1. < Neuroendocrine Tumors (NETs)

Appendiceal Neuroendocrine Tumor: any experiences to share?

Posted by maymaria @maymaria, Dec 18, 2023

My 15 year old daughter had a 0.8cm appendiceal tumor in the distal end(mesoappendix and subserosal involvement) removed in July 2023. Since then she has had a high resting heart rate and constant nausea. After eating, nausea and burping are worse. Dotatate scan, 5hiaa, chromagranin A all normal. I have told she has POTS (postural orthostatic tachycardia) - She was athletic before but now can barely do 15-20 min of aerobics with extreme fatigue. Anyone experience something like this?

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 18, 2023

Hello @maymaria and welcome to Mayo Connect. I can certainly understand your concern about your daughter. It sounds like she has had a lot of health issues since her surgery in July. I see that you posted in the NETs discussion group and that many of the tests done, such as Dotatate scan, 5hiaa, chromogranin A, are diagnostic tests that are often used to diagnose NETs.

Did the biopsy of her appendix indicate that her tumor was a neuroendocrine tumor (NETs)?

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1 reply
maymaria | @maymaria | Dec 18, 2023
In reply to @hopeful33250 "Hello @maymaria and welcome to Mayo Connect. I can certainly understand your concern about your daughter...." + (show)
@hopeful33250

Hello @maymaria and welcome to Mayo Connect. I can certainly understand your concern about your daughter. It sounds like she has had a lot of health issues since her surgery in July. I see that you posted in the NETs discussion group and that many of the tests done, such as Dotatate scan, 5hiaa, chromogranin A, are diagnostic tests that are often used to diagnose NETs.

Did the biopsy of her appendix indicate that her tumor was a neuroendocrine tumor (NETs)?

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Yes. 0.8cm appendiceal Neuroendocrine tumor.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 18, 2023
In reply to @maymaria "Yes. 0.8cm appendiceal Neuroendocrine tumor." + (show)
@maymaria

Yes. 0.8cm appendiceal Neuroendocrine tumor.

Jump to this post

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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1 reply
maymaria | @maymaria | Dec 18, 2023
In reply to @hopeful33250 "We have another discussion on Connect discussing NETs found in the appendix. Here is a link..." + (show)
@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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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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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 18, 2023
In reply to @maymaria "Yes she was seen by a cardiologist who first diagnosed her. After that she was seen..." + (show)
@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.

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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?

REPLY
1 reply
maymaria | @maymaria | Dec 18, 2023
In reply to @hopeful33250 "I can understand your concern that about the POTS diagnosis, @maymaria. Any time there has been..." + (show)
@hopeful33250

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?

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Thank you! Yes will do and update on any changes in case someone else goes down a similar path.

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