The Roy Castle Lung Cancer Foundation
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Waiting

So, my husband has been offered no treatment due to his co-morbidities of poor kidney treatment and CLL( in complete remission) ....He has no symptoms, has not lost weight , despite the fact that he was told 17 weeks ago that he has adenocarcinoma that has metastasised to his liver and spleen. We have an appointment for a second opinion next week but it's an NHS referral and the Consultant has already informed our Gp that she is unlikely to disagree with the original oncologist. ( not sure how this equates to a 2nd opinion) My husband tested negative for mutations/PD-L1 so can't have immunotherapy. I would like to co-pay for drugs as doing nothing at all and waiting for him to become ill and die is just unbearable, has anyone done this ? . Would we be better to have a private 2nd opinion? ...I have lost trust in the NHS because we have had such an awful experience ...feel like they are all in cahoots , determined not to spend anything on my husband x .. so much for the NHS mantra " no decision about me, without me "

Thank you x

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Dear alice111

Sorry to hear of your ongoing situation, the current two options you perhaps have is to still keep the second opinion next week to see what may be offered, and have a private consultation also. This would enable you to perhaps have some peace of mind that you have tried all avenues available. Sometimes it is speaking to a professional who is right for you and your husband who will instill confidence and trust.

Keep us posted how it all goes for you, and as always if you wish to discuss anything in confidence you can call us on our free nurse led helpline number on 0800 358 7200.

All the best

The Roy Castle Support Team

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I think that is such a frustrating place to be ,but await the second opinion you never know it might not be as negative as it sounds ,there might be something out there for him .I think soon I will also be told similar news at the moment I am constantly suggesting that there must more we can do to treatment my own symptoms as I have an undiagnosed cardiac tumour which I am trying to get diagnosed at least we would know what it was then .It is giving me problems but like yourselves I am unwilling to give up on .Cancer is rubbish and I know difficult to treat but like yourselves I just want to keep going for as long as I am able and have mental capacity .Good luck with the second opinion fingers crossed something will come out of it .Even if it means splashing the cash if that's the only way ,why wouldn't we if there is a chance it may work .Diane

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