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I have a neuroendocrine tumour in the small bowel and liver lesions
Neuroendocrine Tumors (NETs) | Last Active: 1 hour ago | Replies (31)Comment receiving replies
Hello @mhcohan and welcome to the NETs support group on Mayo Clinic Connect. Yes, there are discussion groups for lung NETs. Here are links to discussions about lung NETs:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=lung&index=discussions
In these discussions, you will meet @californiazebra, @ce1b, @pattirushing, and others. I trust that they will share their treatment experiences with you.
As this is your first post, please share as much as you are able about your NETs journey. Is this a new diagnosis for you? Were you having symptoms that led to the discovery of lung NETs? I look forward to hearing from you again.
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@hopeful33250 Thank you so much for your prompt response. Yes, It is my first post. Small Lung nodules noted on CT scan in 2018, one in particular that was 8 mm has been growing slowly. Had biopsy in September and is was + for NET neoplasm. Just diagnosed. Have completed PFT's which were great and now waiting for PET Dotatate. Then I will meet with Thoracic surgeon. Do not have an oncologist. I do see a pulmonologist who has been following nodules since 2018; she ordered biopsy and gave me referral to surgeon.