-
Carcinoma In Situ diagnosis
Hi all, I’m a new member. My biopsy from my turbt came back with a Carcinoma in Situ diagnosis. My doctor said it was superficial and we caught it early. As far as he could see I had one red spot. He is going to start the BCG treatment next week for 6 weeks then let the bladder calm down and do another cystoscopy to see if it was effective.
I’m trying to learn as much as I can about CIS and BCG. Oddly enough when I check out CIS many sites list it as “abnormal Cells” instead of a cancer. But it looks like it is high risk if it does decide to invade the muscle. So I went from thinking this might not be too bad to thinking this is high risk! I wasn’t sure if I should get a second opinion or just go with the planned treatment. It appears this is the standard treatment for CIS. I have also read different views on BCG treatment. Some appear to tolerate it very well with no problems and others have problems with it. I’m also concerned that BCG does not cure CIS all the time. Hopefully there is a back up plan if BCG doesn’t work. I would be interested to hear any comments or experiences other folks have had with CIS or BCG. Thanks! -
74 Replies
-
Update: I had cystoscopy and cytology test end of Feb 2025 and both were negative. I’m now 4 years clear of any signs of bladder cancer. Now I will be tested yearly. Good luck going through this journey!
-
Update: Just completed CT Urogram. Cystoscopy and cytology. Fortunately all were negative. I’m now 3.5 years clear of any signs of cancer. Next tests will be in February 2025 and if they are negative then the Dr said I can go to yearly check ups!! Hoping everyone fighting this cancer has success! Clyde
-
When discussing BCG as a treatment option see if your DR uses the SWOG protocol. This method appears to have allot of success in treating CIS. So far it has worked for me. Good Luck!
-
I’m still not positive that they will respect my wishes for an RC over BCG therapy anyway.
-
Sloan Kettering has a great reputation.
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. Good point. My employer seems to have an arrangement with Sloan Kettering. I’m going to try and transfer all of my records over to them. I’ll still keep my urologist here at home for checkups etc., but I think for any surgeries going forward I should travel to them. I am of course tempted to delay a RC and try BCG but since they told me TaG1 was low risk and less than a small percent chance of progression but I still progressed anyway I guess I don’t feel lucky.
It might be time to get a second opinion. A university/teaching hospital setting that sees a lot of BC. All I can add is CIS often does respond to BCG although not perfect. One of those hospital could have a novel or improved approach to things. If nothing else, maybe try the induction phase of BCG and evaluate. Obviously, you don’t want to wait a long time for decisions being high grade.
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.
So I just got the news about my progression to a CIS diagnosis after 4 years of supposedly low risk TaG1. I was hoping that someone could tell me if I should just get a Radical Cystectomy instead of bothering with the BCG treatment which I hear ends up with progression and an RC at some point anyway. I want decades of survival. Not just 5 years.
Congrats
Diagnosed 4/2024, T1 NO, MO, Invasive, High Grade BCG 6/28/24
That is good news!!
I am now almost 15 years from CIS diagnosis, BCG, etc. Still getting CT-Urogram every five years and annual cystoscopy.
Keep up the good work!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Congrats.
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.
Had a Cystoscopy and cytology test last week and both were negative. Now I’m 3 years cancer free!! I’m going on 6 month surveillance cystoscopies. He is also doing a CT urogram in 6 months. So far so good! I hope everyone has good fortune on their journey.
I am happy for you! I am guessing it is the minority that able to get through the complete the regimen. Congratulations and thanks, giving all hope.
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.
Finished BCG instillation #30 today. That completes the SWOG protocol for me. Started in October of 2020, First induction series didn’t work, fortunately my doctor suggested another induction series and so far my tests have all been clear. I see him in Feb. 2024 and if that is good he’ll probably just put me on surveillance. I was lucky to be able to tolerate the BCG at full strength with just some urgency and burning for a day. It’s been quite the journey since I first posted on this message link. I’m very thankful for all the support and advice I have received in this forum. Good luck to everyone dealing with this.
Always love to read about success! And it helps all that visit the forum!
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.
