My son's neuroendocrine tumor

Posted by lendries @lendries, Nov 11, 2018

My 17yr old son suffered a ruptured appendix. After surgery to remove his appendix, pathology found a neuroendocrine tumor in it. And 1 of the 3 lymph nodes that came out with the appendix had less than 3 percent cancer cells in it. We are waiting 6 months for things to heal inside then having a pet scan done to see if it had spread anywhere else. Has anyone else had this? If so did it spread? I understand this is pretty rare for a child to get this tumor.

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

Teresa, Volunteer Mentor | @hopeful33250 | Feb 7, 2019

In reply to @lendries "Yes in March." + (show)

Hello @lendries

As you mentioned in a previous post, your son will have an appointment at Mayo next month. How is he feeling these days?

Teresa, Volunteer Mentor | @hopeful33250 | Feb 21, 2019

Hello!

As I know that some of you are new to the NETs diagnosis, I wanted to share with you a presentation given by Mayo's Dr. Thor.
https://mail.google.com/mail/u/0/#inbox/FMfcgxwBVqMhZHqwvsllZJLfXTQvnjvg?projector=1

Teresa, Volunteer Mentor | @hopeful33250 | Apr 10, 2019

Hello @lendries

As I recall your son was going to be seen at Mayo in March for a follow-up. I hope that went well and that he is feeling better now.
As you are comfortable doing so, could you provide an update?

lendries | @lendries | Apr 10, 2019

In reply to @hopeful33250 "Hello @lendries As I recall your son was going to be seen at Mayo in March..." + (show)

My son is feeling great. He was seen at Mayo this past Monday. They did a full body PET scan for Neuroendocrine cancer cells and found nothing. They did find a 2mm nodule on his right lung that they are not too concerned about but to be safe they want him back in 6 months just to take another look at it to make sure it is not growing into something. We were happy with the results. He has been feeling well all winter and did participate in his school sports without any problems. All is great right now. Thanks for checking in.

Teresa, Volunteer Mentor | @hopeful33250 | May 5, 2019

In reply to @lendries "My son is feeling great. He was seen at Mayo this past Monday. They did a..." + (show)

Hello @lendries

I'm so pleased with the good report! Thanks for sharing that update. I'm sure your son is relieved.

Has he handled the diagnosis and follow-ups without too much stress?

vafa | @vafa | Dec 13, 2024

Hi, my child was diagnosed with NET G2 in 08/2023. We did RHC a month later. Now we just go every 6 month for US. How is your son doing now?

Teresa, Volunteer Mentor | @hopeful33250 | Dec 13, 2024

In reply to @vafa "Hi, my child was diagnosed with NET G2 in 08/2023. We did RHC a month later...." + (show)

Hello @vafa and welcome to the NETs support group on Mayo Connect. I am glad that you joined Connect, it is a great place to find support and encouragement. As the member that you posted with has not been active on Connect for several years, I wanted to respond to your post.

You said that your son had RHC. As I'm not familiar with that term, I'm wondering if that is a medical or surgical procedure?

How is your son feeling now? Are there any other treatments in addition to the ultrasounds?

vafa | @vafa | Dec 17, 2024

In reply to @hopeful33250 "Hello @vafa and welcome to the NETs support group on Mayo Connect. I am glad that..." + (show)

Hello, its Right Hemicolectomy surgery. She doing well, we are under surveillance for every 6 month.

Teresa, Volunteer Mentor | @hopeful33250 | Dec 22, 2024

In reply to @vafa "Hello, its Right Hemicolectomy surgery. She doing well, we are under surveillance for every 6 month." + (show)

I am glad to hear that your daughter is doing well, @vafa. Is she able to eat without digestive problems or does she need to watch her diet?

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