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1st Experience with BCG
With my 3rd recurrence of TaG1 happening in August, I have now started BCG treatments… first one was last Friday, and I was pleasantly surprised that I really had no pain, no bleeding, and very little urgency. I did notice some tissue sloughed off for a couple of days this week… but I hope the next five treatments go as well! )I’m really getting tired of watching the screen during my cystos, and saying “uh-oh” at the same time my doctor does!!:laugh: )
Lauren
TaG1 12/05
3 recurrences
BCG started 9/0934 Replies-
I’ve had recurring TCC for 13 years. I have done BCG treatments the whole time. I always have severe pain and bleeding a couple hours after I release the solution. It’s extremely unpleasant to the point I always debate whether I’m going to go back. They have never given me any kind of treatment for the discomfort, other than the Pyridium and ibuprofen, which do not work.
The pain issue with the whole process has become a big issue with me. I just had surgery (resection of tumors) this week and normally my doctor would prescribe hydrocodone for any discomfort. Now he is too scared because of the opioid crisis. I have never asked for a refill or displayed any signs there was a problem. They just expect you to go home and sit in your discomfort. They also want to believe their alternative pain solutions actually help because it makes them feel better. They don’t realize the repeated discomfort and pain is just as traumatizing as any diagnosis. Opioids can be used safely and effectively and are indicated in many cases. It’s just become a buzz word in the media that’s hurting patients in need.
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Hey Mike! The last time I saw my Family doctor, I saw the rubber glove come out and I said “It’ gone, so I won’t need that!” He said “there are other things to check in there”
So what gives. I got it anyway! :laugh: :laugh:
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Hi David
Good to hear the 1st treatment went well. Drink plenty of water today and tomorrow.
BCG = Bladder Cancer Gone
Jack
TA Grade 1
3 Turbts
30 BCG Treatments
Cancer Free since Nov 2007
Glad to hear that it went well for you David!
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.
I survived my first BCG – Not as bad as I had thought!
Thanks for your advice – it helped
David
T1 high grade dx 9/09
1st BCG 11/10/09
I’m confident that it will work for you too!
A very high percentage go without recurrence when maintaining the BCG protocol.
I always seem to fall into the darn small percentage group in everything except lotteries! :D
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.
Good to hear – I’m confident that the BCG treatments will work but, of course, you never know
David
T1 high grade dx 9/09
1st BCG 11/10/09
Yep…It’s one of the upsides of getting an RC. :cheer:
I hope you never need one but for those of us who have, we do enjoy a couple of upsides.
Cystos don’t hurt in the least little bit anymore AND no more annual prostate exams! :woohoo: :silly: :P
If the doc starts putting on that latex glove, I just say “I hope that’s for you because I have no prostate to check mate!”
Hey! There has to be some upside to these dang things.
It certainly isn’t worth getting an RC from a “convenience” factor but it certainly isn’t so bad as people imagine though.
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.
red rubber 16 french size catheter? Yikes! Sounds like a garden hose!
I was asleep for my 2 TURBTs so I only know the feeling of the catheter removal the next day, not the catheter insertion.
David
T1 high grade dx 9/09
1st BCG 11/10/09
Best of luck David! Rudy’s suggestion about the deep breath is also a very good one. I forgot about that. You want to kind do like you are going to pee when the scope is getting to that spot. It opens it up a bit and makes a big difference.
I’ve had an RC and they removed the prostate so I sometimes catheterize myself with a red rubber 16 french size catheter. I think that’s actually bigger than the cystoscope and it doesn’t hurt a bit. I couldn’t have even imagined that before! It was one of the things I was really worried about when faced with the surgery :)
I sure didn’t like it one bit before the surgery though! :blink:
However, the numbing gel DOES make a difference but be sure to have them wait 10 minutes after administering it so it can work its way down in there some.
That changes it from “HOLY CRAP!!!!” to about a “that’s not very fun” on the comfort scale.
Do let us know how it goes.
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.
:blink: David, Mike is right it may seem a little odd to say, but it helps if you can just relax your stomach and abdominal area as they it that prostate portal, I found it helps to take in a breath and then slowly let it out as you try to relax.
Good Luck
Rudy
Thanks for the advice Mike – I’ll let you know how it goes
David
T1 high grade dx 9/09
1st BCG 11/10/09
David,
Make sure to ask them about the lidacaine gel. They put that in and it numbs things up. You want to wait about 10 minutes or so after they put the numbing gel in before they do the BCG instillation.
While it certainly isn’t “fun”, it is usually not so bad either. It’s just the prosatic sphincter area that is tight and once they pass that is no problem at all (usually).
Good luck with your BCG!
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.
I have my 1st BCG treatment in 6 days. For some reason, I’m most nervous about the catheter!
David
David
T1 high grade dx 9/09
1st BCG 11/10/09
Just finished my three weeks of maintenance….Let’s just say that the entire month of October was awful. The third treatment wasn’t quite so bad…think it was just knowing that I wouldn’t have to do it again for six months. We did settle on 1/3 dose for each this time.
I just keep telling myself…I gotta do this..it IS going to be worth it.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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