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Analyzing Results Of BCG
I am almost done with my 6 initial BCG treatments for non invasive CIS, I have 2 left, and then I will have a 6 week break, and then a cystoscopy and a biopsy. What should I expect for a result of these treatments. My Bro said I got this early!
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16 Replies
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While CIS and papillary are different, from what I have read CIS actually responds better than papillary. Mine was caught early per the small size (just one stalk) and just getting started. There are a few well respected doctors that have done just 6 treatments and that is it. Maintenance or something extra for sure is where I would be. My URO actually either interned or was a resident under Dr, Lamm some 30-40 years ago when he was in San Antonio. For me, he may have “customized” what he did because of the size and early detection. Also, any invasive test: cystoscopy, CT scan, BCG treatment all incur some small risks, to where either his skill cutting my tumor out plus the good chance BCG worked also, he did the 6 BCG, a wait and check and 6 more and said stop. I then did a year of every 3 months cystoscopes, then he took me to 6 months for a year and then only with my blessing he took me to yearly. Again, because every case is different, mine was small and caught early. I am not sure this is good for the majority of cases. He said don’t subject myself to any more than I need to. I also do a cytology opposite 6 months from my annual physical as another non invasive test.
Sorry, I didn’t mean to write a book but, I am anticipating some of what if’s etc you may have. I trust and feel you will beat this and someday be another helper to someone else!
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 Alan, how does your original diagnosis compare with CIS? Am I correct in the fact that you had 2 series of BCG and that cleared it up. Hit them long and straight.
Mistersac, Jack and Cynthia have given great observations! The good news is that BCG works for the majority of us. Heck, after almost 9 years out I still have that monkey in the back of my mind also however: life is still one day at a time. Chances are very good that something else will end our journey (the turnip truck to poke fun at myself)! I play 150+ rounds a year so it is good to chat with a golfer. My advice, go out and enjoy soon!
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.
Mistersac,
I uploaded a recent file that compares BCG treatment protocols and results over the long and short term. Keep in mind that all published articles have limitations and exceptions. Newer treatment options, often with great promise for a small sample, don’t have a compelling track record, while options with a longer history often trend to an average value.
I find the results documented for TCC treatment using Dr. Lamm progran, including BCG protocol to be very appealing. My own TCC remains at a standoff with BCG at 18 months and 22 doses of BCG. It is again time to consider what to do next – continue BCG or try some other (newer) approach which will be lacking in documented results.
Go to the ARTICLES of INTEREST category and near the top of the list you will find the article titled, “Consensus statement – best practices using BCG for bladder cancer. 2015”. The first set of graph tell much of the story.
Best,
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
I know you are right. My wife tells me I dwell too much, but this came out of the blue in November, and although I am 70 I exercise 4 days a week, and I played 80 rounds of golf last year. My biggest fear is that I won’t be able to live an active life. I guess it is in God’s hands, and I have to accept that.
I would suggest taking this a step at a time. Worrying about what may not happen is a waste of energy save your fire for known facts. Wait and see what your next check finds, I know it is hard but you are not going to change a thing worrying about it. I know this as a fact from personal experience.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Cynthia,
I have a meeting scheduled with my Uro after my 6th bcg this Wednesday. I want to ask him what he envisions as the next steps depending on my check in 6 weeks. I do hope that the bcg has arrested the Cis and I go on a maintenance program, but I know that it is also possible that I will have to undergo a turb and another 6 BCG treatments. If the bcg doesn’t arrest it is it likely that the next series will? How many series can you have before they change protocol. I did get this early, and it was deemed non invasive, and started bcg right away. This is my first journey, and there is so much uncertainty.
Welcome to our community. I have been following your thread and your concern about progression is understandable. Time will help but in the early days it is hard to think of anything else isn’t it? The problem is a lot of your questions do not have an answer again time will tell however CIS does have a very good response to BCG the statistics are with you. It sounds like you need to sit down and make a list of your questions and talk to your Urologist. After your next check you should have a better idea of what is next and what the proposed BCG maintenance plan is. Keep us updated and I hope to hear many all clears from you.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Sara.Anne if you were me would you consult with your Uro around the time of my 6th CBG as to his strategy as to maintenance or follow up treatments after the checkup.
Both because of its effectiveness and for your peace of mind, l would recommend that you really insist that your uro prescribe BCG maintenance. The protocol I was on was three weeks of BCG every three months for two years . And yes, the side effects increase as your body becomes sensitized and the immune system reacts to the BCG. There are several other protocols for maintenance that are used, and there is no evidence that one is any better than another.
Should the side effects become too much, and they often do, the dosage can be reduced significantly with no loss of effectiveness.
Sorry, but our Forum is not set up to allow private communication due to privacy issues.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Adding exactly the same thoughts as Sara Anne. The vast majority have a good outcome with BCG. Does it ever leave my mind? Not completely but, I am at peace either way. Lot’s of others we know have far worse problems. Someday something will get me however I just take one day at a time and enjoy it even more. The result is being more stronger and effective with my life!
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.
Thank you again Sara.Anne. My Bro told me that there was a 80/20 cure rate for this, but it drives you crazy not knowing what the progression might be. I jumped right on this when my symptoms appeared, and my URO got me on BCG right away. Things are constantly running through your thoughts, because of the unpredictability of bladder cancer, and my fear is having it spread, although Have had so many people including yourself cite the successes with BCG. If a second series of BCG or a maintenance series is my follow up, will the frequency of BCG change the side effects, so far I have not experienced any. I want you to know how valuable this Forum is to actually exchange info with people who share the same concerns. Do you ever allow people to converse with you off line, for you are certainly knowledgeable? Thanks again for your insight.
It is difficult to give you a definite answer! For most of us the result is really good. For a small number CIS is still present and the usual thing is to repeat the BCG series. With this disease constant vigilance is the rule. I will have to admit that even after 9 years I still get nervous as my now annual exam approaches.
The odds are that you will have a great checkup!
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thanks for the reply sara.anne. This is my first journey through this process as this came out of the blue in early November. I was, I thought, in good health working out 4 days a week, but this appeared. I got to my URO right away, and within 10 days had a ct scan, cystoscopy, and biopsy which showed non invasive CIS. My Bro then introduced the BCG regimen which is almost complete.As you said I know there is no way to predict the results of the BCG, but waiting 6 weeks before the next check will be a nervous time. Given the early detection and the CIS being non invasive at the very least should the BCG treatments stop the cancer from spreading. I am hoping for a clean checkup, but I know that this could be a long haul, and I can deal with the BCG treatments, for I can resume a normal routine after the day of the treatment. You hear from a lot of people in my situation what do you see as likely outcomes of this initial check?
Mister,
First, keep in mind that bladder cancer frequently returns, and that CIS is high grade cancer. Give this, you can at a minimum expect to be followed closely, starting every 3 months for a couple of years; you MAY (and perhaps will) receive follow up BCG treatment on a schedule (Dr. Lamm) the has been shown to reduce reoccurence.
That said, the good news is that you are being treated and followed. It is possible that you will not have a recurrence, but wil have follow up treatment.
Immediately, the doc will try to determine if the CIS is no longer seen, or is still present. S/he may also see inflamation of the bladder due to the BCG and you willhave to wait a bit longer for a new opinion.
I hope this helps with what to expect. Expect continued treatment.
Best
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021Sign In to reply.
