Unfortunately for you and all of us, the following statement you have made is REALLY too bad. "In the face of its potential for toxicity and failure to produce the desired clinical effect in a significant cohort of patients1, including me (see next paragraph), I have no regrets over my decision to undergo BCG induction therapy and will forge ahead with BCG maintenance, if deemed appropriate by my urologist." And to you I say, good for you -- forge on.
I have had 3 different cancers and am still here to tell my tale - throughout each of them and their subsequent treatments I too have done as you state -- "I have been and will continue to wring every bit of joy out of life that I'm able". I do that as well and I continue to enjoy my life in spite of this possible recurrent threat.
Since it appears that BCG is the only treatment available to maintain one's bladder in place, that's the route we all must take. I will still be terrified. Thanks for all the input on this topic.
Amen .... bad enough to have this condition but then to allow it to steal our time in needless worry.... well to me the 2nd biggest battle is to stay positive and live like I'm still alive. U go for it. Every minute with Gusto.
BadBladd wrote: I am still rather terrified of the whole idea.
I received 6 induction instillations starting in mid-November and ending the last day of 2019 in an effort to treat high grade non-invasive papillary carcinoma.
I can tell you that for me, in hindsight, the first instillation was almost a non-event. The worst part of that first treatment was the anxiety associated with not knowing exactly what was to come and a stiff neck from sitting in the same position for 6 hours watching TV. The second and third treatments were very uncomfortable, BUT ONLY for a few hours and ONLY while urinating. Eight hours after the instillation I was back to 90% of my old self, then I went to bed and awoke the next day free of any side effects. Sessions 4 through 6 were progressively more tolerable, the 6th being as easy as the first.
It's been over 40 years since BCG was first used as an immunotherapy to treat superficial bladder cancer. Despite its limitations, to date it has not been surpassed by any other treatment. In the face of its potential for toxicity and failure to produce the desired clinical effect in a significant cohort of patients1, including me (see next paragraph), I have no regrets over my decision to undergo BCG induction therapy and will forge ahead with BCG maintenance, if deemed appropriate by my urologist.
Today I went for my first cystoscopy, post BCG induction, and a small cluster of abnormal cells (tumor) was observed. Another biopsy will be scheduled soon. Doctor said it doesn't look as if its high grade (he said that the last time also, but pathology report stated otherwise). As always I hope for the best and prepare emotionally for the worst. Meanwhile, In between having my bladder poked, prodded, and bathed in BCG (Bladder Cancer Getter) I have been and will continue to wring every bit of joy out of life that I'm able. Skiing Whiteface Mtn. (site of 1980 Olympic alpine skiing events) with grandchildren next week, Miami Heat game and horse racing at Gulfstream Park the following, and Sicily in March. I will have to fit a biopsy in there somewhere. While I can't control those slices of my life impacted by bladder cancer (TURBTs, cystoscopies, BCG treatments) I remain able to control many other things, including my attitude. Even in the face of a few minor setbacks, I still believe I'm beating cancer one day at a time.
Best of luck to you BadBladd, no matter your course of action.
While I believe in BCG and any other therapeutic protocol, NOTHING points to an optimum dosage and application. If you ruin the bladder while taking an agent which is rare, that is no good either. I do believe maintenance has proven the best protocol after an initial induction. However, everyone is different and reacts differently. Just my 2 cents.
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.
Thank you so much for your thoughts and experiences with this process. You have given me a level of comfort but I am still rather terrified of the whole idea.
"If this is your first recurrence it is very likely that your urologist may not recommend BCG right now. Particularly since it has been five years since the initial episode. If it had come back immediately he probably would react differently." Sure hope this is true.
I see you refer to my urologist as “he”. I do think the majority of uro docs are males but I have been fortunate to find a very talented and kind female - she has kept me healthy for the last 5 years and I know she will provide me with the best solution to this recent setback.
Agree with all you said. I did BCG /TURBT 4 times in 28 months and all was actually pretty mild until I developed a reaction to the BCG on session 4 of 6 last go round..... got very ill for weeks and doctors switched me to Gemzar which so far so good.... get 2nd 3 month follow-up scope tomorrow to see if returned. I actually argued to stay on BCG but with 104+ temps doctor said no way.... pointed out to him my brain fried from old age anyway to heck with temps.... he stood fast. Gemzar is a lot harsher physically and sorta eat me up a lot. Doing 3xmonth x 3weeks Gemzar maintenance right now.... T1-high grade. I totally support the BCG route if applicable and tolerate.