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BCG or Cystectomy?
Hello, 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?
12/15 – Diagnosed Ta HG, 1.5cm Pap, Focal CIS
3/16 – Began BCG following NCCN and SWOG guidelines
2/19 – Ta HG recurrence and CIS/Ta HG in right kidney/ureter
2/19 – Nephroureterectomy to remove right kidney/ureter
9/19 – BCGx33 completed
2/20 – Invasive HG urothelial pT2 in prostate stroma9 Replies-
Mike,
I didn’t have CIS although the rest of your story is similar to mine. It is good that your Doc is conservative. For my $$$ MD Anderson would be a quick step. I know in many situations you can self refer. Anyway, good luck and thanks for your past service.
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.
Thanks Sara Anne,
Excellent point…the Mitomycin was a one-time treatment after both the 1st and 2nd TURBTs. I note you’ve had success with BCG treatment for CIS which gives me hope. I’m resolved to fight this, pursue the BCG treatment, and avoid the RC as long as feasible. Appreciate your comments and support very much.
Regards,
– Mike
12/15 – Diagnosed Ta HG, 1.5cm Pap, Focal CIS
3/16 – Began BCG following NCCN and SWOG guidelines
2/19 – Ta HG recurrence and CIS/Ta HG in right kidney/ureter
2/19 – Nephroureterectomy to remove right kidney/ureter
9/19 – BCGx33 completed
2/20 – Invasive HG urothelial pT2 in prostate stroma
Mitomycin was given once following TURB? That is a rather common practice to avoid “seeding” any more cancer during the TURB. It is not usually considered a “treatment” for any type of bladder cancer. Or did you have several weeks of mitomycin following the TURB? Sometimes when BCG is not available this is done. Mitomyin is not usually nearly as effective as BCG.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thanks Alan,
Believe my Uro is concerned that despite intravesical Mitomycin following the first TURBT, the original Ta tumor restaged up as T1, plus CIS is now present after the 2nd TURBT. Since now being diagnosed as T1, CIS (after Mitomycin), he thought the timeframe w/BCG treatment might be too risky, because if it did not work, with CIS the probability of metastasis is too great. Said CIS doesn’t necessarily follow at T1,T2,T3 straight linear progression…but can leap to T4 very rapidly. In any case, sincerely appreciate your comments and support!
12/15 – Diagnosed Ta HG, 1.5cm Pap, Focal CIS
3/16 – Began BCG following NCCN and SWOG guidelines
2/19 – Ta HG recurrence and CIS/Ta HG in right kidney/ureter
2/19 – Nephroureterectomy to remove right kidney/ureter
9/19 – BCGx33 completed
2/20 – Invasive HG urothelial pT2 in prostate stroma
Mike,
While BAMC is well respected I almost question why the doc wants an RC without trying BCG. Has he handled a number of bladder cancers? I live in New Braunfels so I am a little familiar with all the places you have mentioned. Being so close to MD Anderson I would certainly look toward a second opinion there. I have friends that have used Dr. Kamat and I think a Dr. Grossman and Denney still practice there and all are highly rated. Ironically, Dr. Donald Lamm (now in Phoenix) pioneered the usage of BCG at the UT Health Center.
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.
Hello Friends,
Just an update. Met with military Uro today at BAMC to discuss pathology rpt and treatment options. Path report revealed T1 and CIS. Uro still recommends RC for best probability of survival, and believes BCG (in my case) is a big gamble. Supports pursuing second opinion, so this is my current approach. From the forum’s “treatment center finder”, will check with CTRC in San Antonio and possibly MD Anderson in Houston…both are under UT Health Science.
Sincerely appreciate everyone’s counsel, advice and wisdom.
Regards,
Mike
12/15 – Diagnosed Ta HG, 1.5cm Pap, Focal CIS
3/16 – Began BCG following NCCN and SWOG guidelines
2/19 – Ta HG recurrence and CIS/Ta HG in right kidney/ureter
2/19 – Nephroureterectomy to remove right kidney/ureter
9/19 – BCGx33 completed
2/20 – Invasive HG urothelial pT2 in prostate stroma
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
Mem,
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.Sign In to reply.
