1. < Neuroendocrine Tumors (NETs)

Any advice for someone recently diagnosed with NETs?

Posted by Pamela Shirley @pammy229, Dec 27, 2024

I was diagnosed with an embedded NET in my bronchial tube on December 17th. Any general advice while I’m waiting for my PET scan on January 2nd? Recently a doctor noticed I had the tumor in 2015 by looking at an old CT scan.

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ladonnagissel | @ladonnagissel | 2 days ago
In reply to @annamill "My father is diagnosed with NET in pancreas. He is 79 years old and he is..." + (show)
@annamill

My father is diagnosed with NET in pancreas. He is 79 years old and he is proposed the surgery, distal pancreatectomy with removal of the spleen. I would to ask if someone had the same surgery, what is the post operative treatment and life after the surgery. The tumor is well differentiated and is not spread.
Did someone started with somatostatin treatment instead of surgery?
Thank you for your answer,

Best regards,
Ana Milojković

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Hi I had my surgery in Aug 2024 about the same I am 73 I had a robot assisted in Phoenix with Dr Brinks .In hospital two and half days /five small openings one medium one to remove spleen. Recover Gi upset was worse eat light food and My pain was not bad go slow walking .
I drove my self to follow to see Doctor over100 miles in 6 days .Try to find this kind of surgery small the much faster recover Best wishes

REPLY
annamill | @annamill | 1 day ago

Thank you very much for your reply. I am happy to hear that everything was well in your case.
My father live in Serbia and I think that the surgery will be the classical one. The postoperative course is the thing that concerns me. How long does it take for you to start eating and to have normal Gi function? Do you have to take pancreatic enzymes? Do you have any restrictions in diet now?
Best regards and all well,

Ana

REPLY
matt2024 | @matt2024 | 1 day ago
In reply to @annamill "My father is diagnosed with NET in pancreas. He is 79 years old and he is..." + (show)
@annamill

My father is diagnosed with NET in pancreas. He is 79 years old and he is proposed the surgery, distal pancreatectomy with removal of the spleen. I would to ask if someone had the same surgery, what is the post operative treatment and life after the surgery. The tumor is well differentiated and is not spread.
Did someone started with somatostatin treatment instead of surgery?
Thank you for your answer,

Best regards,
Ana Milojković

Jump to this post

Hi @annamill
Sorry to hear about your father's illness. If it helps, I was diagnosed with multiple pancreatic NETs as a result of MEN1 about 6 years ago and ended up having a total pancreatectomy in 2019. Since then, I am on an insulin pump and pancreatic enzymes and have managed fairly well with A1C's in the low 6's. I do have to be mindful of the fat content of food with the enzymes (Creon) but all in all it has been manageable. My endocrinologist has been very helpful in working with me to tweak my pump settings over the years to avoid highs and lows and I would recommend a pump/CGM combo if needed for your dad. Take care and God Bless.
- Matt

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