Well I had my first treatment today and It was not all that bad. I am very tired but otherwise I had a good experience. I listened to everyone's advice and did what they said and it worked. I really appreciate having this to be able to vent and to learn. I brought pose pads just in case but didn't need them. The people at the office and the dr was so nice and I was in and out in 15 mins. I just hope the rest are this way.... Thanks again everyone for the help.
I am currently on my first "maintenance" schedule of BCG - went through the original protocol following 2 TURB's last summer. As Sara has well-stated, BCG is not fun but is one hell of a lot better than what many, if not most cancer patients will have to go through. I chose this option because I very much want to be cancer free (which I am today) while keeping my bladder. For comfort after the treatment, look for ways to help with frequent urination and burning while urinating. I understand that all of these things are the same for men and women alike. It might be advisable to wear depends underwear to the treatment appointment because you may need them on that 45 min. trip home. I can't keep the BCG in my bladder for longer than that. Doctors never gave me that advice and I almost ruined a leather car seat on the first trip. Perhaps one day I will laugh about that. Also ask about pain medicine for the "burning" pain that may accompany urinating following BCG. I know that the intensity of the pain differs between patients, but it is substantial for me and I am determined to get through the treatments so I do have some pain meds and I am interested in hearing from others about what kinds of meds they may have for this. I was told by the Urologist that the side effects are cumulative and have found him to be 100% correct. Following my first BCG "maintenance" appointment this week, the pain became excruciating later in the day, and 2-days later it still burns but not as bad. I find it really helps to know what to watch for so these things will not come as a scary surprise when and if they develop. That is one reason why this forum is so important! Welcome to the club - you have a lot of friends here.
Sara.Anne... Thank you so much for your help. I have also read other post of yours and it is helping me so much!!!!! The only thing that scares me now is that I live about 45 mins away from where the treatment will be given. I hope I make it home.... I didnt sleep very well. Thanks again
Hi! I am just a bit older than you - 54 - have a new grand baby on the way too and have a lot of life to live. I am sending good wishes your way. I think the best thing about this forum, other than the information and knowledge, is knowing you're not alone. Hang in there! Lelly
Take a deep breath! You will be fine. BCG is the best treatment, particularly for high grade bladder cancer. I was diagnosed with CIS a bit over 6 years ago, did the BCG and the BCG maintenance and am still cancer-free. Was it worth it? WHAT DO YOU THINK!!
Of course, everyone is different in how they react. I live about a 20 minute drive from my urologist's office and I drove myself there and back. The first few hours after the treatment are not particularly fun...you may have some bleeding, you WILL have urgency and have to urinate OFTEN. Don't plan to be far from the toilet!
The next day you should feel "nearly" normal. May have some burning with urination, and maybe some fatigue. I was always able to carry on as usual, but was aware that I wasn't really 100%. Some people find the fatigue difficult.
You should be aware that the side effects tend to increase as the treatments continue. This is because the BCG is causing your immune system to kick up, which is exactly what you want it to do. If the side effects become too much for you, the dose can be reduced significantly and still be effective.
We tend to recommend second opinions here quite often. In your case, it depends on several things. Where are you being treated? Are you comfortable with the doctor and his staff? It sounds as if the treatment you are getting is "right on" for you case. However, should the cancer reappear after you have finished the BCG treatments, it might be a good idea to seek a second opinion since you will have to consider multiple options at that point. However, we will be optimistic and assume that it will NOT come back!
BCG is not particularly fun, but it is a heck of a lot better than the chemotherapy that many cancer patients require. I tend to describe it as like going to the dentist. I prefer BCG (but then I am "dentist-phobic" in spite of the fact that my husband was one!)
Good luck to you
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society