4 months 2 weeks ago - 4 months 2 weeks ago#57291by Alan
Just a quick "pile on" from the great comments here. I have always leaned toward a surgeon/doc that wants to do the least invasive procedure if possible. As said from Irish Duke you can always pull bigger guns out later if need be. THAT is good medicine.
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.
Irish Duke, you are smart. I wish more people were willing to question their physicians when something does not "seem right." Your new docs are "right on." BCG is not usually effective for initial low grade bladder cancer and is not used for low grade unless it returns multiple times. You want to save it for when you might need it!!
I once had a doc who basically scheduled me for surgery the minute I walked into his clinic (not for bladder cancer.) I just did not feel comfortable with the rush nor the recommendation so I cancelled the rotator cuff procedure and sought another opinion elsewhere. The second doctor said that surgery was a last resort and recommended another type of treatment and physical therapy. He said that we could always do surgery if the less drastic treatment didn't work. It worked great!!
We need to trust our own feelings sometimes and seek alternate opinions.
Good for you!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Thank you for info. My pathology report is back, I have high grade aggressive bladder tumors that went through lining but they do not think went through muscle but are not definite. I am scheduled for bladder removal, hysterectomy, lymph node removal, hopefully did not spread, outside bladder.
I have to put in a plug for getting to a cancer center if you can. My urologist was abysmal at messaging (offhandedly told me I had cancer as I lay on the table with my pants around my ankles just after the cystoscopy) and left it to me to tell my wife in the middle of his waiting room; and more importantly - was about to over-treat me. After TURBT (March 2019) to remove a single low-grade NMI papillary carcinoma, he wanted to schedule me for BCG once I healed. I asked about the global shortage, the guidance from BCAN, and why surveillance wasn’t sufficient, and he shrugged: “It’s up to you.”
Yes, it was. I got myself to Johns Hopkins and found a urologist who is engaged in research for BC. He offered that he would never recommend BCG in my low-risk case, because several other options are unavailable if the patient has had BCG in the past two years. “Why disarm myself from those options, in case a tumor returns after your BCG?” Surveillance begins in June.
Bonus: I’m not responsible for taking an unnecessary dose of BCG from someone with a high-grade tumor. Please get to a cancer center if you can.