Well, I consider that GOOD news. Where did you get the idea that BCG is incapacitating? The side effects of BCG for most people are several hours of cramping and bleeding and urgency and then some fatigue for the next day or so. I was certainly able to go about my normal life the next day and most people do. Of course, there are always the very small percentage with adverse reactions (have you read the warnings on an aspirin bottle or that come with your flu shot?)
I was diagnosed with CIS almost 9 years ago, did the BCG and BCG maintenance over a two year period and have been CANCER-FREE ever since. I had worse side effects from a minor opthalmology procedure that from BCG.
Compared to the type of chemotherapy that many advanced cancer patients have to undergo this is a walk in the park.
The alternative, with CIS, can be a death sentence. We are so lucky to have something like BCG.
You can do this!!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
2 years 10 months ago - 2 years 10 months ago#54137by moorpheus
After being told the suspected 12mm nodule was a granuloma, surgery will go on as scheduled.
I spent my time perseverating on studying all I could on both Carcinoma In Situ and BCG trying to figure out my future. Wondering if I want to have the BCG treatments and if so, for how long. They seem incapacitating and could seriously interfere with my quality of life. And if so, why bother? Life is rather meaningless at this point without teaching (I teach 4 nights a week and two afternoons, plus subbing) and I'd just cost money for what?
Examining my life. Time to get rid of all my "stuff" cuz I'll never need it.
After they remove the cancer from my bladder, then what?
I’m age 64 male in great health and I had 2 bladder resections (TUR) about 17 and 20 months ago for 2 non-invasive superficial lesions ... that was followed by 6 weekly TICE BCG treatments of 1 hour each, then 3 months later 3 more weekly, then 3 months later 3 more weekly, then 3 months later another 3 weekly, and then 6 months later (now) and I just finished the 3rd of 3 weekly. In 6 months, I’m scheduled for another 3 weekly BCGs. We haven’t seen any lesions for over 6 months so, it’s looking good so far! Experiencing a slight bit of incontinence today (only 1 1/2 days following this recent 3rd of 3 BCGs) but I expect my bladder to stop “freaking out” over the next week. Good luck to you all but also consider the following that I have done to supplement medical efforts:
1. Healthy eating ... more veggies and green leafy vegetables, carrots, etc. and fruits! And less red meat and processed foods. SALAD IS THE MAIN COURSE! Exercise regularly and adopt healthy lifestyle.
2. Keep attitude very positive ... enjoy and BE the positive element (avoid the negative, griping, blame, and anger). Be kind and giving to others and just “happy to be here!”
3. Watch more happy movies and comedies ... laughter and joy are the best medicine.
4. Take the following vitamins & supplements: Oncovite, Centrum Silver, 81mg aspirin, Magnesium, and Fish oil.
5. Continually educate and update yourself about your illness using legitimate online sources and ask your doctors questions to help you understand it and all the possible treatments.
My doctor said worse case is I’d lose my bladder but I won’t die from the bladder cancer ... this was very reassuring ... so, stay calm and use your brain to its full potential.
For me the TURB was almost a non event. Some cramping, light bleeding but, I was doing active things the next day. Everyone will experience different results just on our individuality and how big the cancer is. I had papillary (mushroom like) whereas you CIS is a flat "rash like" type. Both are common. Both are often treated with BCG. For most it is tolerable and mild in reactions. It is doable and certainly better than chemo. I called it being "uncomfortable" not really painful. TURBS are often done a second time to be sure "margins" are good to be safe. Let us know how the scan goes and now I wonder will they do a biopsy of the nodule at the bottom of the lung? Here's trusting it is something simple like a cyst!
Please continue your educator's passion! That is the best therapy!
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.