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.

Well, I imagine this is a blow. You will have to trust your mother’s instinct. I was not treated at Mayo so I cannot offer you personal experience. Perhaps someone else knows this doctor? As someone who went through this twice and had to educate my own local non-specialist docs (admittedly in 2005), however, I felt vast relief when I consulted with a specialist on that list. If nothing else, I would tell your son’s doc that you are seeking a second-opinion consult with someone on that list. If you decide you feel more comfortable with the specialist, then switch. If all the insurance issues are in your favor, of course.

@gaylejean

@hopeful32250 I reviewed the list of Mayo NET Specialists and my doctors name is not on it (Dr. Henry Pitot). Now this bothers me.gaylejean

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@gaylejean, I'm guessing that your doctor is consulting with the NETs specialists at Mayo, but to be sure, why not ask?

@gaylejean

@hopeful32250 I reviewed the list of Mayo NET Specialists and my doctors name is not on it (Dr. Henry Pitot). Now this bothers me.gaylejean

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@gaylejean, here is a link to Dr. Pitot Mayo Clinic profile https://www.mayoclinic.org/biographies/pitot-henry-c-m-d/bio-20053913 His specialties include:
– Gastrointestinal cancers
– Esophagus/gastroesophageal junction or gastric cancers
– Pancreatic cancer
– Neuroendocrine cancer

Important to keep in mind is that specialists at Mayo Clinic work together in multi-disciplinary team with the patient at the center of the care team. This means that every patient at Mayo benefits from the expertise, experience and knowledge of a collective group of experts. You can read more about Cancer Care at Mayo here: https://www.mayoclinic.org/tests-procedures/cancer-treatment/care-at-mayo-clinic/pcc-20393350

Maybe the list is not up to date.

@mgreene

Maybe the list is not up to date.

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You're probably right, @mgreene. Lists like these can be a challenge to keep up to date. Organizations appreciate being notified when there are updates to help maintain them.

@hopeful33250, you or I could send them a note. I had to smile when I went to their contact page https://www.carcinoid.org/contact/
This was their latest tweet

@lendries

Yes in March.

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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?

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

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?

@hopeful33250

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?

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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.

@lendries

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.

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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?

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