I was diagnosed with bladder cancer in 2014. I have had so many cystos and biopsys and TURBTs that it is second nature to me. I have non invasive tumors that have recently become more aggressive in their growth. Seems like every 3 months when I go for a cysto I have a tumor or a spot that is forming a tumor. My last appt. was last week, and my Dr. said I have two small spots that look like the start of a tumor. I told him I would rather wait till March and see what develops because my insurance is not that great and I am still paying for last surgery. He said that after my next surgery he is recommending 6 weeks of BCG and then once a month for TWO years. I had it in 2014 for 6 weeks for not for 2 years!! I am worried what it will do to my bladder. I already haves issues with controlling my bladder. I am afraid of having to have my bladder removed, I am afraid of it spreading, I am afraid period. It is hard for me to talk to family and friends because all they say is, "You got this!"....I DON'T have this and I am scared. I am 53, the youngest patient with bladder cancer at my dr. I just needed to vent. Anyone that has done the BCG for a long period of time, please let me know your thoughts on it--thanks in advance!!
I would certainly listen to your doctor! Sounds like he/she is on top of things. BCG has proven to be very effective for a good number of us. Going through another bout is no fun. If your bladder is rebelling many have reported success with lower dosage at 1/2, 1/3, 1/4 even 1/10 strength. You may want to discuss that option. Hang in there. Venting is part of this process and that is why this forum exists.
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.
So sorry to hear that you have been fighting this for so long.
BCG is the treatment of choice for high grade non-invasive bladder cancer or for low grade bladder cancer that keeps returning. I assume that your diagnosis was high grade and that is why you received BCG in 2014? The current standard of care recommends an initial 6 weeks of BCG, and after an "all clear" a program of maintenance BCG every three months for up to two years. This has been shown to significantly increase the effectiveness of the BCG. I wonder why you didn't have maintenance BCG back then?
Many, many of us here on the Forum have had this or a similar sequence. I was diagnosed with high grade (CIS) in 2008 and had BCG and BCG maintenance then. I have now been cancer-free for over 10 years. I had a lot of bladder issues with burning and urgency that my urologist said were due to the CIS. Yes, the BCG was not a fun time, and as the side-effects increased (which indicates that the immune system is "kicking up" which is what you WANT to happen) we decreased the dose. I was on 1/3 the original dose by the time I finished (it is possible to reduce it, if necessary, to 1/10th.) AND once the treatments were over my symptoms of urgency and burning were gone also.
In cases of high grade bladder cancer BCG can be life-saving. If you use the SEARCH function at the top right of this page (just click on SEARCH) you can find many posts on BCG from patients who have had it. Yes, there are side effects but the result is very much worth it.
You DO have this!!!!
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Thank you for writing a positive post xx I am in UK and have just had 4 treatments of bcg for cis bladder cancer ...2 more for the course .. I have been so anxious about the diagnosis as I really didn't think anything was wrong but gp luckily referred me to urologist.. I am sometimes so negative and can't believe that the bcg will work then other times I'm very positive...you have given me a big lift thank you ...I am 65 years old xx take care
FYI, the current protocol for treating CIS in North America is at least the completion of the 5-6 weeks of the BCG induction course, which you are being treated with, plus 2-3 weeks of the maintenance course after 3 months of the induction course. The BCG treatment is known to have an enduring effect, especially on CIS. Dr. Ashish Kamat of MD Andersons Cancer Center in Texas points out that based upon a clinical study, the complete response rate of the BCG treatment for CIS was 55% upon Cystoscopy 3 months after the completion of the BCG induction course, but the complete response rate improved to 84% after the 3 weeks maintenance course. Even without the maintenance course, the complete response rate improved by 10-15% by 6 months. This protocol is not explicitly mentioned in the American Urology Association (AUA) guidelines for non-muscle invasive bladder cancer, neither it is mentioned in the European Association of Urology (EAU)guidelines. I do not know the protocol in the UK if it includes cystoscopy at 3 months after the 6 weeks induction course. What Dr. Kamat is saying is that for CIS-only patients, continue the 3 weeks maintenance course even if a recurrence is found at 3 months after the 6 weeks induction course rather than starting alternative treatment such as Mitomycin treatment, which is often administered to BCG unresponsive patients in the UK.