Position and Length of BCG Treatment

2 weeks 8 hours ago #61548 by sara.anne
Replied by sara.anne on topic Position and Length of BCG Treatment
Well, I can only relate my experience and that of many others who have posted on this Forum.  But I have never heard of anyone having to stay in the doctor's office for two hours!!  Of course, "your mileage may vary."

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 weeks 9 hours ago #61547 by bbowlja
Replied by bbowlja on topic Position and Length of BCG Treatment
Thank You Sara Anne.  I am trying to own this new wrinkle in my life and I just want it to go away.  But it won't.  I will have a consultation with my urologist on 1/18 and surgery on 1/24.

I have been reading a number of things about BCH being pumped in while you laid on a table on your back for and then rotated every 15 minutes while you try to hold in whatever is in your bladder.  Some even say they want you to hold it in for 2 hours while you are lying on this table.
 I really hope, like you, I can just have it put in and then go home to wait as long as I can in the comfort of my home.

I'll find out on the 24th.

Thank you again for your response.

Mike

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2 weeks 13 hours ago #61545 by sara.anne
Replied by sara.anne on topic Position and Length of BCG Treatment
Hi Mike and welcome to a club you didn't want to join....BCGers!!  I did the six weeks initial treatment and then had maintenance instillations for two years .  I am so grateful for it since I have been bladder cancer-free for 14 years now.

First piece of advice....ignore most advice!!  A lot of what you read is not exactly correct.  I will tell you some of my experience.  The BCG was instilled into the bladder via a catheter in the urologist's office.  I then drove 30 minutes home.  Usually lay down and watched TV.  For the first few times I did sort of roll around since I had read that this was necessary to coat the bladder.  When my urologist heard about this he laughed and said that the bladder is small enough to get the BCG all over the surface and that this was not necessary.

I had been told to "hold it" for two hours or as long as I could up to two hours.  The last few minutes were difficult, but I usually made it close to two hours.  Then you sort of "live" in the bathroom for a while.,  Every time you pee you pour a cup of bleach into the toilet bowl for six hours.  You will feel burning and urgency and will need to pee a LOT during this time.  Drinking water helps wash the BCG through.  It eventually calms down, but usually for a day or two you do feel urgency.  Still, after the first day you can live a pretty normal life....back to work.

There are side effects to BCG and they get worse the more treatments you have.  This is GOOD because it means that the BCG IS affecting the immune system when is what we want.  The most usual early side effect is fatigue.  Then there can be burning and urinary urgency (sort of like a UTI.)  If the side effects become too uncomfortable the urologist can reduce the dose.

Remember that when you read "horror" stories online that people who have only minor issues are not nearly as likely to post their experiences and those few who have side effects!!  BCG is a real "miracle" drug for a lot of us!  It is no where near the experience that those unfortunate patients who need systemic chemotherapy have.

You will do just fine!  And we will try to answer any questions you have.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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2 weeks 15 hours ago #61544 by bbowlja
Position and Length of BCG Treatment was created by bbowlja
Hello all.  My name is Mike. I am 73 years old.  I had a cystoscopy on Jan 3, 2023.  I understand that after TURBT I will wait 2 weeks and then go through a series of 1 BCG treatment a week for 6 weeks followed by another cystoscopy assuming that cancer hasn't gone into muscle.  What is it like.  I have heard that you lie flat on a table and rotate every 15 minutes for 1 hour.  I have also heard 2 hours.  I have also heard that it will be given through a catheter while you are sitting on a couch and that you can walk around after it is in assuming the catheter has been removed.  I would appreciate hearing from some re: sitting, standing, lying down, can you read. can you watch movies on an ipad.  

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