Seeking serious treatment advice

And There You Have It!!!!!

While we all understand your fears, We won't allow you to "Give Up!"

I would have LOVED to have had BCG treatments! They found mine too late and I had to have my bladder removed. Our friend Mike opted to have his bladder removed after a reaction to BCG. (But that is unusual)

If you are at a respected Dr.(And from what you say, he is following protocol)he will propose a 2nd opinion, just to be sure.

I know the small side effects of treatment are a pain in the a** for sure, but I have them too, and find them a small price to pay for life!

We do have something in common though. One year after my surgery I had my hip replaced. I too thought it was something connected to the cancer and, BOY, was I worried. But it turned out to be just plain old Arthritis and an active life. Just plain wore it out!

Please don't let this cancer let you do make poor decisions about your future. Sometimes living can be tough. Who cares about the minor inconveniences of treatment.

Choose the right treatment that saves your Life!!!!
Some on this site have had 2 or even 3 cancers, and they won't give up! Please don't make your case any harder.

George

You came to the right place for information on Bladder Cancer and treatment. I was also told I had aggressive bladder cancer, good news it was CIS very treatable with BCG.
I had 24 BCG washes and this past year had my 5 year mark cancer free. I am not going to kid you, my body reacted to the BCG with some side effects, but that is exactly what you want from the treatment. I always kept my eye on the big picture, the BCG was working and encouraging my own immune system was stopping the cancer! I agree 100% with Sara and Alan, BCG is the way to go with CIS.
Good Luck,
Nancy

Hello,
I was recently diagnosed with High Grade Bladder cancer which was negative for Lamina propria invasion and muscularis propria was represented and uninvolved by tumor. I was told for bad news that the good part was no muscle invasion. I guess the cancer was considered still within the walls of the bladder. Also Lymph-vascular space invasion was not identified. Told good news considering you have cancer. This I wonder.

Shortly thereafter, I had a TURBT and the results were Muscularis Propria is represented and is uninvolved by tumor but that I had Severe Dysplasia. Told still pretty good news and treatable with BCG treatment.

Last week I had my first BCG treatment. Went to the Dr's office for 15 min - had the BCG placed into bladder told to go home, rotate of one hour, hold the fluid in bladder for 2 hrs which I did. Then told to be very cautious and put bleach in toilet - let stand for 6 hrs and dispose of anything else, i.e. urinary napkin, very carefully because the BCG is Highly contagious. I did what was requested.

Here's my dilemma. I am considering stopping all the BCG treatment and I need to know if what I'm considering is sound.

Background
In 2006 I had prostrate cancer had the prostrate removed instead of going through numerous other treatments. Seemed to be better to remove the cancer than take a chance. I was monitored for a few years to make sure my PSA do not increase because if it did the cancer had escaped the prostrate. All seemed well.

2012 I have High Grade Bladder tumor which is removed and I remain with Severe Urothelial Dysplasia. The recommended treatment is BCG for how long?????? From what I read I could have numerous treatments for many years trying to suppress the Dysplasia before it turns to cancer. They don't think the prostrate cancer and bladder cancer are connected. However, I personally know someone that had prostrate cancer - told they got all the cancer when they removed the prostrate and a few years later had cancer in his shoulder that was connected to the prostrate cancer. After all cancer cells can move around in your body and land anywhere.

My Dr. made a funny remark that makes me question all this BCG treatment. He said he never heard of anyone having more than two types of cancer. So I guess he thought that was a good thing that I'd probable never develop another type. Seemed odd to me at the time.

Well if I continue on the BCG treatment they will be going in and out of my bladder a number of times and each time I'm subject to infections and weakening my kegel muscle. And after all this treatment I may end up with the removal of my bladder just like they did the prostrate to try to keep the cancer from spreading.

All this BCG treatment may or may not work. For sure on incontinence problem will increase. I had this under control after the prostrate surgery but it took years. After one bladder removal followed by a TURBT my incontinence problem was worse that after the prostrate surgery. The Dr said all will go back to normal after a while. I don't see it that way if they have to go in and out of the bladder a number of times. I don't want to be using a catherer (spelling?). I don't want to have my bladder removed and a new one created if need be. I don't want to piece meal this whole process only to find out a few years down the road the cancer spread somewhere else.

I told my Dr my hips were hurting. He wanted to know if it was one hip or both. I told him both. He said no problem - if it were only one hip he'd be concerned. I failed to mention that it the pain was on one side of my hip for a while before the other side started hurting. He chalked it up to arthritis. I know think I need a bone scan.

Now there's no drama involved here. And maybe my bladder cancer really is in it's early stage and very treatable with this BCG. That's all a maybe. Maybe the BCG does not work.

Anyway here is my thought. I've been advised that instead of this BCG treatment tell my DR. I want to hit this cancer hard with systemic chemo. That way I know all the cancer cells in my body are destroyed. I don't have to wait for years not knowing if something is going to pop up. I won't have to have my bladder removed if the current treatment does not work. My piece of mind my actually give me a better sense of security knowing that no cancer cell for anywhere went anywhere else. The charge nurse of a cancer floor at a major hospital told me this is the route she would take after seeing what people go through trying to suppress potential cells that ultimately turn into cancer and the treatment is long, drawn out and really effects your quality of like. Her position was hit the cancer hard from the get go. I need to know what anyone else may think about this. I meet with my Dr. tomorrow to discuss all this. I'm sure he'll want me to continue the BCG treatment and take a "wait and see" attitude. What do you think? Thanks wjjjcm