Stage 4 lung cancer BRAF v600e mutation

I was given this diagnosis 16 months ago and consider myself young at 59. I went to the doctor with a croaky voice, being a non smoker I was shocked to go from being a healthy, fit, fulltime teacher, fulltime wife, mother and grandmother to a person with stage 4 lung cancer that was terminal all within 2 months. Making the ordeal worse was discovering it’s a rare forum with only 2-5% world population which meant even my oncologist who was amazing and continues to be amazing, with an equally amazing team around her, can’t always answer all the questions. Medically they can without question but with so little statistically available, finding information can be hard. I aim to write a blog to help others in the future with my story, but does anybody out there have my form of lung cancer and would you like to chat? I have been taking targeted therapy pills since diagnosis which has up until recently kept everything stable. We have a meeting next week to discuss the next steps due to tumour growth. We are not UK based we are overseas UK territory and my team work along side a UK hospital so our care may differ but it would be nice to talk with anybody out there with this same gene mutation. Staying positive mentally and physically but would be great to hear from someone in my position. 

  • Hello Gib67

    I'm sorry to hear that you were given a stage 4 lung cancer diagnosis last year and that you then went to find out you had a rare mutation. It sounds like those few months were a real rollercoaster and I can understand that it might have all felt overwhelming at times. 

    I can't see that we have any other members who have this particular BRAF mutation alongside a lung cancer diagnosis but there are 2 other members who have recently posted about living with incurable lung cancer. 

      briefly shared her news in this post and  posted to say that they were diagnosed earlier this year with SCLC. Hopefully you might be able to connect with one of these members soon. It's also worth having a look at the Roy Castle Lung Cancer Foundation website as well if you've not already done so. 

    If you decide to write a blog about your journey, Gib67 do let us know. We do have members occasionally share these kind of things and I know other forum members often benefit from reading them. 

    Keep in touch and let us know how you get on at your meeting next week. We're here for you. 

    Best wishes, 
    Jenn
    Cancer Chat moderator