Two years ago, lung nodules were incidentally discovered in a scan for something else. I was called into hospital for further scans and then had an urgent appointment with a consultant who told me that I was to have an urgent lung capacity test with a view to my being referred to surgeons to remove the lower lobe of my RH lung. Shocked, I queried this and was told that the probability was of cancer but they could not be certain until after surgery. When I asked why I could not have a biopsy, I was told 'because we do not have a needle long enough'.

Because of going to my employers and warning them that I might need a chunk of time off, I lost my job. I then had to live for 2 years, on my own, believing that I had lung cancer.

I was fortunate to then have a biopsy part of a trial of navigational bronchoscopy. The report said that I had cancer but 'the right sort' as mitoses of less than 2 meant it was currently indolent. This was then confirmed by a Dotatate PET scan. Since then I have had 6-month follow-up CAT scans which have identified further nodules of varying sizes.

I have now been moved to another team, the leader of which has written to me to say that he has looked at my scans and thinks my nodules are benign so I am being discharged with no further follow up. I appreciate that this is very good news but I do not understand it. I wrote back about 3 months ago to point out that I had a biopsy and a dotatate scan, and to ask questions, but have receeived no reply. Should I not have at least annual follow up? Do indolent nodules stay indolent or do they progress to something malign?

Has anybody else had similar experiences?