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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
Is there a group for nets in the lung? Surgeon stated that treatment for a 23 mm neoplasm in the lung is surgery only, which in this case is would mean a lobectomy? has anybody been successful with other treatment options? Thank you so much for your help!
Replies to "Is there a group for nets in the lung? Surgeon stated that treatment for a 23..."
@mhcohan
Yes, I had a 26 mm lung NET destroyed with microwave ablation 4 years ago. However, in my case that was done because I have over 50 lung NETs/DIPNECH nodules scattered across both lungs/all lobes. That makes me ineligible for surgery as we need to preserve as much healthy lung tissue as possible. We’ll just ablate the most problematic nodules. I was told that surgical removal of the tumor/lobe is the standard of care had I just had that one tumor.
Having said that, the field of medicine is ever-evolving. Have you sought out a second opinion? Is the surgeon part of a NETs team? Consulting with a NETs team is a must. Best of luck with your treatment.
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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.