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bcg worries ?!

5 years 7 months ago #48155 by Alan
Sara Anne has the right words. "Uncomfortable" is also the word for me. Cystoscope or installations are all uncomfortable for 45-90 seconds then it is over. The BCG usually has some burning while voiding, cramping etc but for most is passes after 6-12 hours. Perhaps the MOST important item; this is NOT chemo where most of us know too many that have to endure that.

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.

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5 years 7 months ago #48147 by rocksteady
Thanks for the quick reply and the encouragement. I usually don't complain but I've had heart disease, MI's and a CABG at age 36 and many many procedures, strokes,stents, plates in my neck, blah blah blah. I know what it means when they say ' some discomfort'.
I guess I'm a little scared and this is really the first time. And I don't like painful stuff.
I realize this is very serious. They scheduled 3 appointments. I don't know why it wasn't 6 but I'll ask.
This looks like a great resource, I know how important it is to know you are not alone.
Thanks, rocksteady

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5 years 7 months ago #48146 by sara.anne
First, sorry to see that you have to join us!

Yes, there is a LOT about BCG here in this forum. Please remember that everyone is different. BCG is usually NOT a big deal. I would rather have it than go to the dentist. And also remember that CIS is high grade and has a real potential to spread rather quickly. BCG is nothing compared to the traditional chemotherapy that many other cancer patients experience.

What is BCG like? Using a very small catheter they basically wash your bladder with the BCG solution. You try to hold it as long as you can...hopefully about 2 hours. The BCG is intended to stimulate the immune system in the bladder lining so that it rejects the cancer cells. I had CIS...did the usual 6 weeks of BCG and then the complete maintenance series and have been cancer-free for 6 years. Believe me, it is worth it.

I did not find the instillation process more than just slightly uncomfortable. After the treatments, there are several hours of discomfort...burning, having to pee ALL THE TIME, passing blood clots. Over the next several days I felt fatigue. But it was nothing that interferred with my daily activities. I drove myself to the treatments, about 20 minutes from home, and was able to make it to my bathroom before the "fun" started.

Males may find the catheritization a bit more uncomfortable and the urologist usually uses numbing gel to help this. The side effects are not usually too bad the first few times; they do increase as the treatments continue...THIS IS GOOD...IT INDICATES THAT THE IMMUNE SYSTEM IS BEING STIRRED UP.

Also remember that people who have something to complain about are the ones whose posts appear most often. For everyone with a complaint, there are many more who are doing just fine.

You do not want to fool with CIS!

You mentioned that you are having 3 BCG treatments? The usual protocol is to have 6, each a week apart, and then about three months later a maintenance series where you get 3 weekly treatments every three months until 2 years have passed.

Good Luck to you...and YOU CAN DO THIS!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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5 years 7 months ago - 5 years 7 months ago #48145 by rocksteady
Hi, newly diagnosed, 58 yr male. Had burning upon urination. Urologist did cystoscope in hospital because I wouldn't be tortured anymore. I've had at least 15 cardiac cath and I hate not being able to move and have some painful stuff done to me. I told him I'd live w/ the burning so he said we'll do it in the hosp w/ sedation.
Now I'm told I have bladder cancer in situ.Had ct yesterday. He scheduled me for 3 bcg sessions and everyone in the office said it's just uncomfortable.
From some of these posts I'm thinking that his 'discomfort' is more like a very very painful procedure.
I see it is common to take prophylactic pain meds prior to procedure.
Why do they lie to us? I would feel better if he told me the truth.
Any words of wisdom?
Thanks, rocksteady They must have a numbing spray or something,right?

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