Hello, Sue. Sorry to see you here, but glad you found us.
First advice: (and hard to follow) TAKE A DEEP BREATH. When I was diagnosed, 8 years ago last month, I just knew I was going to die!
Well, I didn't! I was diagnosed with CIS and had BCG and BCG maintenance, and am doing great....no signs of bladder cancer.
BCG will not give you TB. It is a modified bacterium, which was developed many many years ago as a safe agent to use in vaccinating infants and children. It is the most effective agent known to treat high grade bladder cancer, ESPECIALLY CIS. You can find statistics all over the map for % effectiveness of BCG, but the thing to remember is that MOST OF THE TIME IT WORKS.
Yes, there are side effects...usually fatigue and after multiple treatments bladder irritation and discomfort. Serious side effects are very rare. Thank goodness BCG is available. It is a very do-able treatment, and not anywhere near what patients undergoing chemotherapy have to deal with.
IF BCG should fail, which it does in a minority of cases, bladder removal is the only option. There are many,many people who post on this Forum who have had their bladders removed and who are living full lives....scuba diving, dancing, race car driving. None of us want this, but it is not the end of the world. And the odds are that you will never face this.
Please feel free to ask all the questions you want. We were all where you are once.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I haven't actually been diagnosed yet but I am fearing the worst. After two cystoscopies under the NHS (here in England) which didn't reveal a cause of blood in my urine I paid to see a specialist in London who found a suspect area straight away. If it is cancer then it is CIS in the trigone area. He has also biopsied random other areas of the bladder. I am awaiting biopsy results and as I fear the worst I am trying to find information out and prepare myself for what may lie ahead.
I have read that BCG doesn't always work... what % of people does it not work for and what happens then - is having your bladder out the only treatment?
Also - I did not have the TB vaccine as a child - does this mean that I will get TB if this BCH treatment is attempted.
Sorry I sound do naïve about this. If I should have posted this differently please let me know as I am totally new to forums.
Thank you to those who have set this site up - need somewhere to turn to.