Looks like you have a lot of good info here. Several are very knowledgeable about this disease and treatments. Second opinions always recommended before RC. From reading here, there are many different reactions to BCG. Mine was fine for the first 6 and the first maintenance, but then got fevers and severe spasms. Remember that BCG doses can be diluted if the reaction is too severe (that is what my uro did). Good luck with your dx and treatment.
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment
I was dx'ed 9/07 with CIS Ta. After 6 BCG and two maintenance (3 each) I was clear for the past year. I did not have any bad reaction to BCG - just "spasms" on the first day (uncomfortable) and urgency - the second day - just tired. All this says is that everyone reacts differently. There is no way of knowing how you will react to BCG. After your second opinion (which is very important) if BCG is still recommended - by all means it is worth the shot! As for surgeries - only if you have a reocurrence do you have to have a surgery - the cystos are done in th Uro's office - every three months for two years - if you remain clear - then every six months.
Right now, everything seems very overwhelming for you, but after a second opinion and lots of reading you will be able to decide what is best for you.
This is a terrific site to ask questions and get a lot of support.
After diagnosis of CIS about 10 months ago I had a six-week course of BCG with minimal side effects...uncomfortable the day of the treatments and some fatigue after. Last month I had a series of 3 maintenance treatments with some relatively minor issues.
My thinking...we are LUCKY to have bladder cancer instead of some of the other "choices." While BCG is not without issues
(and there is a lot of information on this web site under BCL
Information) it is a piece of cake compared to the chemo that other patients have to go through. I know that an RC is possibly lurking out there, but that is DEFINITELY not an easy procedure to go through. I intend to continue the BCG as long as it is effective and preserve my bladder and current quality of life for as long as possible.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
11 years 9 months ago - 11 years 9 months ago#22017by Cynthia
First of all don’t feel bad about not knowing what all of the new terms you are being faced with mean, time will take care of that. If you are right and your husband has CIS and no invasion into the muscle you probably mean that it is Grade 3 and either Stage T1 or Ta here is a link to an explanation of what the pathology terms mean.
Many people do quite well with BCG they will experience some burning and urgency for a day or so after and some report being a little tired and body aches and pains. Others have more of a sensitivity to it and will have more or more severe side effects, but there are other agents that can be used and the BCG amounts used can to reduced while still remaining effective. Personally I only had a little burning for a day or so and some urgency for the same time period. As a matter of fact I would shop for the two hours that I held the BCG and drive home from Boston the two and a half hours the day after the treatment myself without a problem.
Bladder Cancer does have a high re-occurrence rate of any cancer your doctor is right. This will mean lifelong surveillance no matter what treatment path your husband chooses. That is the bad news the good news is that your husband’s cancer was caught early, more good news is that CIS tends to respond to BCG well.
One of the things we strongly recommend is that everyone that is diagnosed with blc get a second opinion for a center and doctors that do a high volume of bladder cancer. If you give us your state of residence we would be happy to suggest places close to you.
Good luck and keep us updated we are here for you welcome to our family.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
11 years 9 months ago - 11 years 9 months ago#22016by Rosemary
CIS is a different disease than I have experience with (T1 G3 tumor).
But, I do have experience with BCG. I can tell you that if your husband's bladder is inflamed now, that he may have some problems later with BCG. BCG is the treatment of choice for CIS, however, we do have a member of this forum with CIS that has only been treated with Mitomycin C and his CIS has been in remission for 7 years.
BCG treatments do not have a standard prognostic response, nor does it have standard side effects. All results and responses of this therapy are individual.
My first 4 treatments with BCG were a piece of cake. After the 5th the burning and bleeding became increasingly worse with instillation. After the 12th treatment, I developed a severe psoritatic arthritic condition and had to discontinue treatment.
Some people have variable side effects and some have none at all.
Best of luck,
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
I may have it wrong I know they graded his cancer stage 3 but uro also said it was not in the tissue as he had suspected and we were all shocked. Gator is just wondering about how bcg makes you feel. That is what uro is recomending but Gator doesn't want to go thruogh abunch of painful treatments and surgeries just to have the cancer come back. The TURB experience was scary because coming out of surgery he couldn't breathe. Then at home he had alot of pain and after removing cath at home he has had burning still at 2 weeks. He has no infection and the burning is going away with lots of clear fluids. He just has lots of ??????? Thanks for your reply:)