Will just put in my 2 pennyworth- I was diagnosed with high grade papillary in 2006, had TURB with mytomycin, followed by instillations of mytomycin weekly for 6 weeks. Stayed clear until 2012, when a cystoscopy showed a suspicious area which turned out to be CIS, treated with BCG, and at the moment I am still all clear. Wh I am well aware that at some time down the line I may have to opt for a radical cystectomy, but whilst the proven treatments available are doing the trick, I would not consider cystectomy at this stage.Everyone is affected differently by BCG, but as a general rule, the side effects are relatively shortlived, and doable by most people- It is a therapy which has risks, but very small compared to its benefits.
I'm very surprised the doctor brought up radical cystectomy already. I also had multiple high-grade, non-invasive papillary tumors removed (hopefully) and am doing BCG. Unless your cancer keeps coming back over and over, I would think removal of the bladder to be a very extreme option for a non-invasive cancer. Only you and your doctors can make the choice, but BCG seems to be a good one. I would definitely look for another opinion before allowing someone to remove my bladder.
12/2015 - TURBT, non-invasive T1, mixed grade, 3 tumors
1/2016 - Begin BCG weekly for 6 weeks
3 years 4 months ago - 3 years 4 months ago#50471by Alan
Welcome to our "club" but, all are sorry to have another "member". I was in your place almost 8 years ago. Papillary, high grade, non invasive tumor. Your URO was good to give you as many options as possible, although you have correctly deduced observation is not a good one with high grade.
For me, fighting made sense with BCG to give it a chance, It worked and I am 8 years out. There was a thought that my surgeons skill may have caught it all but, as he said, the danger of re-seeding was to great to not do BCG. Many do give it a second chance with interfuron should that a first induction series fail. After that he said a cystectomy was the next step. Let's hope the BCG works for you and that is the end of it.
Two last bits of info. There appear to possibly be some new agents, one called MCNA that may hit the market in the next year. It is similar to BCG as it is immunotherapy but, not as toxic in side effects. Second, there are many protocols for BCG. My URO had me do 6 weeks (once a week instillations), 6 off with another scope, then 6 more and that was it. Many suggest a maintenance schedule after the first six spread out over several years. A, few including a well respected Dr. Herr of John Hopkins does just the 6. Get that first 6 done and see where you stand!
Keep posting as you have questions. I believe you are on you way to beating this!
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.
Diagnosed in Dec with two high-grade noninvasive papillary carcinoma tumors. Received intravesical chemo immediately after surgery. Had repeat TURBT yesterday (with chemo) to confirm staging and now awaiting pathology. The recent TURBT revealed no residual or new cancer. Urologist suggesting I consider three options: radical cystectomy, BCG, or observation. Given the high-grade, the observation option would seem far too risky. The RC would increase survivability but would come with quality of life costs. The BCG would require long-term application with increasingly severe side-effects, and perhaps only defer the RC. My feeling is to do the initial 6-week BCG treatment, see the results at the 3-month follow-up cystoscopy, and go from there. Thoughts?
Dec 15 - DX Ta HG, 1.5cm Pap, Focal CIS; Treatment: SWOG Protocol (BCGx27); Feb 19 - Ta HG recurrence and CIS/Ta HG in right kidney/ureter; underwent nephroureterectomy; next cysto in May