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BCG — is it really an option?
Hi everyone! I’m back from Italy, had a nice opportunity to forget all about what was going on in my bladder, and returned to home to some amazing weather for this time of year. Yesterday, however, was a return back to reality with a jolt. I had my pre-op appointment for my follow-up TURBT next Tuesday. My doctor discussed the various scenarios: clean margins, possible leftovers, etc.
Then we talked about BCG. When I got my initial path report, he suggested, based on the tumor (superficial) and grade (high), that a second TURBT and BGC was the sensible route to take. Yesterday, he indicated that BCG is pretty rough on the bladder, can lead to scarring, reduced bladder capacity, incontinence, and flying monkeys. Okay, I made the last one up, but I’m questioning whether the BGC is the way to go.
Pros: Doctor said that my type of tumor has a 50% or better chance of recurrence. BGC could reduce that risk.
Cons: Scarred, messed up bladder, possibly for no reason if I fall into the category of “lucky enough to have only had one occurrence, and now we’re done.” Gee whiz, I’m 49. I don’t know if I’m ready to beat my insides up that drastically.
He suggested an option of waiting until my 3-month cystoscopy to see where things are. I could always do the BCG at a later time.
Should I stop worrying about this today, go enjoy the sunshine, and wait and see the path report from next week’s TURBT?
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16 Replies
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Kimberly,
I was dx’d three years ago, this month, with Ta CIS. I went through 24 BCG Treatments, with no re-ocurrence
The BCG got progressively harder, as it is supposed to do, and I had some unusual side effects, but all in all the big picture is still three years cancer free :laugh:
BCG does work well with CIS, but there are a lot of great survivor stories just on this site with BCG working well.
As Patricia said, you would know pretty quick if it isn’t working for you.
Good Luck
Nancy
Nancy S
Ta CIS
dx Ta 11/06
dx Ta CIS 10/07
Pat,
My URO said my tumor possibly could have graded as a 2 but, he wanted to error on the safe side. For him it is low or high grade. FWIW
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.Kimberly,
Sorry but i don’t remember where you are from or where you are being treated?
Rocky got her second opinion at the #1 Urological Hospital in the country so i would probably go with that doctors opinion after the second TURB.
But i would suggest a second path opinion even at Hopkins..you can do it by mail.
In 2004 the World Health Organisation developed a new grading system for early bladder cancer, which is increasingly being used. This system divides bladder cancers into the following groupsUrothelial papilloma – non cancerous (benign) tumour
Papillary urothelial neoplasm of low malignant potential (PUNLMP) – slow growing and unlikely to spread
Low grade papillary urothelial carcinoma – slow growing and unlikely to spread
High grade papillary urothelial carcinoma – more quickly growing and more likely to spread
I really hate the new system…what the heck is a Grade 2..low or high?
Pat
Hi Kimberly, Three years ago I had five tumors taken out, ta grade 2 . The uro wanted to do bcg, I went to John Hopkins for a second op. We decided to do a wait and see. One year later they took out a small neoplasm. I still went without bcg.
It will be three years in Jan with clear cystos. If it comes back I will have to see about crossing the bcg bridge then. It really is a decision only you can make. My Dr. felt I could do a wait and see so I have.
Goodluck, I went to Italy in 76 and I wasn,t old enough to appreciate it. lol rocky
Kimberly I have had 18 BCG treatments to date for focal Cis. For about 24-30 hours I do have side effects that can be rough but beyond that time period I am ok. I was DX in Dec 07 with no recurrences since 04/08
Joey
Kimberly,
I’m going through a similar situation as you, but perhaps I’m further down the road. Over the last 14 months I have had three TURB with two diagnoses of Ta High Grade tumors. I have had 15 treatments of BCG. Three weeks ago with my quarterly cysto we found another suspect area. Because of the history of high grade tumors, my Uro recommended and I have concurred that we do another TURB. We are hoping it is just cystitis from the BCG, but I would rather have the procedure than risk on waiting another 3 months. I have to agree with the others that once you have a final report, it will be easier to make the recommendation. However the treatment of BCG is something I would recommend rather than risk the wait and see or the Cystectomy. As you have probable read here that BCG is no picnic, yet unless you are one that have a severe reaction, it is easier than other treatments of cancer (e.g. chemo & radiation). So bottom line, don’t fear it, just accept that it is goes with the territory. Good luck with the treatment and don’t hesitate to contribute here your experiences. We all get educated from each other and that is a good thing.Chuck :huh:
dx – Aug 2005
Five reoccurences (last 12/09 Ta high grade)
BCG Started 10/09 (2 6wk treatment)
BCG Maintenance started 4/10
Kimberly,
You have a GREAT attitude. The 2nd TURB is just to be sure there is no mucsle involvement. You probably are way ahead on the curve on figured that out. My URO as well as many other posters have added BCG cuts down the possibility of it coming back. It certainly beats chemo and it’s side effects and I believe immunotherapy such as BCG someday will be the answer to beat cancer.
