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2nd opinion
I had my 2nd opinion consultation this week with Unhiversity of California Irvine specialists, and it appears that the BCG therapy is the most common one used when the cancer is in situ and hasn’t invaded other areas. A couple of things came up that I hadn’t really thought about. One being that since I had my left kidney removed last january, my bladder is somewhat smaller than normal, and it will somewhat lessen the amount of medicine I will be given. It wasn’t something that will be an issue. Also, with the 1 kidney, the percentage of success is lessened somewhat but not dramatically. I was also relieved of a lot of fears of the safety of this virus that is introduced. While safety and sanitary proceedures need to be adhered to during treatment, my fears of infecting myself or my wife are very remote. I will see my uro next Thurs. and we will set treatment dates. I am a lot more comfortable going into this now. I thank everyone for their comments, and will post after treatment begins. :unsure:
I have really gained some insight into this disease and appreciate the support all who who have responded to my queries have given. Thank you10 Replies-
It sounds to me that you have been cured! Surveillance and keeping positive are the keys to your continued success! My best to you! Laurie
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I am now on once a year!!! I admit that it makes me a little nervous to go that long.
SA
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hi Sara ANNE,
Oh geeze, how did I goof up your name I don’t know! I’m glad you got a kick out of it and gave you a blast from the past. So you were very lucky that your first series of 6 BCG washes resulted in ridding the CIS, and that the subsequent maintenance BCGs have served you well! Congratulations to that and surely we all hope it stays away forevermore! Do you go for checks every 6 months or once per year? Laurie & Phil
Laurie, your post made me laugh! My name is Sara Anne, and you called me “Sara Jane.” That is what my mom used to call me when she got EXASPERATED!! :laugh:
Yes, as you understand, this is a matter of opinion. My BCG regimen appears to be different from your husband’s…I had the six week primary series and then, for a period of two years, three weeks every three months. I had CIS and am now six years out with no recurrence. Bladder removal has never been suggested for me. BUT, I have already decided that IF the CIS comes back, the bladder goes.
So, very careful watch and wait or ????
Your decision!Sara Anne (alias Sara Jane!!)
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hello Sara Jane,
Thank you for your reply and encouragement. It was interesting to read that the census of the forum is 50/50. We have read that it is a debate even among urologists as we have experienced that with 2 Cleveland Clinic urologists. We are hoping that if someone on the forum has been in this situation of having BCGs beyond the normal 2 rounds, resulting in repeated biopsy reports showing all negative results, and yet the urology oncologist does not recommend continued surveillance but highly recommends RC. While statistics show that 30-60% of people with CIS will have a recurrence, what if one falls into the percentile that it does not recur? You would never know that if you opt for RC. The risk, however, is if the CIS does return, will it come back with a vengeance and be invasive? My husband’s CIS is currently non-invasive. That is our dilemma and we are hoping someone on the forum can share if they personally had this situation and if they opted to continue with surveillance and won the battle for years and years to come. Ok, I’m a perpetual optimist, but only to a point. I want my husband to be around even if he must spare his bladder and learn to live with the chosen diversion. Thank you for listening. Laurie & Phil
Laurie and Phil, I am not the original poster, but will try to reply to you. You are in the situation that is most difficult for patients. If it had started to spread, there would be no question…out with the bladder!! So you are left with two options, keep doing as you are and watch it closely, or go ahead with an RC.
Some of us were debating this just the other day at our Board meeting. And it IS a debate. However, you need to keep in mind that CIS is especially insidious and it IS high grade….which means that it can spread, and it can spread quickly.
About half of the people feel that they would continue to wait and watch…and the minute it returned again, they would of course have the bladder removed. And hope that this didn’t happen.The other half would say that it probably IS going to come back and why take a chance?
If you do decide to go the cystectomy route, you would have plenty of time to plan and investigate what type of diversion might be best. Lots of people lead very comfortable lives with a diversion…even scuba diving!!
Hard choice, I know.
Wishing you a lot of luck!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Hello Islander1der,
I realize your post to the bladder support website is from 2 years ago, but I am searching for people like yourself who has had to deal with this disease. I hope you are doing well. Can you share with us your experience? A little history – my husband (age 67) is otherwise very healthy, altho he had left kidney removed in 2011 due to transitional cell carcinoma. In February 2013 CIS of the bladder was discovered. He has had 20 BCG washes since Feb 2013 and his last 18 biopsies (since Feb 2014 this year) have all been negative! Regardless, the Cleveland Clinic urology oncologists tell him he must have the bladder removed because the cancer will come back. It is very hard to remove a bladder that has proven to not have any active cancer for the past 5 months. We feel my husband is at risk but can’t help but wonder if CIS can be continually surveyed and treated to avoid bladder removal and the change of life it creates, in spite of what the surgeon is telling us. Whatever you may be able to share, we thank you. Laurie & Phil 8/5/2014
Best of luck to you on the treatments. Glad to hear you got the 2nd opinion. It usually helps with comfort level on the path forward. BCG has a great track record for treating CIS.
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.
Wishing you the best with your treatments and hope they kick that BC to the curb! Also glad that you are feeling more comfortable with the process… that means a lot when your life has been turned upside down like this. Keep us posted how you’re doing!
Best wishes… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
Glad that you got so many of your questions answered….It is really difficult when all of this is so new. I know it was for me. Dr. Lamm, sort of the “BCG Godfather,” reports that even at 1/10 the initial dose, BCG can still be effective.
You will do well!!!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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