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@dak10

Hi, my lung nodule was found incidentally. I had a benign lipoma removed from my abdomen, and prior to that surgery a PET scan was ordered and the nodule lit up, they sent me to a thoracic surgeon, he wanted to remove it, stating that sometimes these modules turn to cancer. I declined the surgery and opted for monitoring it by CT scans. The scans were all normal with no growth, one year it was smaller. Scan in 2021 all good, 2022 showed growth, enough for a biopsy. Biopsy came back as Neuroendocrine tumor, was sent to oncology, they said we will do a PET scan and do more blood work in 3 months. The oncologist said as long as I was not experiencing any symptoms, no hurry to do anything. I felt great about that, my family pushed for a second opinion, and the new oncologist specialized in all NETS, she said why wait. Within a week I had a PET scan, MRI of my brain, and more bloodwork. My right lung and right pluera lit up and a small part of my pancreas and spleen. She said my tumor is grade 2, stage IV, ki67 4%, she recommends I start the Lanreotide next week, surgery is no longer an option, I still do not have any symptoms. The past two weeks have been a whirlwind, and tomorrow morning she wants anothe CT scan of the abdomen to review the pancreas and spleen. Currently I am very emotional and can’t believe this is happening, I wish I would of had the surgery in 2017 . Thank you for your comments and you give me hope!
Regards,
Dak10

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Replies to "Hi, my lung nodule was found incidentally. I had a benign lipoma removed from my abdomen,..."

Hello @dak10,

I so appreciate hearing from you again with some more information on your journey with NETs. Your post certainly shows the importance of seeing a NETs specialist. I'm sure that you are glad that you did.

I can understand your comment, "...I am very emotional and can’t believe this is happening." This is a common reaction to a diagnosis of NETs as there often aren't any symptoms when it is discovered.

As it sounds as if you have a good medical team on your side, I hope that you are able, to some degree, to accept your current emotions as normal and do your best not to worry excessively. I know that this is easier said than done, but nonetheless it is a worthwhile goal. Please use this forum and get to know the members of this community and use it as a sounding board for your fears and concerns.

You may also be interested in these related discussions:
– Typical Carcinoid Tumor in Lungs https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
– Not sure I'm in the right place: Stage 4 Neuroendocrine carcinoma https://connect.mayoclinic.org/discussion/not-sure-if-i-am-in-the-right-place/
– NETs: Anyone has Liver debulking for liver metastasis? https://connect.mayoclinic.org/discussion/net-liver-debulking/

As you read the posts in these discussions, feel free to ask questions of the members who have posted (just click on "Reply" under the post). As you meet others and learn from their experiences, you will gain important information about how they have adjusted to their treatment of this rare disorder.

Will you keep posting as you have concerns and questions?