Welcome to our exclusive club! However, we are also sorry you are here. By the fact that you have had success with BCG in many treatments and no cancer cells found I would not worry about continuing with your bad side effects. There is no "perfect", "complete" or "exact" protocol on usage. In my case my URO did 6 with a 6 week wait then another 6. What/which is best? Who knows. All I know is both you and I are free of this disease which is something to rejoice in. While it does have a bad habit of coming back I'd just be sure to have your scopes on a regular basis and continue your life!
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.
In June of 2015 I started BCG treatments for non-invasive bladder cancer, I did six treatments without any horrible side effects. Some burning upon voiding and feeling a bit tired as the sixth treatment ended noticed more fatigue than previous. Six weeks later had a cystoscopy no cancer cells present. Then had three more rounds of BCG and a cystoscopy with positive results for cancer cells. Had another round of BCG another cystoscopy no cells found. In the fall of 2016 started another round of BCG had five treatments then terrible side effect or so I think. Started with a pain in the lower back radiated down my leg, settled in behind my knee, leg terribly swollen. i ended up in hospital did any ultrasound of the back of my leg checking for a blood clot none found. I was told it was cellulitis with an extremely large Bakers cyst. I ended up off work for six weeks. I was never able to get the last BCG treatment due to my health. Finally recovered the end of Feb 2017 started another round of maintenance BCG treatment (3) received all three and one week later the same side effect have started. Leg again is swollen just had another ultra sound done have to see my family doctor tomorrow, My URO said no more BCG treatments will do another cystoscopy in three weeks. Now wondering what type of treatment options are out there. Luke 32 A