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

quick question @gsm13161 --what specific bloodwork was abnormal? thank you

I had surgery in 2018 for spine nets at T-10. Since then I have numerous spine Mets in C spine, T spine, and L spine. Cyberknife has kept everything relatively stable. Lucky metastatic Paraganglioma is slow progressing. Also get exgeva injection every 12 weeks for other bone Mets. Good luck with the prrt therapy. My dr. has mentioned I am a candidate for prrt but the disease hasn’t progressed to where they want to use it.
Best wishes

@gsm13161 thanks for your prompt reply. Will keep your treatment in mind. Best of luck to us all

Chrogranin A is extremely elevated as is dopamine, norepinephrine and metanephrine.

I had surgery in 2018 for t-10 lesion but since have had cyberknife on additional spine Mets. MRI’s show relatively stable disease. Also had robotic surgery on the liver in 2019 and 2023. Still not on chemo. The oncologist is staying with Sandosatin injection as the cancer is over all stable per recent pet imaging.

@gsm13161

thank you very much--very helpful
janine

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.

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?

Thank you for the helpful links! We’d love a second opinion and all the support we can get. I’ve searched the net many times and as just happened across this forum tonight, as we sit in the hospital, now on his 4th admission in a year. We live in KY and he was seen locally at the hospital 3 times before they finally did a biopsy of his hip and found the tumors. Following his diagnosis this Sept (nearly a year later) he was referred to the OSU James Cancer Center in Columbus, OH. He’s had some weight loss (around 30lbs overall) in the last 2 years. The initial MRI was reviewed with recommendations for tissue sample but no one followed up. Second visit they have a diagnosis of Rhabdo for the pain and with history of working out the pain primarily around the SI joint. Last night we returned to the ER with pain radiating all up his spine and stemming throughout his body. The NET specialist at OSU has him on a daily regimen of muscle relaxer, and inflammatory and narcos. As no other treatment has yet started, as you can imagine his body is showing a growing tolerance to this regimen and it takes pain relievers at the hospital (i.e. Delaudid) for 24+ hours to totally squash the flare up. I am hopeful about the possibility of virtual consults/appointments for other opinions. We travel but currently he is still working full time and so distance travel takes some advance planning and budgeting. He has zero other symptoms besides the occasional severe back pain flares and the start of weight loss this year which we actually believe to be more lack of conditioning since he doesn’t work out at all anymore at the recommendation of a local oncologist. I feel he’d benefit from PT and most certainly the radiation. With the prognosis blanket statement of “slow moving” there seems to be so little initiate to start treating more aggressively. As a female, aka problem solver and a need for immediate gratification lol, this is so hard for me to understand aside from the realities I mentioned before like not exposing him to meds or chemo before absolutely needed as these too can cause issues and worsen the problem at times.

I appreciate your follow-up post, @tatnick02. I am sorry to hear that he is in the hospital again. There are many NET specialists on the list that I provided who might do virtual appointments. If Mayo Clinic is unable to provide a virtual appointment, might I suggest Dr. Eric Liu in Colorado? Here is his contact information, https://www.rockymountaincancercenters.com/physicians/eric-liu
Dr. Liu is well-known in the area of NETs.
I look forward to hearing how your fiances's search for a second opinion goes. Will you continue to post?