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How effectiveness is BCG if High Grade CIS returns?

2 months 1 week ago #58444 by TrpShtr
NIMBC. High Grade: After discovery was trtd w/BCG 6 doses. then wait for it to rtn. Dr said 95% chance it will rtn.
Rtn'd in 9 mo's. Another BCG and nothing else. Again rtn'd in silx mo. Then used chemo into bldr. Stayed away for l3 mo's. Said it would have to come out. Ref'd to Vanderbilt Nashville TN to The "Best" Dr. Be sure to ask your Doc to treat with a follow-up of something - after a few weeks. Not just do nothing. All research and recommendations call for a follow-up with more BCG or Chemo or something. Not just wait for it to come back - especially if he knows it has a 95% chance. Also be sure to ask and demand that Doc uses the chemical called "Cys-view" and a blue lite to better see what's inside. Cancers show up very, very much better. Supposed to help Dr to see all and thus REMOVE ALL. With the normal look (white light only) he will surely miss some and it is 100% chance to return. If Dr does not do above, I would do a Donald Trump #. You're Fired. Good luck.
Chuck
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2 months 1 week ago #58405 by Alan
Guys, I am sympathetic to your situations. As always the waiting is the hard part and let's hope that the spots are just irritation via your future path reports.

IF there is a recurrence I have read about interfuron in conjunction with BCG or a number of other agents. I am guessing your doc's are up speed on them but, in case they are here is a good article from one of MD Anderson's best: https://www.bcan.org/wp-content/uploads/2019/05/BCG-Shortage-Dr-Kamat-GU15-Editorial.pdf

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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2 months 1 week ago #58404 by Jacko
Hi Regor

Thanks for the reply; we should keep in touch. I see the Uro on Tuesday next week and so will report after that. If the tissue pathology comes back negative then that's good but where are the cancer cells coming from? Or is it a second false positive? He doesn't think so. All very interesting. Look out for a post from me next week.

CIS diagnosed May 18
2 TURBS
6 BCGs 2018
3 Maintenance BCGs 2019

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2 months 1 week ago #58402 by Regor

Jacko wrote: Hi all,
I was diagnosed with High Grade CIS in June 2018; had 2 TURBS followed six weeks later by 6 weekly BCG treatments in Sept/Oct. The cystoscopy/cytology in Dec 2018 showed all was clear and so I had 3 maintenance BCGs in Feb 2019. In May 2019 the cystoscopy/cytology was all negative; the suspicious area was pink. My next inspection in Aug had showed 'negative' for tissue samples but one 'suspicious' urine sample with the suspect area looking red so we have just completed the process on 30 Sept. This time the cytology shows 'positive' for cancer cells in one of the 3 samples, the tissue pathology still to come. The suspicious area was back to red. My Uro thinks that the cancer has returned....to be confirmed by the pathology.

My question is; do any Forum members have any experience of the effectiveness of BCG following the return of CIS?


I don't have an answer, but I am following your progress, as my situations seems somewhat close to yours.
Tumor found
TURBT performed (Jan 19)
6 weekly BCG performed (Apr 2019)
Cystography performed - all clear (May 19)
Cystography performed (Aug 19) - Red area noticed, but Urologist decided to watch vs TURBT
3 weekly Maintenance BCG performed - Sept 19
Cystography - End of October 2019

TURBT Jan 2019; Diag: CIS
Induction BCG (Mar 19) /Maint BCG (Aug 19)
TURBT Nov 2019; Diag: CIS
Repeat Induction BCG starts Dec 2019

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2 months 2 weeks ago #58393 by Jacko
Hi all,
I was diagnosed with High Grade CIS in June 2018; had 2 TURBS followed six weeks later by 6 weekly BCG treatments in Sept/Oct. The cystoscopy/cytology in Dec 2018 showed all was clear and so I had 3 maintenance BCGs in Feb 2019. In May 2019 the cystoscopy/cytology was all negative; the suspicious area was pink. My next inspection in Aug had showed 'negative' for tissue samples but one 'suspicious' urine sample with the suspect area looking red so we have just completed the process on 30 Sept. This time the cytology shows 'positive' for cancer cells in one of the 3 samples, the tissue pathology still to come. The suspicious area was back to red. My Uro thinks that the cancer has returned....to be confirmed by the pathology. He took bladder and prostate lining samples this time. (My PSA is in normal range but this type of cancer can attach to the prostrate lining.)

My Uro's assessment of the effectiveness of BCG in a case of returning case of CIS is that it is only 20% effective. If we try it is 15 weeks from now, with standard waiting times, before we can go back in and see if I am in the 20% of lucky ones. He is concerned that might be too long and has mentioned the radical solution.

My question is; do any Forum members have any experience of the effectiveness of BCG following the return of CIS?

CIS diagnosed May 18
2 TURBS
6 BCGs 2018
3 Maintenance BCGs 2019

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