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Recurrence of CIS. Treatment options
Hi everybody. I’m back. It’s been about a year. For those of you who don’t know me, I had high grade noninvasive cancer (TaG3) plus CIS in 12/2000. My urologist treated with mitomycin C instead of BCG and I remained cancer-free for 10 years. Unfortunately I had complications of treatment – a urethral stricture that caused me no end of grief and finally required a urethral reconstruction in 2010. I’ve had many follow up cystoscopies and often had areas of redness. Last year when I had an ill defined epididymal mass for which I needed surgery I asked my urologist to biopsy my bladder and I had CIS. Fortunately with my urethra repaired I was able to be treated with BCG. Subsequent to that my urologist continued to see a red area in my bladder, and he agreed with my request that if it persisted for a year we would biopsy it. I got the results tonight – a recurrence of CIS. I have read that delaying cystectomy to preserve the bladder can end up shortening one’s life. I have no great love for my bladder as it has caused me a great deal of pain, and as I haven’t had an erection since the urethral surgery 2 years ago, I’m certainly not concerned about the sexual side effects of a radical cystectomy. My urologist does not think a radical cystectomy is called for and would like to treat me with intravesical valrubicin. I’m tempted, not because I want to keep my bladder, but my partner (I’m a pediatrician) is retiring due to a recurrence of pancreatic cancer leaving me alone to run our practice. I don’t see how I can manage being out for 6 weeks. I told my urologist I need a second opinion and he recommended William Huang at NYU. So, now I’d like you all to cast your votes and voice your opinions as to my next step. -Warren
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician9 Replies-
Hi Warren
Sorry about the recurrence after so long being cancer free. I have a friend who did have a recurrence of CIS, tried BCG, had a further recurrence and then tried Valstar. He has been cancer free 18 months now. Might be worth a try.
For sure on the 2nd opinion my friend.
All the best
Jack
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007
I had a standard 6 week course of BCG. No maintenance. It was never suggested. But based on my reaction to the last BCG, I’m not sure I could have tolerated it. Treatment can sometimes be such torture cystectomy begins to seem a pleasant option.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Hi Warren….long time no talk :laugh: Are you still in “maintenance” BCG? I can tell you I have had 24 total BCG treatments and I am (hopefully) coming into my 5 year mark in August. I had CIS one time 4 1/2 years ago and so far it has been effective for me.
I guess if there is a question, I would agree with Mike – go to a top doctor and weigh your options.
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
Warren,
I clearly misunderstood. Thought you meant he waited a year to biopsy it.
Nevermind…. :)Still, 2nd opinion, top doctor, evaluate the options based on what they say.
I’m a “minimize risk” kind of guy so I was all set to argue with my doc in order to get an R/C even if it was only CIS again. It turned out mine was muscle invasive at that point so I didn’t need to argue.As my 2nd opinion doctor said though, if you have a recurrence of high grade, you know where things are going. Sooner, rather than later, is better for curing it before it has a chance to get into the muscle, lymph, or other areas.
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Just to clarify: the follow up biopsies after BCG were negative. To the best of my knowledge I have not had CIS for a year. Erythema in my bladder has been an ongoing issue for 11+ years, so while I didn’t think biopsy every quarter was necessary, I requested that we do biopsies if the erythema persisted 1 year.
-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant 5/2014
Pediatrician
Welcome back Warren,
I’m with Mike. When I found out I had BC, I couldn’t have a R/C
quick enough. I could not handle the continual agony of BCG.
You have surgery, recoup, and for the most part cancer is behind you.
Life is, as it was pre R/C. GREAT!!!!
Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
Warren
Sorry to hear it is back. Kind of surprised your uro let it go a year before biopsy or that you let him go a year.
CIS recurrence after BCG and follow up maintenance is not so good. However, it is not yet invasive so I’d certainly agree that a top uro is the way to go. IMHO your uro lost his credibility already. Going for a whole year with CIS is pretty darn risky.I can say without a doubt that I am glad I got mine out. Even though I have to cath, I am way better off without the bladder and prostate.
Good luck!
Mike
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Warren,
That’s kind of a tough call as to what to do. Some will say a RC is called for, others will say to keep going the conservative route and spare the bladder. Myself, if I have a reocurrence I’ll go back the MSK and would strongly consider the RC if it was suggested to me.
As you’re aware, CIS is high grade and can become invasive thus lessening your long term prognosis. A reocurrence while on BCG is not a very promising sign. Being in healthcare may change our view a bit also (I’m a pharmacist in a hospital). I see what can happen when cancer advances and would therefore more likely go the RC route sooner if things don’t look encouraging.
I’m sorry to hear about your partner’s diagnosis (as well as yours), but in my opinion you have to do what’s right for you right now. Being out for 6-8 weeks can create a lot of problems, but so would your cancer becoming invasive. You might have to retire all together if that happened. I don’t know much about running a doctors office, but maybe you could get a NP or a rent a doc to put out any fires while your out if it comes down to that. In my opinion now your obligation is to yourself and family 1st.
I guess my advice to you is get a 2nd opinion at a major bladder cancer center. Once you have all the facts and opinions then make the decision that seems best to you and you family. I hope everything works out for you. Keep us posted.
47 yo, Ta G3
Diagnosed 11-24-10
BCG induction starting 12/17/10 followed by BCG maintance.
Warren,
Pleased to meet you. I think that if it were me I would go for the treatment. I don’t see where an RC should be a first choice in your situation. Yes it “could” shorten you’r life, but not always. And if it did, by how much?
I hope others will challenge this issue. I feel it is a very difficult choice to make. And there is no right or wrong answer. Each of us have to make some what “Leaps of Faith” choices with our treatments. And the more help we get with them, there better are decisions will be in the long run.
Please keep us abreast of how things are going. It is really nice to know that I might be facing these problems 10 years from now.
When I was first diagnosed I was sure it would all be done with in months like my Dad. But now, with the help of everyone on this site, and one heck of a good Urologist. I know I will be around a lot longer than a few months.
Prayers be with you.
Mark
Age 55
Diagnosed BC 12/20/2011 Ta No Mo 0a Non-Invasive At age 48
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