Laymans View of BCG Treatment

6 years 4 months ago #54437 by sara.anne
Replied by sara.anne on topic Laymans View of BCG Treatment
There are multiple schedules for BCG. The most common is once a week for 6 weeks, than after a few months once a week for three weeks every few months. These "protocols" are not set in stone. Your urologist should be able to make up one that corresponds to your weeks off.,,,for example, perhaps once a week for two weeks, then two weeks off then.....

Quite often the prescribed schedule needs to be changed because of uti's or other reasons. Still works fine.

Discuss this with your doctor!

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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6 years 4 months ago #54436 by Diwai
Replied by Diwai on topic Laymans View of BCG Treatment
Thanks for the prompt reply Sara. Anne,
I forgot to mention that my work schedule is 15 days on and 14days off and I am not at home for the work days this makes scheduling a little difficult.
When you talk about the Initial BCG treatment are we talking about 6 weeks in a row or with a break? and secondly the following maintenance treating is that again a weekly occurrence and for how long ?

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6 years 4 months ago #54435 by sara.anne
Replied by sara.anne on topic Laymans View of BCG Treatment
First welcome to the forum . All of us here have been where you are one way or another and so we do understand your concerns .

As you found out one of the nasty little secrets of bladder cancer is that it can and often does return . When it does this becomes worrisome and BCG treatments are the logical next step in a situation such as yours. There is a lot of information about BCG on this forum but please remember that people tend to post when there are problems and when there are no problems you don’t hear from them . I had the six weeks initial BCG induction series followed by maintenance installations for a period of two years . I have been diagnosed with both low-grade papillary bladder cancer and high-grade CIS . I am now almost 9 years past my initial diagnosis with no return of the cancer .

BCG was not the most fun experience I have ever undergone but I have to say it was very doable and I would almost rather have a BCG installation then go to the dentist . My treatments were usually late morning and the afternoon was uncomfortable but by the next day I was able to go on with my normal activities. As the treatments went on the side affects became more noticeable mostly fatigue and urinary urgency. My urologist reduced the dose of BCG and by the end of the series I was at 1/3 of the original dose . What I am trying to tell you is that BCG treatments are not something to fear and you should be able to continue with your work particularly if you schedule the appointments say for a Friday afternoon.

I would urge you not to delay them as recurring bladder cancer is not something to fool with.

Wishing you all the best

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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6 years 4 months ago #54434 by Diwai
Laymans View of BCG Treatment was created by Diwai
Firstly I have to say this site and feedback I have read to date is comforting and I thank those who give their time to helping others here.
Although new to this forum I am, unfortunately not new to BC.
Please excuse the scant details as I am presently at work and do not have access to my records.
I was first Diagnosed with BC in Oct 2009 and had a non invasive low grade polyp removed with Miomicine treatment during post-op.
This was followed with a second polyp in Feb of 2012 with the same diagnosis. In 2013 my doctor suggested that he conduct a biopsy from the bladder and upper areas of the bladder system for cancer. All came back negative.
I recently had a third polyp in Nov of this year which was removed with the same low intensity and non invasive. post op Mio was also administered. So during the last 8yrs I have had 3 Low Grade non invasive polyps the last being after a 5 year absence and have had 3month/6month Cystoscopy during the last 8 yrs.

My doctor has now said that he wants to start BCG treatments as soon as possible and I understand that this is the next step or phase in the BC treatment however I do have some concerns and reluctance to start this next phase right now. I am one year away from retirement and any time away from my employment may well accelerate my retirement date (not by my doing), I also feel that unlike many here I have been very lucky in my BC intensity in as much I have gone 5 years since my last diagnoses therefore waiting perhaps another 12 months before starting BCG and continuing 3 month Cystoscopy to watch the situation is not out of the question. Finally having read some of the BCG treatment side effects and ongoing problems I certainly would not be in a position to continue my employment should I suffer the same fate.
I realize that sometimes medical reasoning is the only option but that aside I really would like a patients point of view knowing what you do about both my symptoms and personal circumstances. I guess the $64,000.00 question is "Would you wait?

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