I was diagnosed with EGFR stage 4 cancer 4 1/2 years ago as a 42 year old nonsmoker. I have been on Tagrisso for almost 3 years with great success, however have had to have various spots in my lung, back and ribs radiated. I am currently getting radiation for 2 small lung nodules and we are watching one hot spot that may be a lymph node. Because of the length of time on Tagrisso and the size of the largest nodule/tumor, my doctor ordered a tissue biopsy. We will continue to discuss the implications of the findings, but it seems there is not indication in the sample of EGFR or T790m, but rather large cell endocrine caricinoma. The initial plan suggested has been to discontinue Tagrisso and have a wait and see approach in hopes that the lung nodels are wiped out by the radiation. I will be asking him about if it is premature to discontinue the Tagrisso--what if it is preventing metastic spread elsewhere in my body? It sounds like we would reassess things after my PET scan in September. If there is growth, it sounds like traditional chemotherapy would be the route to go. I've been able to avoid it thus far but I knew I'd need it eventually. The other question, which I know is always a difficult one with no clear answers, would be how this affects my likely prognosis. I've been stable/managing progression so well for a while that I have taken on more work responsibilties, etc. However, it seems perhaps I need to prepare for the difficulties of chemotherapy in the months to come and potentially even a shorter life expectancy due to the addition of the large cell neuorendocrine carcinoma.
Any information you could provide about the nature of this change in my cancer type, including treatment options, etc would be greatly appreciated. I am trying to develop a list of questions to ask the doctor when we connect again in a few days.
Thanks so much.