Once again I find myself concurring with Alan!! IF it is non-invasive stage 1, I don't quite understand the recommendation for cystectomy at this time. Since we are not doctors, I sincerely recommend a second opinion at a place that is VERY familiar with bladder cancer. My urologist has told me that if it ever comes time where he recommends cystectomy, he would INSIST that I get a second opinion. This is a very important decision and needs all the information you can collect.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forgive me if my timeline and facts are fuzzy. If i remember the facts you have had a 2nd TURB and originally the surgeon thought it might be invasive to the muscle after the first. So now the 2nd TURB clears you from that as being only stage 1? High grade? If that is the case you are very similar to a good number of us that have taken BCG and are fortunate to retain the bladder.
While none of us are doctors I do question the 50% survival rate quoted. Most studies I have read and the 2 URO's that I have treated me concur that BCG works roughly anywhere from 65-80% of the time. I don't have the citation handy however, the death rate from what I remember is about 1/6 or 1/5 (and that may be within 5 years) so things are not as dire as what you may have been told. If the BCG does not work then yes, a cystectomy is the process.
Complicating things is the current shortage of BCG. You simply need a real frank discussion or perhaps it is time for a second opinion for peace of mind. Preferably a major center for bladder cancer or a university hospital.
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.
I had my second TURBT done on February 21st and on the 25th I went to my surgeon and discussed the pathology report and it was confirmed that I have Stage 1 High Grade Bladder Cancer with CIS and he told me that he got the rest of my cancerous tumor out and I said great some I am cancer free right now and he said I did not say that you have CIS which is flat like cancer cells throughout on the wall of your bladder.
He is really thinks I should go with the Neo-Bladder as he says it's my best survival rate, as says that doing the BCG treatments along with the maintence treatments he says it is less then 50% that it will work.
To me they both have pros and cons, however I am leaning towards the BCG treatments as I was told that if it does not work orif the cancer comes back I can still go with the Neo-Bladder although he says my survival rate will be less which I understand the wording but not 100% what does he mean?
So tomorrow (March 18th, 2019 at 1:00pm EST) I have an appointment with my surgeon to hopefully give him my decision and to be quite honest I am scared and I think both options are not that super great to do. Bear in mind I leave alone and have NO family and my two best friends live 3,000 miles away and my two other friends do not really live near by also.
So matter what I decide I will be going through it alone which will make it VERY hard tp do.