my 1st TURBT to remove a large tumor (6 cm), my bladder perforated. It was repaired & the surgery was stopped) I went in for a 2nd TURBT on August 25th and pathology of the remainder of the tumor came back the same. I was advised to start chemo as soon as my bladder healed but due to being immune deficient was not able to do so. I've had 4 or 5 IVIG infusions trying to build up my immunity but in the meantime, my Dr felt that I may have a really difficult time with Chemo & if I would get sick, recovery would be difficult so he decided that going in every 3 months to remove new tumors & scraping the bladder is what he could offer me with the understanding that with my cancer the chance of reoccurance would be 85% or greater. I was upset about not having any treatment so chose to get a 2nd opinion at another institute. As long as things go well & there are no new tumors, my new Dr has agreed to start Mytomyacin on December 14th which I'm so grateful that she has given me HOPE. Has anyone else begun actual treatment so far out from diagnosis & if so, how did you do? I'm also trying to hear others experience and side affects from Mytomyacin. Any information is greatly appreciated.
Patricia

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