1. < Neuroendocrine Tumors (NETs)

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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 12, 2018

@lendries
Since my NETs were in the duodenal bulb (upper part of the digestive tract) they were only found with an upper endoscopy. They put an endoscope down the the esophagus (it has a camera on it) and they pass it through the stomach and through the duodenal bulb. Then they can see and biopsy the NET.

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mgreene | @mgreene | Nov 12, 2018
In reply to @hopeful33250 "Hello @lendries Here are some of the doctors at Mayo, Minnesota, who specialize in NETs. Perhaps..." + (show)
@hopeful33250

Hello @lendries

Here are some of the doctors at Mayo, Minnesota, who specialize in NETs. Perhaps your son was already seen by one of them.

Thorvardur R. Halfdanarson, MD (Medical Oncology)
Rochester - SPECIALIST

Timothy J. Hobday, MD (Medical Oncologist)
Rochester - SPECIALIST

David M. Nagorney, MD (Gastroenterologic and General Surgery)
Rochester - SPECIALIST

I have had three NETs (all in the duodenal bulb). My first surgery in 2003 was .8 cm, the second in 2005 was .3 cm and the third surgery was not until 2016, less than 1 cm.

Was your son seen by any of these doctors? Will you post again if you have any questions or concerns?

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Yikes. THREE in the same place? Has your specialist ventured any theories why you keep getting them? Does the small size of yours mean, as in my case, the likelihood it has spead is small? Do you have an annual upper GI like I have an annual colonoscopy?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 12, 2018

No, @mgreene. My upper endoscopies are done every two years now, unless a new one is found, then it is done six months after the surgery. The small size is considered to have a low metastasis threat. However, all the medical folks were a little surprised by the last one in 2016 as it had been over 13 years since the last surgery. I was considered free of recurrence after 10 years however, that was not the case. NETs are very slow growing so I don't know if anyone of us should ever stop checking for them. However, that is just my opinion and is based on my own situation and it is definitely not a medical opinion.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 12, 2018
In reply to @mgreene "Did the path report tell you the size of the tumor? The fact that your son..." + (show)
@mgreene

Did the path report tell you the size of the tumor? The fact that your son has no symptoms is a hopeful sign that the disease has not spread. I was found to have a rectal carcinoid in 2000 as a result of my first colonoscopy. My gastroenterologist, internist, consulting oncologist and a research oncologist at the University of Texas Southwestern Medical School all were wrong about my prognosis. Five years later I could no longer ignore my instincts and found one of three specialists at the time. He refuted everything I had been told by the five Dallas doctors. In 2010, the cancer returned and was removed via surgery. Probably due to an errant cell left behind when original tumor was removed. I had no symptoms. I continue to have an annual colonoscopy and blood-work. Now, the medical profession is more aware of neuroendocrine cancers. But I urge you to consult with a NET specialist.

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That is so great that you advocated for yourself and found a NET specialist, @mgreene. Yes, those "errant cells" can cause problems.

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gaylejean | @gaylejean | Nov 20, 2018

@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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2 replies
mgreene | @mgreene | Nov 20, 2018

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.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 20, 2018
In reply to @gaylejean "@hopeful32250 I reviewed the list of Mayo NET Specialists and my doctors name is not on..." + (show)
@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?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2018
In reply to @gaylejean "@hopeful32250 I reviewed the list of Mayo NET Specialists and my doctors name is not on..." + (show)
@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

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mgreene | @mgreene | Nov 20, 2018

Maybe the list is not up to date.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 20, 2018
In reply to @mgreene "Maybe the list is not up to date." + (show)
@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
https://twitter.com/CarcinoidNETs/status/1064960539649064962

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