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BCG Side Effects.....Fatigue

1 year 8 months ago #54913 by Joanne2
Honestly I'm a little taken aback. I assumed that since it was the same that it wasn't any more to worry about, according to my doctor. Now I'm pretty scared. I will talk to my doctor at my next appt. I don't know what to do now. Thank you Sara Anne.

Joanne

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1 year 8 months ago #54912 by sara.anne
Absolutely. You don't want it to become high grade or invasive. Once it becomes apparent that it is not gone for good you need to act. It won't remain low grade/non invasive forever.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 8 months ago #54911 by Joanne2
Even though it's still low grade non-invasive?

Joanne

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1 year 8 months ago #54909 by sara.anne
If it were I and it came back a second time, I would seek a 2nd opinion at a teaching hospital or bladder cancer center. I would want someone to look at the situation who has extensive experience in treating difficult bladder cancer cases.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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1 year 8 months ago #54908 by Joanne2
Thank you so much for normalizing this Sara Anne because it doesn't feel normal. I really need to hear this. What would the next step be if it comes back yet again??
Joanne

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1 year 8 months ago #54903 by sara.anne
Your side effects with BCG are typical. And they do increase with continuing administration. Your body is reacting to the stimulus to the immune system, and this is what you WANT to happen. I remember that the bleeding/cramping for a day after were much like periods used to be. The fatigue will disappear, but it does take a few weeks. These side effects are nothing near what you might experience if you needed traditional systemic chemotherapy.

BCG is usually used for low grade bladder cancer if it returns after the tumors have been removed. A "failure" of BCG is if the cancer returns. Yes, the 3-month check-ups are critical to catch any return as early as possible, but if it does keep returning something else needs to be done. This indicates that the situation is very unstable and it can "go south" or turn high grade or invasive.

If the cancer returns yet again you need to have a frank discussion with your urologist as to what your options might be.

Sara Anne

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