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@hopeful33250

@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.

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Replies to "@rrlbees I appreciate you sharing a bit more about the incidental finding of the spine problem...."

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.