1. < Neuroendocrine Tumors (NETs)

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

Posted by andy2020 @andy2020, Feb 7, 2023

Does anyone else have a NET in their spine, I cant seem to find anyone? Its just to share experiences and maybe help each other

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 13, 2023
In reply to @rrlbees "Yes it was incidental, just like my original diagnosis. In April of 2017 we were in..." + (show)
@rrlbees

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.

Jump to this post

I appreciate hearing "the rest of the story." I've had three carcinoid lesions in the duodenal bulb with surgeries, but no further treatment was needed.

It's so good that you recognize yourself as the "head" of your medical team. I could only wish that all patients were able to take that approach to their treatment and be encouraged to be proactive. It is a good thing to learn as much as possible and ask good questions and help make the best decisions possible for yourself.

As you are comfortable doing so, please keep posting, it is encouraging to others to hear everyone's story.

REPLY
rrlbees | @rrlbees | Jun 19, 2023

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!

REPLY
2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 20, 2023
In reply to @rrlbees "A question for the group. Like I’ve said I am having a gallium dotatate scan. If..." + (show)
@rrlbees

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!

Jump to this post

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?

REPLY
1 reply
rrlbees | @rrlbees | Jun 20, 2023
In reply to @hopeful33250 "You ask a good question, @rrlbees, but unfortunately it is one that no one can answer..." + (show)
@hopeful33250

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?

Jump to this post

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.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 20, 2023
In reply to @rrlbees "Yes, unfortunately our facility couldn’t get me in until July 19th. I then get my lenreotide..." + (show)
@rrlbees

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.

Jump to this post

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.

REPLY
1 reply
rrlbees | @rrlbees | Jun 20, 2023
In reply to @hopeful33250 "It sounds like you have a great team on your side, @rrlbees. That is so important!..." + (show)
@hopeful33250

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.

Jump to this post

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

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 21, 2023
In reply to @rrlbees "Thanks. It’s a bit rude of myself to continue to talk about myself and ask questions...." + (show)
@rrlbees

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

Jump to this post

Thanks for asking, @rrlbees. As far as the NETs issue, everything seems to be stable for now. Some digestive tract side-effects from the surgeries, but that is to be expected. I think of myself as a 20-year survivor as my first surgery was in 2003. A nice anniversary to have!

REPLY
gsm13161 | @gsm13161 | Jun 21, 2023
In reply to @rrlbees "A question for the group. Like I’ve said I am having a gallium dotatate scan. If..." + (show)
@rrlbees

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!

Jump to this post

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

REPLY
2 replies
rrlbees | @rrlbees | Jun 21, 2023
In reply to @gsm13161 "Quite often for spinal tumors a form of radiation called cyber knife is used. I’m having..." + (show)
@gsm13161

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

Jump to this post

Thank you very much for the info. I have looked a bit at cyber knife and it appears very promising. I realize everyone’s situation is a bit different but this gives me a bit of a heads up in what to expect and discuss if it comes to cyber knife being recommended by my docs.

REPLY
joannekeith | @joannekeith | Jun 24, 2023

My husband has a spot on his spine. We are on second round of chemo. 28 day cycle. We are also including red light accupunture and hyperbaric as part of our fight.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.