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12 years 7 months ago #469 by caz
thanks Cynthia......sorry to have not replied sooner but as you can imagine things are very hectic here at present.

I just wish he would have had the operation... :(

I'll take a look at the links you gave me.......

and thanks for listening :)

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12 years 8 months ago #409 by Cynthia
Hearing the C word is one of the most freighting things anyone can hear. Your husband can really use your help right now finding information for him to make an informed decision. Many times as the shock wears off we are better able to take it all in.
Do not worry about using the right terms that will come with time and this is all so new to you.
The following is a link to join the Bladder Cancer Web Café list server it is a group over 500 bladder cancer survivors that share information and support. You will find many men that have full normal lives there that have had thier bladder removed.  I think you will find this resourse as invaluable as I have. If I where you I would sign up for the list and post the question you have asked here and see what you hear back.

http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=bladder-cancer-cafe&A=1

This is a link to the Bladder Cancer Advocacy Network it will offer some good links, information and also has a link to a site that offers a twice weekly on line support chat for bladder cancer survivors.

www.bcan.org

These are two links to information on invasive bladder cancer on the Web Café

http://blcwebcafe.org/invasiveblca.asp


http://blcwebcafe.org/radiation.asp


I hope this helps in some small way.


Cynthia




Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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12 years 8 months ago #402 by caz
Hi from the UK.

A few weeks ago we found out that my hubby has bladder cancer.

Oh what a few weeks this has been............seems like a lifetime. :(

He has a very aggresive high stage cancer and we went yesterday to see the consultant who's been treating him so far.

He's had an initial operation to remove as much of the tumor as possible but it seems it was well embedded in the wall of the bladder. Sorry, I don't know all the 'technical terms' yet. I'm sure I'll soon learn!

His choices were a radical operation to remove the bladder etc. or radiotherapy. The consultant recommended the former but my hubby won't have that and has gone for radiotherapy.

At this moment in time i'm frantic and can only see worry ahead of me for the rest of my life........or my husbands.

I've been browsing the web and saw this site. I've read quite a bit of it and I think this forum is brilliant. At least writing this all down is making me feel a little better.......getting it out of my system sort of thing. :(

It's scarey...........so scarey :-[

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