Bladder Cancer Support Group

Yes, I ws diagnosed 1-06. Had three transurethral bladder tumor resections that year, and then started BCG every 3mos(6 in arow), then, in my second year, I was scheduled twice to continue BCG the way you do, every 6 months(3 in arow) with 3 month cystoscopes in between. I have not to date gotten to do this. Every time we get ready to begin, I have to have more surgery and biopsies. Last one 1-10-08, prior to that 11-16-07. Have not been able to continue BCG, but am hopeful- there has been talk of more aggressive treatment. I pray to go back to where you are(not sooooo bad) Hope you are feeing ok. I have two boys-9 1/2 and 14. It is really difficult for our entire family.

I was told it was a good thing they found the cancer when they did or I could have lost my bladder. My doc said that BCG is only effective for three years and is the best thing on the market. There has been times when I haven been unable to do the bcg when there is trace blood in my urine. I have never had any tumors removed and I am sorry for what sounds like a very difficult time you are having. I also have IC a bladder condition which over shadows the cancer and sometime I wish I didn't have a bladder but then I am gratful because if I did not have IC they would not have found the cancer. I have 2 girls and 2 boys only the 13yr old at home, he is what keeps me going. Thank you for your reply.

I have just joined this support group today. I was diagnosed with bladder cancer three years ago. I have had a long history of cancer, beginning with endometrial in 1985, followed by 5 skin cancers. I have begun to feel very depressed. My oncologist keeps telling me that I am a high risk cancer patient. He says that my age precludes certain treatments. I went to Sloan Kettering for a second opinion. They were much more encouraging. I had BCG treatments every three months for two years. This was ordered by the chief of the Urology Department. Only because a nurse stopped the treatment until she could check with the new oncologist, did I learn that this was not the correct protocol. According to the nurse, "they burned the hell out of your bladder".I know I should feel glad that I'm still alive after all this, but lately I just don't. I am 71 years old.

My ex-husband has had this procedure done, and it has worked well, unfortunatly the cancer has spread to his Lymphatic System, but his Bladder is cancer free. His Urologist did state that it was a harsh treatment on the bladder, but worked well for aggressive types of Bladder Cancer.

There is a new study out with a drug called EOquin. They want me to join the study. As far as I know, what I read from the scientific papers, it"s a drug causing no side effects because it's not absorbed into the bloodstream or bladder wall. I will talk to the oncologist soon and I will have more answers. Anybody involved in this study? They have now the third run before approval by the FDA and it seems
promising.

This is the preferred treatment for low grade non-invasive BC. BCG (Bacillus Calmette Guerin) is a live but weakened form of the TB bacteria. It is safe when used properly. Itdoes not have TB in it, it is a weakened TB bacteria. I have heard of no problems with it except on very rare occassions and this treatment has bee used since the mid 180's. Follow the guidelines and you should have no problem whatever. Sometimes docs will give Ianiazid (an anti TB drug) for a few days after BCG instillation. The BCG only needs 2 hours to have its effect and it does not get in the blood stream. It should not be used though if there is an infection or after surgery of the bladder. After voiding (sitting down if male to avoid splashing), washing genitals and hands fully after voiding and putting bleach in toilet for hall hour after urinating and avoiding sexual contact for at lest 24 hours or as much as a week should avoid any contamination. It is rare for you anyone to get TB from it if precautions taken, especially the first 6 hours. It is not systemic, tht it is is instilled in the bladder and contained there. I have heard heard of very very few cases of getting TB from it and those were in cases where no cleanliness was used. The protocols vary, typically it is 6 weekly treatments followed in w months by a cystoscopy. If clear then a round a 3 weekly treatments followed by a cysto in 3 months. SOme docs do not go further than this but many do and itis common for the "boosters" to go on for longs periords of time but with the intervals spread out. Bcg does not work for every one and it is about 40-60% effective. But it is the things that works the best at this time. BCG with Interferon can be used, and there are instilled chemo agents that can be used. I have had 8 weekly instillations for my CIS (Cancer in Situ) a highly aggressive BC ,stage TCIS and high grade. BCG is not used for muscle invasive cancer. The best treatment for that is radical cystoprostatectomy. Sounds like your uro is using standard protocol. You need not be concerned about it. I put my bathroom off limits for 24 hours, use the bleach, wash my genitals and hand after urinating. Make sure the toilet lid is closed and both doors are closed t prevent pets from getting in. Actually these precautions are probably excessive but worth the effort.

I was diagnosed with CIS bladder cancer. Had my 6th BCG treatment last week. Will have another cystoscope the end of October. The 5th treatment was horrible. Was in pain and bleed for four day and passed major "chunks" for those four days also. My doctor not only said this was normal but was happy. He said, "with what I was going through means it was working" From what I understand at the end of October, if after the scope it shows it is working I will have 3 more treatments this year and will continue off and on for up to 36 months.