Hi Only-Me,

I’m sorry to read your post about your recent diagnosis, my dad was diagnosed last May ( stage 3c) and told only palliative care with a prognosis of months. I felt that at age 89, my dad was being ‘written off’ and did my own research; finding out that if dad had a less invasive liquid biopsy ( a blood test) it could potentially find a mutation that could be treated with targeted therapy. Although my dad didn’t qualify for a clinical trial, the Oncologist agreed a liquid biopsy on the NHS. The test did find the EGFR exon 19 del mutation and dad started taking Erlotinib, a subsequent scan revealed a partial response / tumour reduction. Fast forward to now and it appears that dad has built up a resistance and the tumour has grown again with some spread to lymph nodes. Now having a EBUS to take tissue and we are also paying privately for a liquid biopsy, again to find if the mutation has changed to ( not uncommon) T790M, if yes, then could have different targeted drug therapy-Osimertinib. We know dad’s Oncologist is doing his best but he is sadly constrained by NHS workloads and appointments are always rushed. Ultimately for my dad, we just want more time, not the original prognosis, we know the time is limited but dads a fighter and not ready to give in, he wants to live.We understand that cancer is unique to each person and reactions could be different taking the same drugs; the best advice I could give for anyone on this hard journey is to be your own advocate and question what you are told, a good Oncologist should explain things so you understand all the options available. Also there are different forums online, specifically for Lung Cancer that I would definitely recommend seeking out…..not sure if the forum rules allow me to give the names here,.one is named after an entertainer who died from lung cancer on 2 September 1994.

Sending you all best wishes on your journey.

Hi Only-Me,

I’m sorry to read your post about your recent diagnosis, my dad was diagnosed last May ( stage 3c) and told only palliative care with a prognosis of months. I felt that at age 89, my dad was being ‘written off’ and did my own research; finding out that if dad had a less invasive liquid biopsy ( a blood test) it could potentially find a mutation that could be treated with targeted therapy. Although my dad didn’t qualify for a clinical trial, the Oncologist agreed a liquid biopsy on the NHS. The test did find the EGFR exon 19 del mutation and dad started taking Erlotinib, a subsequent scan revealed a partial response / tumour reduction. Fast forward to now and it appears that dad has built up a resistance and the tumour has grown again with some spread to lymph nodes. Now having a EBUS to take tissue and we are also paying privately for a liquid biopsy, again to find if the mutation has changed to ( not uncommon) T790M, if yes, then could have different targeted drug therapy-Osimertinib. We know dad’s Oncologist is doing his best but he is sadly constrained by NHS workloads and appointments are always rushed. Ultimately for my dad, we just want more time, not the original prognosis, we know the time is limited but dads a fighter and not ready to give in, he wants to live.We understand that cancer is unique to each person and reactions could be different taking the same drugs; the best advice I could give for anyone on this hard journey is to be your own advocate and question what you are told, a good Oncologist should explain things so you understand all the options available. Also there are different forums online, specifically for Lung Cancer that I would definitely recommend seeking out…..not sure if the forum rules allow me to give the names here,.one is named after an entertainer who died from lung cancer on 2 September 1994.

Sending you all best wishes on your journey.