Rare genetic mutations

Hello you lovely people. I saw my oncologist on Tuesday who confirmed that I am now classed as incurable. I have now received a letter, in my online records, stating that I have a rare genetic mutation, EGFR. My lovely oncologist has said that she will apply to the board for hi cost cancer treatment, if I get offered surgery at the liver specialist hospital next Tuesday! Do any of you have any experience of dealing with this board? Many thanks in advance.

  • Hiya Wave  I think the process you are referring to is the standard process for getting approval for any cancer treatment.  And not just cancer, I believe it's for  high cost drugs too for other conditions.  It's segregated by NHS region, so there's one in Scotland, one in Eng & Wal, and another in NI.  Each approve applications from hospitals according to where people are located.  The board then looks at their approved treatments and signs it off, and tracks the future expenditure against budget I assume.  It's the "Scottish Medicines Consortium" in Scotland, where I am.  You can go on to the websites and see what is approved for use and they regularly add to it, or amend what existing drugs can be used for.  

    This happens in the background as standard.  My consultants didn't mention it to me.  It's just admin.  But this sounds like what you are referring to.  

  • Thanks Mmum. I’ll have a hunt and see what I can find.

  • EGFR is not very rare...so there will be a few treatment options. 

  • Hi Pet are you still on nivolumab and how long have you been on it, if you don't mind me asking, I've been on it for 4 years now with. regular breaks. I start again next week. Besides making me diabetic, I'm quit happy with it. Take care . I also have a mutation. Xx


  • Sorry Joel's for jumping in to ask Pet a question. There are a lot of mutations I have 1. Some treatments work better when you have a mutation, aparently my immunotherapy does. Good luck with any treatment you receive,  we're all here for you xx


  • Thanks Moi. Never apologise for jumping in. It’s nice that we can do that.

  • Thanks Pet. I was a bit surprised! My oncologist has told me surgery is my next option. If that’s not successful, then just cetuximab? 

  • Jools...you're lucky that you can have surgery. That's good. Fingers crossed for you.

  • I’m not guaranteed to be offered surgery, but hopefully will find out today. I know I will be lucky if that is the case. I hope I haven’t upset you Pet.