← Return to Appendiceal Neuroendocrine Tumor: any experiences to share?

Discussion

Appendiceal Neuroendocrine Tumor: any experiences to share?

Neuroendocrine Tumors (NETs) | Last Active: Dec 18, 2023 | Replies (6)
Comment receiving replies
@maymaria

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.

Jump to this post

Replies to "Yes she was seen by a cardiologist who first diagnosed her. After that she was seen..."
Teresa, Volunteer Mentor | @hopeful33250 | Dec 18, 2023

I can understand your concern that about the POTS diagnosis, @maymaria. Any time there has been a cancer diagnosis, it is easy to relate everything to cancer. It sounds as if she is getting good care at this time, but please know that if you continue to feel concerned, you can always seek a second opinion.

Mayo Clinic has NET specialists at all three of their locations. If you would like to get an in-person or virtual consultation with a Mayo NET specialist, here is the link with appointment information, http://mayocl.in/1mtmR63.

If you are not able to get an appointment at Mayo for any reason, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I hope you find some peace of mind, now. I've had three surgeries for NETs in the upper digestive tract and I certainly understand how each new diagnosis or health issue can bring about fears of a recurrence of cancer.

Will you keep in touch and let me know how you are doing?

VIEW AND REPLY