Hi, I'm feeing a little overwhelmed at the moment. I was diagnosed with lung nets in 2011 and had a successful op, monitored until 2015, and given all clear. In 2019, by a fluke, it was discovered i again had lung nets, but now 2 or possibly 3, difficult to tell. I started on Everolimus. There has been continued, if minimal growth between scans. I also started on Lanreotide injections. ((Within 9 months of that diagnosis I found i had breast cancer (not related to the nets) and i again have had surgery.)) At my last appointment i was told that there had been substantial growth between scans and the Everolimus was no longer working as it should. I was told my only course was Targeted Radionuclide Therapy, which is unavailable on the NHS for my condition, and would cost in the region of £90k. Unfortunately I was on my own at the appointment so my head wasn't in the right place. (i did ask about chemo, but was told that it wasn't very effective and side effects weren't worth it. Surgery has always been ruled out because of the location in the lung) My husband has emailed the consultant with questions I wasn't able to ask, but we've yet to have a response. At the moment all I can think about is when am i going to die. I accept it is going to happen, but at the moment i feel lost, not knowing what i need to know. My husband isn't sleeping and we're both trying our best to be positive. I don't know where to go or what to do next.
