Lung Carcinoid

FormerMember
FormerMember
  • 2 replies
  • 12 subscribers
  • 1375 views

Brand new to this site.

Short history:- Ovarian Cancer in 2009 treated with surgery only; Colorectal Cancer treated with Surgery only in January 2020 and now Neuroendocrine Cancer in Right Lung and Bronchus treated with Surgery in April 2020.  Margins apparently were too small and I am having PET scan tomorrow to find out where the remaining cancer may be hiding.  I haven't been told stage or anything yet.

My questions (well the first few of many):-

Is there anyone else here who has been treated for NET in Lungs and it was successful?  

Should I ask to be referred to a NET specialist?

I am really scared by all of this but I am trying to stay positive but it is so tiring.  I am currently awaiting for consultation with Macmillan Psychology Dept. 

TIA for any responses.

  • Hi Scottish Misty and a very warm welcome to the online community

    I'm sorry to read how much you've been through over the last 10 years or so and that now you have a NET in your lungs.

    As I'm not a member of this group I can't help with your question but I noticed that you hadn't had any replies yet. While you're waiting, if you type 'NET in lungs' into the search bar in this group you'll find quite a few previous posts which mention this. You could have a read through those and respond to any of the posters who you think might be able to help further.

    I hope your PET scan went well and you'll have your results and treatment plan soon.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember

    Hi Scottish Misty, I haven’t logged in for a while but just saw your message.  I have atypical lung carcinoid/neuroendocrine cancer.  I found it really helpful to be referred to a NET specialist centre, and if you haven’t yet already been referred, you might want to follow that up.  They have a good focus upon the best treatment options and most have a nurse specialist too.  I have also found Neuroendocrine Cancer UK particularly helpful https://www.neuroendocrinecancer.org.uk. They have lots of information and they also pointed me in the direction of a clinical trial that was suitable for me.  I think we “lung primaries” are not so common, but I do hope that things have moved forward in a positive way for you.

    best wishes, Deb