Forum

× click new topic to begin your post

Seeking Support

5 years 5 days ago #47165 by sara.anne
Joe, did the original urologist give you the diagnosis of Plasmacytoid Varient Bladder Cancer? His "80%" rate might not apply if he had known that and thought he was treating a less virulent cancer.

With this more complete diagnosis, it is possible that your insurance might approve an out of group treatment. Also, isn't insurance sign-up about here?
Could you change plans?

I agree with George....

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

5 years 5 days ago #47163 by GKLINE
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

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

Please Log in or Create an account to join the conversation.

5 years 6 days ago #47161 by codocee
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

Please Log in or Create an account to join the conversation.

5 years 2 weeks ago #47133 by sara.anne
Joe, I am sorry but I had to delete your post. For security reasons for our members, we cannot allow posting of contact information. Sorry.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

5 years 2 weeks ago #47092 by Knut
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

Diagnozed first time April 1th 2004.
Muscle invasive, T3A.
Radical Cystectomy June 29th 2004.
Illeal conduit. Bag on my stommack.
The following user(s) said Thank You: DougG

Please Log in or Create an account to join the conversation.

5 years 2 weeks ago #47085 by sara.anne
When you have th results from the urologist at OHSU, tell him your insurance problem. Also, bring a list of doctors n your plan....he could even recommend one of them if necessary.

SA

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

Please Log in or Create an account to join the conversation.

  • Not Allowed: to create new topic.
  • Not Allowed: to reply.
  • Not Allowed: to add Files.
  • Not Allowed: to edit your message.
Moderators: Cynthiaeddieksara.anne

Users

Total Online: 0 Users and 1663 Guests 

Statistics

Today Total Opened: 0 Today Total Answered: 0 Latest User: frank41
Yesterday Total Opened: 0 Yesterday Total Answered: 0
Total Posts: 52785 Total Subjects: 6867 Total Users: 8440
Powered by Kunena Forum