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Pain following TUBRT then continuing following BCG

4 years 3 months ago #46891 by pemquid
I used to have a lot of pain even following cystoscopy, and did successfully complete a full round of BCG. Besides taking some pain medicine and an antispasmodic before procedures, I found that sitting in a hot bath immediately after getting back from the Dr.'s office was a big help. I also had a reduction in the BCG dose to 1/3rd, which was done after I had a pretty high fever after one of the treatments.

It would certainly be worthwhile for you to let your Dr. know about the continuing pain. They can skip or postpone a BCG treatment if the bladder is very inflamed. Best of luck!

Ann

Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.

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4 years 3 months ago #46842 by DougG
I will second Sarah Anne's recommendation that you discuss cutting the BCG dosage with your doctor and Flamenco's recommendation that you drink all you can AFTER you have held the BCG for as long as you can. These suggestions may give you the best chance to finish your treatments.

Best wishes,
Anita

Anita
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Caregiver

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4 years 3 months ago #46832 by Dingaroo2825
Thank you again, Sara. In my previous post, I may have given you a version of my bladder cancer diagnosis that is incorrect. However, I am not familiar enough with all of the medical terms to be sure. I have discovered that my pathology reports - there were two of them, state that I have "papillary urophelial carcinoma." I now assume that this is a different cancer than CIT, although I do know that the tumor had not penetrated the bladder muscle wall.
Obviously, I don't know either, if this condition can be as painful as CIT, or if it all is the same. I am told by uro office that the "discomfort gets more severe as the treatments progress. It all tends to ease once the treatment protocol has ended. I also understand that my tumor(s)were "mushroom" shaped and located at the top of the bladder. Again, I don't know how all of this relates to the pain. Perhaps there are others who have had a similar dx or experience. Also, as a 30-year member of Alcoholics Anonymous, I want to pass along how important, comforting and relieving it is, to have a place such as this to come to and share the feelings of our common affliction.

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4 years 3 months ago #46827 by Flamenco.
One of the most important things I have found to reduce the pain is after voiding the bcg, to keep drinking plenty of wáter to keep the urine dilute. Literally after every trip to the bathroom, I drink a glass of wáter. It means more trips to the bathroom, but the side effects seem to clear up in a shorter time.And if you can hold it,wait until there is a reasonable amount to pass before you go( difficult I know because in the beginning it feels like your bladder is full all the time.)Also if you know you are going to need pain or anti spasm drugs, you almost need to take them before you have voided the bcg, as they take a while to kick in, but the side effects start much more quickly.

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4 years 3 months ago #46826 by sara.anne
So sorry to hear of your problems, and the lack of help from your urologist. It is usual for the discomfort (isn't that a strange word for pain?) to increase with increasing numbers of BCG treatments, and it does seem to be worse a day or so after...when the acute effects are over.

Was CIS (carcinoma in situ) a part of your diagnosis of high grade? That can cause some of the symptoms you describe.

As I went through the BCG treatments, we sometimes had to skip one because my bladder was so irritated....they call it "BCG-cystitis." It wouldn't hurt to ask to try this, so that the bladder can heal itself a bit more in between treatments.

Also, it is possible to reduce the dose of BCG. Even 1/10th the initial dose has been shown to be effective I was on 1/3 long before the end.

Try discussing this with your urologist...and don't let them bluff you! You are the guy in charge!!!

Good luck to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 years 3 months ago #46823 by Dingaroo2825
I have had almost constant pain in entire pelvic area since prior to dx of non-invasive bc. Original TUBRT removed tumor and revealed that although non-invasive, it was cancer of a high grade. Second TUBRT was done and two weeks later BCG was begun. I always have a burning pain, and at times, sharp pain. I can only retain the medicine in my bladder for about 40 minutes, and that in my third treatment with less time held in the first and second treatments. I am curious about the pain, wonder if others have it and if it is more common with men that women? I don't really get any answers from Urology except that "everyone I different". Pyridine helps some. It seems that the pain is worst on the day of treatment and over the next two days - then, a little better. Isa this common? thankfully, my primary care doc thinks that my bladder is totally inflamed from all of the procedures and the caner, so he has worked out a schedule of pain medicines to help. These are opioids and I will not get them forever but I'm not sure I can get through the 6 weeks of BCG without them. Is this familiar to others?

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