Registered: Mar 2004
Location: North West
Posts: 32

Dear Forum Users,

I would like to reassure every body that KCUK is dealing with the NICE announcement as a matter of huge importance. It is not something that is being ignored and is our highest priority at the moment. KCUK will be following up on this matter through the formal channels available to us.

Pat Hanlon's time last weeks was fully taken up with press and media interviews and his time, dedication and passion is driven by the emotion that he feels for this cause, please remember that he has also been directly affected by kidney cancer so really understands how this affects people.

I understand the comments on here about the website needing updating especially about this high priority campaign issue and that is something that I am dealing with as a matter of priority. Pat has spoken to me today about the item he is writing to ensure the most recent information since last weeks announcement is prepared ready for updating the site. I have changed my regular work priorities tomorrow to be able to deal with getting the website updated.

I would also like to say that I have been encouraged by the voices of the forum members last week and the passion and energy that has been expressed. I agree you all need to do as much as you can to fight this cause, either individually or as a group, but please channel your energies to battle against NICE, please do not channel yor energies to fight against KCUK as this will only prevent us from getting on with what needs to be done. We are all on the same side here and all need to do whatever is possible to make the voice of those affected by kidney cancer heard loud and clear. Pat is continuing with the campaign issue and I will be getting the website updated. KCUK needs the support of everybody affected by kidney cancer to maintain and develop what we are all trying to acheive, please work with us not against us.

Thanks
Joan Thompson
Chairperson and Trustee

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Registered: Feb 2008
Location: Wigan
Posts: 46

Hello Joan T
I agree with you completely....we are fighting for the same cause what-ever kind of kidney cancer is involved.
I don't know if you have been on the Kidney-Onc Forum lately, but a lot of the people on there are actually e-mailing N.I.C.E. from all over the world - asking them what figures did they decide this from and had they included U.S.A and/or Europe ones as well.
Some of the Forum members have also asked their doctors, nurses etc. to send a message as well regarding how well the out-come has been from their patients.
We may have a fight on our hands, but we will fight them not each other !!!
Win

__________________
Diagnosed with renal cancer Nov 2006.....full right-side nephrectomy, adrenal gland and 5 lymph-nodes, thrombus from inferior vena-cava....misdiagnosed type of cancer...I`m a chromophobic kind now instead of clear-cell......
Returned on liver Nov 2007.......bummer !!!
Liver re-section May 2008, hopefully clear now.....
May have found mets on right lung...double bummer !!! had middle and lower lobes removed October...stuff found on my Diaphragm...geting a bit cheesed off now

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