Endocrine Tumour

Hi,  was diagnosed with an endocrine tumour in my left lung on November 19th which is too close to major blood vessels to operate but thankfully it is slow growing. I saw the oncologist two weeks ago who said I now need an Octreotide scan before treatment can start. Treatment is going to be monthly injections so not going to be treated with chemotherapy or radiotherapy. 

My question is, does anyone have any experience with this type of lung cancer or the scan I am going to have? This is something I have never heard of before and do not know anyone to talk to about it.

  • Hi  and a very warm welcome to the Online Community although I am so sorry to hear about your diagnosis. This is such a challenging and stressful time for you but I do hope you find the community a safe place to get support and ask your questions.

    The New to Community is like our reception desk where we can signpost you to our various cancer specific support groups and other services so can I recommend that in the first instant you consider joining our supportive Lung Cancer group. This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.

    If you'd like to connect in with a group, you do need to join the group. Click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Joinbutton under "Group tools."

    You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so hit ‘Chat or Start a Discussion in New here, say helloand you are ready to go.

    You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

    To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section

    Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centrein your area as these folks are amazing.

    Always around if you need further help in navigating the community.

    All the very best ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Hi  and a very warm welcome to the Online Community although I am so sorry to hear about your diagnosis. This is such a challenging and stressful time for you but I do hope you find the community a safe place to get support and ask your questions.

    The New to Community is like our reception desk where we can signpost you to our various cancer specific support groups and other services so can I recommend that in the first instant you consider joining our supportive Lung Cancer group. This will be a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support.

    If you'd like to connect in with a group, you do need to join the group. Click on the Green link I have created above. Then once the page opens click on the black banner that says [click to join] at the bottom, or the [Joinbutton under "Group tools."

    You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New (Computers) or + (Mobile Devices). You will then see a dropdown menu so hit ‘Chat or Start a Discussion in New here, say helloand you are ready to go.

    You could copy and paste the text from this your first post. You can also search through existing ‘Discussions’ and click [reply] if you want to put up a comment.

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

    To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section

    Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centrein your area as these folks are amazing.

    Always around if you need further help in navigating the community.

    All the very best ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Hi again - I just put endocrine tumour into the search tool Mag near the top then selected ‘everywhere’ and come up with a number of posts. Have a look through and as always you can hit reply to any post and see if the folks are still using the site ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Oh thank you so much, I will have a look. It is such a rare cancer that information seems quite sketchy. It would be good to speak to someone with a similar type of cancer, 
    Thank you once again, Suzanne