Seeking Support

Joe
I am indeed sorry that you have this diagnosis. The gut punches of bladder cancer keep on coming.
I am NOT a Dr. so , please take this as laymans advice.

GET THAT BLADDER "OUTTA THERE!"

If that sucker is bad..... The cause has to be removed.

My plan is tho use the aggressive attack that the University Dr has recommended but see if a Dr in your area can do the job in your insurance plan.

Remember.... You want an assembly line Dr that has done HUNDREDS!(Seen it... fixed it!)

Wishing you the best.

George

Sorry I didn't know.
Well I had my consul with the Urologist head at OHSU and he informed me that I have a very rare form of cancer called Plasmacytoid Varient Bladder Cancer. This isn't just any old bladder cancer. This is high-grade, very aggressive stuff with a 50% survival rate of 24mo if treated aggressively, so I'm assuming the other 50% fare a bit better. It starts with 3-4mo of chemo followed by RC.

If anyone needs some good reading, Google this rare bird.

Feeling a little disheartened today. He also mentioned my insurance isn't very cooperative when it comes to out of network services as we have a good cancer center there. Only problem is, the urologist at that institution said he could give me 80% cure rate with bladder preservation.What does one do?
Feeling a bit confused but no big deal as I've felt this way since my diagnosis.

Thanks for listening

joe

Hi Joe.

I live in Oslo, Norway and had my bladder removed some 10 years ago.

I was so depressed when first diagnozed. Actually I did not care about diversion or other things. So the UROs convinced me that having a bag was the best alternative.

At first it was uncomfortable to have it and it bowled out suddenly at an airport so I was taken aside for checkup. And at that time I felt that I had chosen the wrong diversion.

Over the years I have become used to live with my bag on my stommack and it does not prevent me from doing most things. I still work, travel etc. Only thing I don't do is jumping into the swimmingpool with it.

I wish you good luck with your surgery, and please let us know how things work out.

Sincerely,
Knut