BCG question

[Ses]

Hi all. Thanks in advance for always being there. I have had one six round BCG session and two three round BCG sessions. I am scheduled for another round in December, assuming that scope is all clear. Each round has been about 3 months apart. My doc says my next round of BCG will be my last, again assuming an all clear scope. I have read of BC patients continuing with BCG, though at longer intervals, for several years. When I asked my doc about this he said as long as everything stays clear there is no need to do BCG beyond one year. When I pressed him further, he said there is nothing to show that extending the treatments for longer than one year would be beneficial. I trust my doc, but it seems like I have read of others going longer. What do you all think? Is one year enough? My tumours were T1G3 noninvasive. No recurrences, but it has only been about 9 months into this journey.

[Brian]

personally i had 1 chemo mitomycn c got the all clear. then had 1 round of 6 bcg treatments & have been cancer free for 13 months from the last bcg treatment & 16 months from the mitomycn c treatment. expected to do maintenance treatments but the uriologist did not think this was warrented. in my case it was less than a year but it probably will go on an individual basis. brian

[Jack Moon]

Hi Ses

There does not seem to be an agreement by all Uro’s on the exact number of BCG maintenance treatments. Some Uros do not even believe maintenance treatments are warranted.
The Canadian Urologist Association’s latest paper written by members of our medical advisory board recommend a 3 year maintenance program if the patient can tolerate with full or reduced levels of BCG. Three weekly treatments at 3, 6, 12, 18, 24 and 36 months.
My personal maintenance program was 12 monthly treatments which has worked so far as I will soon be 5 years all clear.
So as you can see there are variations and time frames.
All the best,
Jack

[marysue]

I was TaG3 both times with the first having several tumours and the only recurrence was 20 months later with a single tumour on the top of my bladder. My first uro prescribes 6 weeks and then if you have a reoccurence then you do another 6 week round plus one year maintenance. I asked my new uro about this and he generally follows the same idea. He likes to see people do up to three years if possible but is OK with one year. I worked it out at my last cysto had my first uro ordered the three years maintenance on top of the original 6 weeks and if I had been able to get through it with no reoccurences I would have completed 24 treatments over a 3 year time period. Instead I did 2 6 week sessions and one year of maintenance which was 3 sessions of 3 weeks each for a total of 21 treatments. I was getting to the no tolerance stage so I told my uro I was done after finishing the 12 mth maintenance in January. Because the total was close my uro agreed that I’d done enough. I did read somewhere that 6 weeks of BCG alone is about 60-70% successful and if you do one year of maintenance on top of the 6 weeks it goes up to 85-90% success. HOwever that being said your tumours were T1G3 versus my TaG3 so whether that makes a difference I don’t know. I suggest asking your doc what the next step would be if you did have a reoccurence. If he starts talking bladder removal then maybe that would be a case for asking about more BCG if you can tolerate it.

[Greg]

I too presented with T1G3, had 6 TURBTs and 34 treatments of BCG, Mitomycin C and Gemcitabine over a 2 1/2 year period. The tumours grew back, not every cysto, but most and finally went muscle invasive. I would personally not consider cystectomy unless muscle invasive occurred, but some do with recurrent T1G3. Knowing now what I do following my cystectomy, I would personally resist it as long as possible. But not all feel the same way and I respect that. I never found the treatments all that bothersome so I guess that helped me want to continue that course as long as possible. But I did follow my doctor’s advice which is key; if you can’t do that, it’s time to get a second opinion – which I also did at the muscle invasive stage. The uro’s I have spoken with prefer the maintenance route where possible and tolerated as long as there is no muscle involvement.
Greg

[Ses]

Thank you all. I have asked what would happen if there was a reoccurrence. He says that he would do another treatment but with another medicine, I assume valstar but did not ask. He has also told me that with my current BCG treatment there is an 80% success rate.

[KIOWA]

I had BCG once but it made me so sick I decied I would have nothing furtehr to do with it. As it turned out it didn;t work anyway. Whhcih is good becase no way was I going to keep doing it. I do recall my doc telling me he as a time frame for BCG and I believe it was such that it did not go over 12 or 18 months. There is still a lot of flux around the BCG matter but I would say if you really trust your doc and you stay free of BC thre would be no point in contiinuing. Others, as you know, have continued for long periods. One thing I find missing in the research is a clear comparision of whther those who stay on stay clear and those who do not stay on BCG may get more relapses. This kind of comparison would be be very difficult to do and the number of sample would be very low, thus the research really is silent in this regard. So my thinking is that we really don’t known. My doc’s position is that most people give up on BCG so he wants it to work and get it done and over with in a reasonable period of time. His own findings are that it likely does not help to stay on it for years. I personally would tend to agree with your doc on this. Keep in mind that BCG and BC are highly variable and there are a number of different thoughts on it. I for one would not do it for more than a year or so even if I could have done it. My doc’s concern is that many people get so tired of the BCG they just quit it and also quit seeing their doc for follow up and he sees that as a bigger risk than continuing long term BCG when it may not actually be achieving anything. I am glad I at least tried it but BCG is not my favorite thing but it is about the best treatment for low stage BC.

Kiowa

[marysue]

I too, wouldn’t have gone for more than a year on BCG. LIke many drugs it is very toxic to the system. In addition to the usual flu like symptoms, I had severe headache, muscle ache and joint pain, constipation, digestive upset, horrible horrible night sweats (soaking sweats 3-4 times per night) not to mention brain fog, fatigue and of course bladder pain and spasms. I also found that I was depressed too. Everything wore off as treatments finished and I feel great 9 months post BCG. I am currently 4 years cancer free for the original 5 tumours sites and 2 years cancer free for the reoccurence site on the top of my bladder. I did the second 6 week round plus one year of maintenance after the reoccurence. When I was at my cysto last week I asked my uro if BCG can be considered a cure for BC. He said yes and no. Some people he said do get cured and some have a so called break from BC (remission) where it is gone for months or even years. He said in those people it helps prevent frequent reoccurences and slow down the possiblity of it going invasive. He did say however it is impossible with each patient to tell whether you are actually cured or not, only time would tell. He does prefer the 3 year maintenance route and is flexible about dosage but knowing I had done nearly the equivalent of 3 years of treatment already and the severity of my side effects he was OK that I said I was stopping after 1 year maintenance. One thing I have noticed from comments on this site is that people that tolerate BCG well at first seem to be able to do so up to a point and then bam! their bodies rebel and say enough is enough. My advice to anyone is to take it one treatment at a time and if the side effects are going over the top talk to your doc and make an educated decision about whether it is best to stop or try to continue on with the aid of accompanying drugs to lessen side effects. It is a very personal and individual decision for each of us. I believe that I have done enough to consider myself cured and by accompanying the treatment with a good diet, exercise, vitamins and supplements, yoga and acupuncture I’ve done everything I can to give my body the best chance to recover and stay cancer free.

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