You shouldn't feel hopeless!! What your dad has been diagnosed with is usually highly treatable!! You are being sent for a possible second opinion at one of the best places in the US (IMHO) and is probably the one I would go to for a second opinion if it ever comes to that. Your dad's urologist is WONDERFUL to be on top of the BCG issues and cooperating with a second opinion! He couldn't do more.
You really don't want a radical cystectomy for your dad unless it is absolutely necessary. It is MAJOR surgery and the recovery and training after is not a walk-in-the-park.
It is natural to feel like the end of the world has arrived when faced with a diagnosis of bladder cancer. I know that I was devastated and depressed. That is one reason that I joined the American Bladder Cancer Society's efforts and work so hard on the Forum....to try to tell people like you that it CAN and WILL be OK. To be perfectly honest, I am about to head to my urologist's office for my annual exam...it has been 11 years cancer-free after a diagnosis almost identical to your father's- and I am still very nervous. Stay tuned...results will be posted (hopefully good) later this afternoon!!
:Your father is so fortunate to have you advocating for him. Part of that advocacy is maintaining HOPE.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
1 year 5 months ago - 1 year 5 months ago#57409by Alan
You are doing what you can and also have approached some very good places being Stanford and someone that has been at MD Anderson. It also sounds like they are on top the TB/antibiotics issues. A second opinion is good for fresh eyes and can confirm what needs to be done or open other avenues. Perhaps the worst part is waiting trough the process. It is one day at a time and it is 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.
So I met with my father’s urologist. He said he was confident that he removed the tumor and went into the deep layers of the bladder and didn’t see invasion but will do a blue light cystoscopy and biopsy the muscle tissue.
He also said he would check with the infection disease specialist to see if BCG is effective since my dad tested positive for TB on a skin test and was taking antibiotics but said if he didn’t think it would work- mitomycin would be used.
He also referred us to Dr Shah at Stanford who was faculty at MD Anderson for a second opinion.
If the BCG isn’t for my dad- I have not heard great things about mitomycin. But when I asked the doctor if my dad should consider an RC he said that was an extreme approach.
I don’t want to lose my dad- I am so terrified at this point, I feel helpless and hopeless.