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Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Posted by dak10 @dak10, Mar 14, 2023

I am newly diagnosed with Neuroendocrine tumor of lung. I have been monitoring a lung node in the lung since 2017 with no change, until last CT scan the node grew, to tumor/mass, biopsy found Neuroendocrine tumor. Oncology wants to begin Lanreotide injections to slow/ stop growth. I am very scared and am unsure about Lanreotide. I welcome your comments.
Thank you!

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 27, 2023
In reply to @dak10 "Thank you so much for sharing your experience. My PET scan showed numerous spots in the..." + (show)
@dak10

Thank you so much for sharing your experience. My PET scan showed numerous spots in the right lobes of the lung and in the lung lining, also the tail of the pancreas and spleen. I am scheduled for a CT scan of the abdomen which will be specific to review pancreas/ spleen on 4/25, and will meet with the Dr. on 4/26. My first injection will be on 4/20.
Thank you,
Dak10

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Hello @dak10,

I see that you were having an abdominal scan in April. Did you learn anything new from that scan.

I hope you are doing well. I would like to hear from you again. Will you post an update?

REPLY
ce1b | @ce1b | Oct 28, 2023

Hello
I too have a NET tumor on my left lung that has metastasized to my lymph nodes.

I did both radiation and chemotherapy prior to starting my monthly Lanreotide injections. This next week will be my 8th treatment.

If I had any advice it would be keep up your physical activity. Walk, do yoga, practice meditation to keep body and mind in good health.

As for the NETs, eat healthy and eat small portions. I have found that some foods increase the likelihood of negative reactions either from the cancer or the meds.

When supplementing your diet with fruits be aware of the added sugars.

Know that my radiologist call the NET carcinoid tumors “the lazy cancer”. No less deadly, it just takes a little longer to kill you.

I wish you good health and fortune in your NETs journey.

My book read for this month is “A Beginners Guide To The End”, by BJ Miller.

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