Questions and venting

Jodie, I will try to answer your questions. There are multiple protocols for giving BCG, but the "usual" one is to have 6 instillations, a week apart, for 6 weeks. Then about three months later you have three more, and this repeats for a total of about 2 years. It has been shown that the maintenance regimen improves the outcome, especially with CIS.

Mitomycin is often given in the rare cases where a patient cannot tolerate BCG. Now, with BCG in short supply, it is being used instead of BCG. It is not as effective as BCG, but is a good substitute.

The side effects of BCG tend to increase over time as the treatments continue. You are trying to stimulate the immune system in the bladder and the side effects indicate that this is happening. The first that you generally notice is fatigue a day or so after the treatments. Burning when you urinate blood in the urine, and "having to go" are the most common. If the side effects become too severe, the dose can be drastically lowered. By the time I finished I was on 1/3 the original dose and even 1/10th has been shown to be effective.

Dr. Donald Lamm is one of the pioneers of BCG and his web page gives a lot of information. His schedule of treatments is not quite the same as the one most of us have had. But it is interesting to read.
www.bcgoncology.com/treatment/bcg.html

My checkups have been cystoscopy every three months for two years, then every 6 months until the five year mark, and NOW once a year. Every five years my uro wants to do a CT urogram. Of course, if a "bad" spot appears, a biopsy is indicated.

As for diet, as in all things, moderation is the key. Whenever I hear of someone going on a special regimen (juices, paleo, gluten-free) I fondly remember the number of times my father sat down at the dinner table and said "what are we not supposed to eat today?"

Sara Anne

Oh Jodie, I am so sorry that you are facing this. First a little background....I really do not understand those statistics either. I was diagnosed with CIS over six years ago, did the BCG and the BCG maintenance, and have been cancer-free ever since. I am now on one year checkups. Yes, it does have a reputation for coming back, but from my years of experience on this Forum it does not appear to be anywhere near the rate you quoted, and that I have read also.

Second, I applaud you for trying to live a more healthy way. However, it is important to remember that a. other than smoking and a very few other things we do not know what causes bladder cancer; b. something has gone awry with the immune system in the bladder lining and whatever it was most likely began YEARS ago...so that a sudden change in diet cannot change what has already occurred. It is possible that there is a genetic issue? That a "stray cosmic ray" passed through the bladder (I am teasing, here)? There are some interesting scientific discoveries about the types of cells that lead to bladder cancer ...several of which are reported here in the Forum under "Articles of Interest"....but none of them lead us directly to cause/effect/cure.

One of the GOOD things about a lot of bladder cancer, especially CIS, is that there is a treatment that is effective in many cases...BCG. It is very do-able. There is some discomfort (I would rather do BCG than go to the dentist) BUT it is no where near what the systemic chemotherapy that many cancers require. It DOES stir up the immune system in the bladder lining and enables it to fight off the cancer cells.

You have nothing to lose and everything to gain. I am so glad to hear that you are having BCG. I am sure that you will have many questions about it, and there is a lot of information in this Forum about others' experiences with it. Remember...we are all different. Please feel free to ask as many questions as you wish.

Good Luck

Sara Anne