Non invasive bladder cancer..what now?

Believe me, Joanne, all of us have been where you are.

Do you know your exact diagnosis? You should get a copy of the pathology report if you don't already have one. That way, any advice you get from us or anywhere else will be based on a little more knowledge. IF your bladder cancer, serious as it is (and it is NOT trivial, believe me) had "risen to the level of oncology" you would be in bad shape, indeed. (Guess you can figure that this statement really got to me!)

Another thing to remember about the BCG treatments, which you seem to be handling well so far, is that should the side effects truly become too much the dose can be significantly reduced. I was at 1/3 the original dose by the time I finished the induction and then the maintenance series.

Do feel free to ask any questions you might have....

Sara Anne

Hi Joanne, and welcome to our "very exclusive" club! Sorry that you have to join us.

A few words which I hope may put things into perspective and maybe help a bit. I was stunned by your comment that your cancer "doesn't rise to the level of oncology!" I would put it another way...oncology has yet to offer much to non-invasive bladder cancer! The bladder is a very self-contained organ, and made that way to confine waste materials away from the rest of the body. Most therapeutic agents would not effectively penetrate the bladder lining at doses that would not be very toxic to the rest of the body. This is why we are so grateful to have BCG.

I assume that your diagnosis was either "high grade" papillary carcinoma or CIS? Otherwise, I doubt that BCG would have been prescribed this soon. "High grade" (and CIS is also high grade) means that the cells are relatively rapidly dividing and have the potential to spread outside the bladder (which would require removal of the bladder and/or chemotherapy.) BCG is very effective in many cases at preventing this. It is a form of immunotherapy; it is supposed to kick up the immune system, particularly in the bladder lining, to fight off the cancer.

The side effects of BCG, of which fatigue is the first and most common, indicate that the BCG IS WORKING! You are doing great...I couldn't have cycled 20 miles during my treatments for any reason (of course, I probably couldn't have cycled 20 miles anyway, but you get the idea.) The side effects, besides fatigue, often include cramping, bleeding, burning, urgency. However, these are bearable, and they do go away and they are much less than patients who do require chemotherapy experience.

As for not knowing anyone with bladder cancer, you might be surprised. Here are some statistics (probably a bit out of date) from our Home Page
bladdercancersupport.org/bladder-cancer-help/bladder-cancer-facts/statistics
Bladder cancer is the 8th most common cancer in women!

In addition to fatigue, I would imagine that you are also a bit (a bit?) depressed. That is also natural when facing something like this. However, you will do GREAT. I was where you are over 8 years ago, diagnosed with both papillary and CIS, spent two years in BCG treatments, and have been cancer-free ever since!!!

Sara Anne