Excellent news. I think the initial fear of bladder loss is very common for all of us - that was my first question to my doc. The side effects of the BCG wear off over time. Please keep in mind the doc can lower the dosage of the subsequent maintenance treatment to mitigate side effects with little overall negative consequences (about a 2 % difference in 'no evidence of disease' at the five year mork.
I did not realize this until I had to terminate maintenance - so use this to your advantage.
Again, congrats on the clean bill of bladder health.
I was scoped yesterday after a seven week layoff following my sixth bcg. My turbt was for four large high-grade malignant nonmuscle invasive tumors. My doc said everything looked real clean with no inflamation and no recurrence of tumors. He was very pleased. Me too. I congratulated him on a job well done. Now he's sending me out for more urine labs and I go back in three months for another scope and then I get scoped every three months for a while. All of my symptoms, except for occasional urgent urination, are gone. Sometimes my urine is actually clear as opposed to dark yellow or brown, and it keeps getting better. I am now hopeful that losing my bladder won't happen. Thanks for your advice and help. I am in shock today. Science is a wonderful thing.
Congrats on getting your initiation phase over with - and all my best with the next scope.
I have noticed others reporting arthritis like pain here on the forum, so definitely mention to you doc.
I have not suffered from this, but have had a multitude of other side effects from the BCG, make sure you are talking with the doc and ask about reductions in dosage for you maintenance phases to reduce the hip pain.
The research shows only a 2% difference in 5 year outcomes with reduced dosages so don't be afraid of having the discussions - you are ultimately in control of your treatment.
We are with you in spirit and look forward to hearing about the results of you next cystoscopy.
3 months 3 days ago - 3 months 3 days ago#60015by Alan
Glad you have completed a round of 6! Yes, the biggest reason for a scope is to check to be sure there are no tumors. Also to check the general view such as inflamation which is often found. As far as arthritis. There have been some posters that feel the BCG has caused a flare up. This would make since as this have often been linked to immune issues and that is what BCG does....revving up the immune system. This is something to mention as well as any other issues on your check up. The good news is you are on the way to beating this!
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.
Yes, the cystoscopy would be to see if the BCG has been effective. The initial course of BCG treatments usually lasts 6 weeks and then there is a check cystoscopy.
Do discuss the pain in your hips with your doctor, especially if it is new. Arthritis is a relatively uncommon but possible side effect of BCG. If you and your doctor decide not to continue with additional BCG you will already have gained significant good from what you have received. And there are other options for additional treatments if your doctor decides that is necessary.
Congratulations on finishing the first course!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society