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Anyone have a neuroendocrine tumor (NET) in the spine?

Neuroendocrine Tumors (NETs) | Last Active: Oct 23, 2023 | Replies (56)
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@andy2020

I first started with a pain in my upper back at the centre, I had every scan you could think of, CT, MRI, PET, Calium scan, the list is endless.
But they still couldn't make their minds up what i was suffering from, so eventually I had a biopsy, By this time the pain was unbearable, I was begging them for help, so they gave me radio therapy and told me then that i had a secondary caner in my spine and all these scans were trying to locate the primary but without success.
Hope this helps?

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Replies to "I first started with a pain in my upper back at the centre, I had every..."
Teresa, Volunteer Mentor | @hopeful33250 | Feb 13, 2023

Hi @andy2020

You have really had a difficult time getting a diagnosis. I can understand how frustrated you must be with pain and no real answers. You do not mention if you are seeing a NET specialist. If you are seeing a general oncologist, I would recommend, at the very least, having a consultation with a NET specialist.
Here is a list of specialists in the U.S. If you cannot see one locally, you might consider a virtual appointment.
–Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Mayo Clinic has some excellent NET specialists that are on the list.

Not knowing where the primary NETs is located is really a difficult problem, as you well know. You mentioned that your doctors believe that there is lung NET. Has this been seen on a scan?

On Mayo Connect, we have another discussion group that might be of interest to you
--Determination of Primary Site of NET
https://connect.mayoclinic.org/discussion/determination-of-primary-site-of-net/?pg=1#comment-810108
Have you had an appendectomy anytime in your life? Have you experienced carcinoid syndrome (symptoms would be facial flushing and/or diarrhea)?

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irenag | @irenag | Jul 24, 2023

Hi Andy2020,
Do you remember if at the beginning your pain the the upper back was intermittent or constant? I have s pain at a spot in my upper back, on the right side of the spine, and it comes and goes but when it's here, it stays for a long time. I have a NET in my pancreas and the imaging hasn't indicated (nobody has told me) anything in the spine. I wonder ...
Thank you.

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