Lots of hope and positives as I am 2 1/2 years out and many here are further down the road in beating it!
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.
oops, sorry … double post!
Thank you, everyone! Cynthia, my husband and I will get busy checking out all these links, and I promise a more detailed report on Italy. We are having uncharacteristically warm and sunny weather for late September, so let me go play this afternoon (and tomorrow, and the next day …) and I’ll write up a full report when the clouds come back!
First off in the terms a conditions it says you have to post about trips in chit chat when you get back so we can live vicariously through you. Not really but we really like hearing the good stuff also.
Whenever I have to make a treatment decision I research the heck out of it until I know I understand what I am dealing with. Then I ask myself what are my best options that gives me the best chance of beating this thing?
What the National Cancer Institute has to say about it with additional research links
http://www.cancer.gov/cancertopics/pdq/treatment/bladder/HealthProfessional/page6
What a maker of BCG has to say about it and its side effects
http://www.ticebcg.com/Consumer/bladderCancer/index.asp
http://www.ticebcg.com/Consumer/aboutTice/index.asp
Dr. Lamm is thought to be the father of BCG and there is belief that a reduced dose for some might be affective with fewer side effects. Your Uro could consult with him on it and amounts.
http://www.bcgoncology.com/drlamm/
Dr. O’Donnell of the University of Iowa does a lot of research on other agents used instead of BCG. Again your Uro could confer with him.
http://www.uihealthcare.com/depts/med/urology/research/bladdercancer/bcginterferonalphastudy.pdf
http://www.uihealthcare.com/depts/med/urology/urologymds/odonnell.html
You are doing the right thing you are being your own best advocate.
I am sure this will get you going but not right now, get out and enjoy the sun shine there is time to figure this out.
Keep us updated
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
There are many, many of us here on the Forum who have been through BCG and are doing GREAT. There are moments of being “uncomfortable”…but compared to friends who have had chemo and radiation for other cancers, it is minor. Yes, there are a minority who have a bad time. (Have you read the side effects of any drugs you are taking? SCARY….to the one in a thousand who has the side effect.)
I felt, when diagnosed with CIS, that there was no choice. BCG gave me a good chance of keeping my bladder. Am through with it as of mid-September, doing great, and hope to continue. IMHO, doing nothing is not an option.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Ta high grade seems worth the risk of BCG. I tried, but I failed BCG and then it came back and was invasive.
The stats on BCG are pretty good. It works often enough to be worth giving it a shot.
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.Well with a Ta or T1 and high grade bladder tumor its either going to go away with treatment with BCG or come back…you’ll know pretty quickly so its not like you’re going to have a bazillion treatments of BCG…if it comes back still at high grade consider the cure
Well…not wanting to sound negative but to some degree it’s a crap shoot; my mother-in-law was dx’d w/superficial BC in her early 50’s (back in the mid 70s); getting at that time something similiar to BCG…over the years, the doctors continued to treat her with chemicals and some minor surgery; yes it was painful and there was lots of scarring but she was able to keep her bladder until she was 80 years old and finally had to get an RC as there was hardly anything left of the bladder.
Me, strangely enough, I was dx’d with a more aggressive bladder cancer, invasive into the bladder, in my late 50’s, a few years ago. I feel fortunate that since mine was labeled by the surgeon as a “renegade” cancer, I didn’t had to struggle with a decision about what to do, felt I had no choice but to have mine removed.
If you have the best surgeon you can find, study all the info. and options avilable, ask lots of questions, I’m sure you will determine your best course of action. Whatever you decide, I pray you will be at peace with your decision as that is so important to your mental well being.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
GKLINE wrote:
I AM jealous of your Italy trip.though. I hope you ATE your way through the country.
And then some! I’m happy to report that I was able to bicycle 160 miles during our week in Tuscany. More miles than I expected, not as many as I had hoped.
And to everyone else: please, I want to hear as many opinions as possible!
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