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BCG Maintenance or no? Your experience?

SilverGrizzly
0 Recommendations

I would be really interested in learning about who has or has not had BCG Maintenance recommended by their doctor. I'm confused about whether this is always recommended for CIS, but not always for other types of non-invasive bladder cancer, or what. If anyone would share their experiences I would appreciate it. Just a couple of questions would answer my confusion, I think. Thanks! Though any other information you want to share would be great. -Jan

1. What was your diagnosis? (CIS, etc...)
2. If your first round of BCG was successful, did your uro recommend BCG maintenance after your initial round of treatment?
3. If you had BCG Maintenance, how many additional rounds of BCG treatment have you had?

Explore topics in this discussion:

Taxotere Cancer Surgery Pain Confusion Endometriosis Carcinoma in situ Bladder cancer

35 replies

Shiz

Ta non invasive G 2-3 papillary

6-3-3-3 No recurrence after 15 months

mycopper

The problem with some uro's is they themselves are not sure, or they act like its a big secret. I just don't get it? We finally had to pin our URO DOWN AND ASK HIM what's next if bcg doesn't work? My husband is due for his 3rd bcg tomorrow. I hope he feels better than last week. This is new to us too. Even though its been about 2 years since he was dx.

jmch

Craig is undergoing his first round of BCG (4 of 6). If all clear, then 3 rounds quarterly for 2 years then annual checks. Because his was high grade, if it comes back ... out it goes. His doctor has been very good about telling us what to expect, when. I think this protocol is the current 'gold standard' for craig's situation. (he had a t1g3 tumor about 2 centimeters big). Note: the doctor would have preferred that he got his bladder out than to try bcg but...

LadyJane123

I am non-invasive ( Ta) low-grade G1 ( a few path came back with higher focal than others)

My uro did 5 BCG treatments, then next cysto showed recurrence of tumours. Proceed to TURB#4

5 more BCG, next cysto had recurrence of tumours again. TURB#5

5 more BCG, cysto during BCG treatments ( #3 of 5) showed recurrence. I finished that round of 5 anyway.
TURB#6

Went to second opinion uro for cysto, Recurrence. TURB#7 Path report came back as low grade and one tumour that was small. Second opinion doc did not recommend BCG or MitC for now.

New urologist in my city did cysto. Recurrence. TURB#8
Even though the path report is not back yet, he feels that since they are small ( BB size) and only one or two ( compared to the multiples I had in the past) the BCG has taken effect and no treatment necessary.
He will monitor me for my next cysto in 2 months versus the usual 3. If there is a recurrence he will decide on BCG depending on size and quantity of tumours.

He and the second opinion Doctor spelled out my kind of BC in a different way, referring to it like a garden. I will post a thread about that.

SilverGrizzly

Lady Jane,
Ha, a garden. What a lovely image! :-) -Jan

LadyJane123

LOL, I know Silver but thats what they both said. A garden. When I have a cysto and watch on the monitor I think of those papillary tumours as flowers ( nicer visual than weeds) swaying in the wind ( the saline/water in the bladder make them sway back and forth). LOL

lsh

Hi Jan,

I was T1 Grade 2/3(pathologists disagreed). One tumor half the size of an electric pencil eraser. I have had 6(induction) and two rounds of maintenance(3) so far. After one year, doc said maintenance every 6 months now. He would like to see me finish 2 more years, but knows that most patients don't make it 3 years. I have been clear for a little over a year now.

Lynda

Moonerj

1. Tumors 3, 1 was large TA Low Grade
2. 6 weekly BCG
3. recurrence 2 tumors TA Low Grade
4. 6 weekly BCG
5. Recurrence 1 Tumor TA Low Grade
6. 6 weekly BCG
7. No Recurrence
8. 12 Monthly Maintenance BCG
9. No Recurrences
10. Finished BCG Feb 2009.
11 Still Cancer Free Nearly 2 Years
BCG = Bladder Cancer Gone
Jack

SilverGrizzly

Wow, thanks everybody. It is very helpful to see all this info in one place. Together we are a wealth of information!

But interestingly enough, none of you had CIS. Maybe more people will still respond who did have CIS. Or is it much less common than tumors? -Jan

YvonneM

Ta non invasive G 2-3 papillary

Bcg 6 week induction My doctor does not like the maintenance program No recurrence on First Cysto Next cysto in december so we will see if No Maintenance was a good idea.

Yvonne

BJsHere

Transitional Cell Carcinoma of the Right Ureter and Kidney in 2003.
Both removed in October 2003.

Continued treatments of BCG and Mitamyacin until October 2008.

Walls of the bladder were being compromised.

RC December 10, 2008.

Did I like the treatments? NO
Did they help? Possibly
Are there side affects? For Me Yes
Would I do them Again? Yes

Amazingly, Dr. Schacct, that spoke at the Elk Grove Symposium stated
that no one is sure what the right dosage is
or
what the right number of treatments is.

Until this fact is determined,
I would personally say that I believe that it prolonged the spread for me.

If your doctor is suggesting this treatment than even with the side affects (which also vary by person) I suggest you go with his recommendation.

I wish you good luck.
I am here for you.

BJ

Moonerj

Hi Jan

wwwblcwebcafe.org

This site will give you the information regarding the different % by tumor type.
Ta is the most common.
Jack

SilverGrizzly

Hi Yvonne,
Did your doctor explain why he didn't like the maintenance program? -Jan

Memi

Well, Jan, you already know, I was dx'd with CIS, and you know maintenance has be reccommended.

Memi

Leslie45

Hi Jan,

My diagnosis was low grade, T1 - had several papillary tumors in Jan 2008. Underwent 6 BCG's and have been going for quarterly cysto's and 3 weeks of BCG treatments for maintenance. So far so good as it has been almost 2 years and no recurrances. In Feb I will go back for cysto and 3 more BCG's. After that I graduate to 6 months (cysto and 3 BCG treatments).

My uro is following the MDA's recommendations.

Leslie

drd

After 4 turbs, I have had 36 bcgs- so far, so good- all clear. Have next 3 bcgs in Dec- with luck and prayers, all will remain clear. All tumors have been superficial papillary, and I used to smoke (45 years).

Tony

birdman

I had invasive bladder cancer last Oct and received Neo Bladder surgery, no Chemo was given and so far Cancer free at one year.

EricAndre

Hi Jan,

My diagnosis (7/2002) was two different types of high grade cancer one being Cis and the other multiple large tumors (2cm), the Cis was in the bladder and the prostatic urethra. Even though it was non-invasive both my urologists wanted to remove the bladder immediately. We reached a compromise trying the BCG with a strong understanding that if the treatment did not work the bladder had to go soon. The treatments worked for the tumors but not for the Cis so the bladder was removed.

So to make a short story long the BCG cured the high grade tumors but not the Cis. Since we had initial success with BCG on the tumors, my two doctors postponed the RC but after 2 years and no success Trying every product they had including experimental treatments my bladder was completely destroyed by the treatments (Taxotere). the RC (Neo bladder) came as a relief for me. The harder part by far for me was the treatments BCG Interferon,mitomicyn taxotere and others, the operation RC was the end of pain not the beginning.
Be well
EricAndre

nancynursez637

I would not bypass BCG for recurrences, I don't think I would take in on the first surgery, and didn't.

NancyN

jj803

Hi Jan,

Although I did not do BCG treatment, it was discussed by two different medical centers for my supposed T1 disease. The regimen both recommended was as Shiz described. I think that there is not uniformity in the treatment regimen and that it is probably stage and perhaps grade dependent. Best wishes,

JJ

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