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

Thank you for sharing part of your journey.
Im told I cant have surgery as Ive had radio therapy twice in the same area and Im told by my oncologist with having radio therapy the surgeons wont operate as the previous treatment would have made it to complicated.
So, the treatment Im on is to reduce the tumours as much as possible then keep them stable.

@andy2020
That sounds like a good plan. It has worked so far for us too. The only thought I had, is your cancer care team/oncologist a NET's specialist? Obviously, I'm not a doctor, but in viewing these forum posts for 9 months, the advice I keep reading about is make sure a NET Specialist is part of your team, and if not, don't be afraid to get a 2nd opinion. I wish you well in your journey to fight NET. Be strong, and keep in touch.

Yes mine came from my lung ten months after they said they had gotten it all. It’s in the sacrum and chemo pills have shrunk it from three down to two inches but the slight pain is always there because it’s pressing on some nerves

@davidclark, will you continue with chemo to hopefully shrink the tumor enough that it doesn't press against the nerves?

I am new to the group. Thanks for listening.

Some quick background. I was diagnosed with Neuroendocrine cancer 6 years ago. Primary was my duodenum with numerous mets on my liver. Went through chemo, sandostatin, Y90 and now lentreotide the past couple years. Everything over the 6 years has remained stable and some tumors have even shrunk.

Had my regular scans this week and once again existing tumors were all stable. BUT, it was found that there were two suspicious spots on my spine and was said to be a sclerotic C7 lesion and sclerotic lesion in the T9 vertebral body. They said it most likely represents metastatic disease but not definitely. My oncologist wants to do biopsies and then if positive hit them with some radiation.

Anyone have any experience with spine mets?

They suspect my brother may have some but haven't done anything for them yet, as I think the bigger concern right now is the liver tumors.

Hello @rrlbees and welcome to the NETs support group on Mayo Clinic Connect. As you can see, I've moved your post to an existing NETs discussion on spine NETs. Here you will meet others like @andy2020 @davidclark @firepowr. I would like to invite them to join you in discussing their NETs journey.

You mention, @rrlbees, that these spine lesions were found by scans. I'm wondering if you were having symptoms as well, or if this was an incidental finding during the scan?

Yes, I was incidentally found. I have an abdominal and pelvic scan every 3-4 months and every other scan they include the chest. Everything was stable as it has been, but the two possible lesions were seen on the spine. Now we are debating biopsy or dotatate scan to confirm or deny.

@rrlbees

I appreciate you sharing a bit more about the incidental finding of the spine problem. So many of us with NETs (me included), had our NETs found incidentally, so this is not unusual.

As you don't talk about spinal pain or other spine-related problems, I'm assuming that there are no symptoms. Is that correct? Will you post again with any other concerns or questions? Also, I'd be interested in hearing about your medical team's decision on whether or not to proceed with a biopsy or Dotatate scan. I look forward to hearing from you again.

Yes it was incidental, just like my original diagnosis. In April of 2017 we were in NJ awaiting to board a cruise ship the next morning. I started having severe pain in the upper abdomen just like I have had a few times before which is hernia related. I believe one gets twisted sometimes which causes the pain so I went to an ER. I only wanted a 4 drug cocktail which in the past has resolved within a couple hours. But of course, thankfully in hindsight, they also wanted to do a CT. That CT showed a lesion on my duodenum and numerous lesions on my liver. Totally unrelated to my hernia. So that’s where my road started over 6 years ago.

To answer your specific question, our team has not yet made a decision yet. My local oncologist wants to cut right to the chase and do a biopsy. I reached out to my oncologist at Memorial Sloan Kettering, who I went to for a 2nd opinion originally and kept in touch with off and in, and she wants to do a dotatate scan. I’m leaning towards the scan and as the “head” of my medical team, I will win once I’m convinced it’s the best option. I have not had any new or unusual back pain nor other symptoms. I do have lower back pain due to severe stenosis. But that’s in a different area and not related to C7 and T9.

And now you’ve heard most of “the rest of the story”. LOL.