Lung carcinoid at 26, only being monitored for 10 years

I was diagnosed with a carcinoid lung tumor earlier this year and subsequently went on to have a bilobectomy of my right middle and lower lobes. I am now going to be monitored for the next 10 years, a lung CT scan every six months for the first two years and then one every year for the following eight years. I will only be 36 when monitoring stops. I understand that the recurrence of this type of tumor is incredibly low but so were the chances of getting it at this age in the first place. Additionally, a lot of what I have found online indicates that recurrence tends to happen elsewhere in the body. My tumor was previously missed on two scans and I am feeling incredibly anxious about the possibility of recurrence elsewhere in the body and not knowing because the CT isn’t covering that part of my body. Has anyone here ever experienced recurrence of a carcinoid tumor? Or does anyone have any advice in how to deal with this feeling? Thank you x

  • Hello, i too was diagnosed with a lung carcinoid tumour and had a right upper lobectomy and some cryotherapy on a small spot in my bronchus. This was back in July 2021. Since then I have had gallium pet scans/ CT with contrast or MRIs (rotates every 6 months) and a yearly rigid bronchoscopy to check the area where the cryotherapy was used. I also get my bloods taken every 6 months. My pet scans are from head to knee and other organs are checked for any recurrence. From what I have read, it is important to be monitored by a centre of excellence in neuroendocrine cancer as it is a rare disease with few specialists. Hospitals in London have examples of somewhere with a specialist neuroendocrine cancer department, but there are others in the country. I have been told that I will need lifelong monitoring. Websites such as neuroendocrine cancer Uk and the Facebook group Loveable Lungoids are very informative and can help guide on the correct follow-up routines to pursue. Obviously everyone is unique in their path and care they require, but I have definitely felt reassured knowing I am under experts.  I think the further out from the operation you come, the easier it becomes to deal with any anxiety about reccurence. I don’t have any tricks with dealing with scanxiety, but there’s some comfort in being checked regularly as they will hopefully catch anything early. Wish you lots of luck and good health going forward.