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Anyone have a neuroendocrine tumor (NET) in the spine?
Neuroendocrine Tumors (NETs) | Last Active: 6 days ago | Replies (69)Comment receiving replies
My fiance was diagnosed with NETs in Sept of this year after 3 ED visits with extreme lower back pain, around the iliac crest and SI joint. Primary is unknown but scans have shown tumors all along the spine and in the bone with a small grouping behind the lungs (possible primary site). Current plan is a consecutive week of radiation but main NET specialist doesn’t want to start any medications (immunotherapy, chemo, etc) since he is otherwise healthy and they don’t want to “introduce side effects” or “speed up the tolerance to medications before they’re needed”. He has had CTs, MRI and PET scans. It seems the back pain, as mentioned here, is unique to most as well as the tumors being all along the spine and in the bone of the spine. We look forward to hearing others stories, successes and recommendations.
Replies to "My fiance was diagnosed with NETs in Sept of this year after 3 ED visits with..."
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Hello, @tatnick02, and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. I joined Connect when I was facing my third surgery for NETs and it was encouraging for me to learn from others about their NETs experiences.
My first thought would be to encourage your finance to meet with a NET specialist for a second opinion. NET specialists are specially trained and experienced in this rare type of cancer and know many more treatment options than a general oncologist. Some of these NET specialists will often consult with you via a virtual appointment if you do not live nearby. After the initial consultation, the specialist can provide your current oncologist with the best treatment plan.
Mayo Clinic has NET specialists in all three of its locations. If your finance is interested in consulting with a Mayo specialist, here is a link with appointment information, http://mayocl.in/1mtmR63. If for any reason, he cannot obtain an appointment at a Mayo facility, here is a list of NET specialists throughout the country,
--Carcinoid Cancer Foundation, find a doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
As you indicated that the primary source of the NETs has not yet been found, I'm wondering if your finance has had the 68GA Dotatate Scan. This is a good way to find a primary. Here is a link to some information about this specific scan for NETs,
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/?commentsorder=newest#chv4-comment-stream-header
I would encourage you and your fiancee to read the first post in this discussion which will help you understand why this scan is most helpful in locating NETs.
Outside of the back pain, how is he feeling? Has he experienced any weight loss?