Hobson's Choice

FormerMember over 5 years ago

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"I don't know what to suggest" - not the words you want to hear from your oncologist but I'll put it into context.

Had my 28 day appointment for bloods and pick up of tablets (Tagrisso). Had discussion with my oncologist regarding what the next steps will be after March as my company health insurance plan will only cover 12 months of medication. I have been stable using this drug for over a year now, with very little side effects, and with the first month showed a marked shrinkage in the primary tumour (6.2cm - 3.9cm). As NICE has, yet again, rejected the use of Tagrisso as a Stage 1 treatment I have two choices (hence the title of this post):

1, Revert to the NHS for treatment with another TKI (Afatanib) that is less effective and has more side effects

2. Self fund - I have been told this would be £8,500 every 28 days.

I am currently still working but, if reverting to NHS, will probably retire so it is likely that my NHC treatment, side effects, and no longer paying 40% tax will result in no saving for the government. I am still considering what to do.

Incidentally, to rub salt in the wound, they did an ECG on me as my pulse was high and have said that I am probably back in AF (was "cured" of this some 7 years ago. I've still got a lucky white heather for sale - only one previous owner and not used

FormerMember over 5 years ago

Hi John Boy

I know this is a decision you have been mulling over for sometime now.

We are all different and sadly no one but you can make that choice for you. I know that is not helpful, I have been there a few times myself with making decisions. Luckily in hindsight, so far I have not regretted any that I have made thus far..... but who knows if they were the best ones for me?.... I guess no one will... I guess like you are doing, is thinking it carefully, logically through, the pros and cons of each and the more you talk it through, you will find your mind is made up one way or the other.

Have you tried the helpline or local cancer centre or family/friend you can talk to about it to help you?

I was using a help to quit service whilst deciding if I wanted surgery or not, the more I spoke to her, some of the things I said, showed I had already made the decision but hadn't quite realised it.. for example; "I better order a suitcase"... little things like that.

Side effects, who knows, some may be different, but we don't know till we have any if we can manage them.

Can you switch to NHS, work for a scan after the switch, see the results, then go back on the original treatment if not good or too many effects?

Sorry to hear of your other medical issues too. I hope they pipe back down again for you.

You have time to make a decision still, keep talking it through, you will make it I am sure.

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Hobson's Choice