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

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.

A question for the group. Like I’ve said I am having a gallium dotatate scan. If the two lesions on my spine are found to be neuroendocrine, I may then proceed to radiation. Does anyone know what the radiation schedule is? How often and for approximately how long? Daily? Weekly? Bi weekly? Etc. Thanks!

You ask a good question, @rrlbees, but unfortunately it is one that no one can answer with any certainty. Each type of lesion is different and therefore are treated differently. Some members who have had radiation for spinal lesions may be able to share their experiences, but it might not reflect what your medical team may suggest that is best for you.

If you feel a need for a second opinion on treatment, you might want to consider a phone/virtual appointment to go over treatment options with a NET specialist.

If you don't mind sharing more, do you have a date scheduled for the scan?

Yes, unfortunately our facility couldn’t get me in until July 19th. I then get my lenreotide injection the next day and visit my oncologist that day also to review the results. I do also have a NET specialist whom I absolutely love. She is Dr Raj at Memorial Sloan Kettering. I will be having the scan slides sent to her for her thoughts also. Then she, my local oncologist and myself will decide on the next steps including consulting with other disciplines such as surgical oncology or radiation oncology etc.

It sounds like you have a great team on your side, @rrlbees. That is so important! I look forward to your updates as you continue this NETs journey.

Thanks. It’s a bit rude of myself to continue to talk about myself and ask questions. But how are you doing?

A question for the group. Like I’ve said I am having a gallium dotatate scan. If the two lesions on my spine are found to be neuroendocrine, I may then proceed to radiation. Does anyone know what the radiation schedule is? How often and for approximately how long? Daily? Weekly? Bi weekly? Etc. Thanks!

Quite often for spinal tumors a form of radiation called cyber knife is used. I’m having cyberknife to L4 in a few weeks. Usually there’s 3-5 treatments on consecutive days lasting roughly 1 hour. You will need to have a CT scan so they can map out the treatment. Cyberknife sounds scary but it is like any other radiation however they can deliver higher doses because it is precisely targeted. I’ve had C2, L2,L3 and T12 cyberknifed and since they are all stable. Each cancer responds to radiation differently but it sure beats surgery.
Good Luck