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lendries
@lendries

Posts: 6
Joined: Nov 12, 2018

My son's neuroendocrine tumor

Posted by @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.

REPLY

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

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