One Year Later

Karen, Dan, Don, Zachary, and Joe
I have expressed my opinion to my husband which is DO IT NOW! I hear you all loud and clear and I LOVE your opinions. That's why I am here!

We have done the 2nd and 3rd opinion at Brigham and Women's and a well known doctor friend who has an Oncology practice. My husband doesn't understand the medical stats and jargon as well as I do. As some of you may remember I work in the ER at a large hospital in Massachusetts. I have so much information and resources at my finger tips, I feel fortunate. But then again I don't want my knowledge to be in vain if he doesn't listen to me.
I have put it as simply as Karen stated it....I want you alive without a bladder not dead with it still inside of you!
Is he in denial? Is he being stubborn? Is he scared? He is all of the above....

I scheduled an appointment with his primary care physician and asked him to talk bluntly to him about the choices and the risks of delaying the inevitable.

Thank you all for your replies. They really mean alot to me.

I know this is just my opinion, and please don't take offense, but

"GET THE DISEASED BLADDER OUT OF HIM"!!!!!

Your husband doesn't need it to live. There is life after Bladder removal. I wish my husband and I had that option. Please don't wait. It can spread.....We are perfect examples of that. Then there are no other options or choices, they get taken away in the blink of an eye. Bladder removal is so much better than what we are looking at which is maybe 6 months to a year, and that is with the chemo!!!!!My husband is going to die from this! This cancer can take over and kill your husband too! Don't be naive. It is just a bladder. He will still be alive, and you will be together. Just my opinion.......But opinions are like A-Holes, everyone has one. Don't be afraid just get it done. The alternative sucks! Take it from me, my husband, and our 8 kids!!!!!!!

Good Luck to you,
Karen

Well bubbles it seems to me now is the time to make the decision and take the bladder out. Trying to save it at this point and I am no Dr is just going to end up doing more harm then good and there is no going back. If it were me and it things got to this point as much as I would not like it I opt to take my bladder out. Just my opinion, Joe

Dan has certainly done his homework on this matter, as you can see by reading his story:
blcwebcafe.org/stories/dan.asp

His thorough research made me feel much better about my own surgery with Dr. John Stein at USC/Norris.

Thanks, Dan.

Hi,

Please understand that my comments are not intended to be critical.

If the decision to try BCG + Interferon is your doctor's recommendation, then has your husband had a 2nd opinion done at a comprehensive cancer center after his most recent cystoscopy? I'd place a pretty big bet that if your husband's T1G3 + CIS recurrences happened shortly after mitomycin, then again after BCG (or vice versa), that the experts would recommend bladder removal, now.

If the decision to try BCG + Interferon is your husband's preference, I just want to be sure that he understands the following:

1) several large studies have shown that understaging of high-grade cancer occurs 34% to 62% of the time - the odds are not insignificant that his staging is incorrect and might be too low
2) long-term survival (after bladder removal) for cancer contained in the bladder is about 85%, when done by excellent surgeons.
3) it's about 60% if the tumor is invasive but not in the lymph nodes
4) it's about 35% if cancer is in the lymph nodes

There is no right or wrong decision here, we all have the right to choose our destiny, to the extend we can.

One surgeon told me that with high-grade cancer, you don't get a second chance.

After being on this site for awhile, I've come to the conclusion that many of us who have high-grade cancer fall into two groups:
1) those who want to try bladder-sparing therapies in an attempt to save their bladder
2) those who want the most aggressive treatment possible that will give them the best chances of long-term survival

Again, these are just my thoughts, they don't mean I'm right.
Good luck!

Dan

Thanks for the replies Wendy and Don
I never thought at the 3 month follow up that cancer would have already returned.  I knew "in the future" it might come back.  It was really disappointing. 
The doc explained to us on Friday that even though hubby is considered a "BCG" failure it is worth it try BCG w/ interferon.
I love your story Don, it at least gives me a little hope.
Nine months with freedon from the monster must feel awesome.  We felt the same way for 3 months between the end of BCG treatment and the first Cysto.