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@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.

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Replies to "Yes it was incidental, just like my original diagnosis. In April of 2017 we were in..."

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.