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Appendiceal Neuroendocrine Tumor: any experiences to share?

Neuroendocrine Tumors (NETs) | Last Active: Dec 18, 2023 | Replies (6)
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@hopeful33250

We have another discussion on Connect discussing NETs found in the appendix. Here is a link to that discussion, https://connect.mayoclinic.org/discussion/pet-scan-2/?commentsorder=newest#chv4-comment-stream-header

You must be relieved that the other tests came back negative. Have your daughter's doctors suggested any follow-up test for NETs in the future?

Regarding your concern about the POTS diagnosis, I'm wondering what tests were done to confirm this diagnosis? Here is a link to a Connect discussion on POTS in the Heart Rhythm support group, https://connect.mayoclinic.org/discussion/pots-in-12yo-daughter/

Has your daughter been seen by a cardiologist?

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Replies to "We have another discussion on Connect discussing NETs found in the appendix. Here is a link..."
maymaria | @maymaria | Dec 18, 2023

Yes she was seen by a cardiologist who first diagnosed her. After that she was seen by an autonomic dysfunction specialist at children’s hospital in Philadelphia. Just not sure if this is pots since her symptoms overlap NETs and POts. I have been told it’s all POTs but there is always some worry. She will have repeat labs with her oncologist but no more scans because of her age.
Thanks for directing me to the Chats you mentioned.

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