Hello and welcome to the forum. I am sorry you and your husband are wrestling with such a heavy decision regarding his bladder cancer. Since I have not been through bladder removal, I don't feel that I should offer any opinions but there are others here who have been in a similar situation and I hope some of them will reply to your post.
Cleveland Clinic is one of the leading bladder cancer hospitals and I know the two of you are really torn in light of his recent checkups. I wish you the best as you work through all the details toward making this very important decision.
Again, welcome and I hope you find some useful information here.
Best wishes... Catherine
Forum Moderator Team
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Hello. My husband is Phil, age 67, very healthy, but diagnosed with CIS non-invasive high grade cancer in the bladder lining in Feb 2013. (History: he had his left kidney removed in 2011 due to urothelial transitional cell carcinoma.)
For the bladder cancer, he received several rounds of BCG washes. After the second round, which included interferon, on his next cystoscopy/biopsy in Nov 2013 a small CIS tumor was removed. He continued with 1 more round of bladder washes finishing in January of this year. Since then, he has had 3 more cystoscopies and a total of 18 more biopsies (as of July) and all have been “negative” as well as the CT of other organs being negative!
His urologist referred him to get another opinion on his case from a urology/oncologist at the Cleveland Clinic. We were told flat out that the bladder must be removed for optimum survival rate in spite of the fact that the last 18 biopsies have been negative. It has been very hard for Phil to come to a decision to remove his bladder because of the negative biopsy reports the past 6 months, even though he has been told “the cancer will come back.” Because he had more BCGs than most would have had (20 in total), and we have been told that people have bladders removed and when biopsied thereafter they prove to have no cancer, thus, this has put him/us at a loss to feel confident to undergo this life changing surgery, but feel very much at risk. Has anyone on this forum had a difficult time with knowing when the time is right to remove the bladder? Thank you, Phil's wife, Laurie