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lendries
@lendries

Posts: 6
Joined: Nov 12, 2018

My son's neuroendocrine tumor

Posted by @lendries, Sun, Nov 11 6:29pm

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

Hello @lendries and welcome to Mayo Connect.

I appreciate your concern for your son. Neuroendocrine tumors are rare. It is good that you are looking for help and guidance. I would first of all encourage you to seek a consultation with a NET specialist. Here is a list of doctors throughout the country who specialize in this rare type of cancer: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. Even if you only visit for one consultation, the NET specialist can then follow up with your local oncologist. We have had a few parents who have discussed NETs diagnosis and their children. I would like to invite, @debf, to this conversation as she has also has a teenage son with NETs.

In addition, to seeking a consultation with a NETs specialist, I would also encourage you to learn as much as you can about this rare disorder. Here is some information from Mayo's website, https://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/symptoms-causes/syc-20351039.

How is your son feeling now? How long ago was his surgery? Does he have any symptoms of carcinoid syndrome (flushing, diarrhea, etc.)?

Liked by mgreene

@hopeful33250

Hello @lendries and welcome to Mayo Connect.

I appreciate your concern for your son. Neuroendocrine tumors are rare. It is good that you are looking for help and guidance. I would first of all encourage you to seek a consultation with a NET specialist. Here is a list of doctors throughout the country who specialize in this rare type of cancer: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. Even if you only visit for one consultation, the NET specialist can then follow up with your local oncologist. We have had a few parents who have discussed NETs diagnosis and their children. I would like to invite, @debf, to this conversation as she has also has a teenage son with NETs.

In addition, to seeking a consultation with a NETs specialist, I would also encourage you to learn as much as you can about this rare disorder. Here is some information from Mayo's website, https://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/symptoms-causes/syc-20351039.

How is your son feeling now? How long ago was his surgery? Does he have any symptoms of carcinoid syndrome (flushing, diarrhea, etc.)?

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My son is feeling good. His surgery was September 9th. He has no symptoms of anything. We were seen at Mayo on October 1st and 8th for consultations. They are the ones who said to come back in March for a full body pet scan and go from there. But we are so worried about it. Did it spread or is it spreading? This waiting period is really hard not only on us parents but him too.

@lendries

My son is feeling good. His surgery was September 9th. He has no symptoms of anything. We were seen at Mayo on October 1st and 8th for consultations. They are the ones who said to come back in March for a full body pet scan and go from there. But we are so worried about it. Did it spread or is it spreading? This waiting period is really hard not only on us parents but him too.

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Your concern during this waiting period is understandable, @lendries. I am so glad that your son is having follow up at Mayo. They have good NET specialists there. Yes, the waiting period is the toughest part now. The full body pet scan will be a good way to follow up.

Do what you can to keep worry to a minimum, it will make it easier for you and your son, if you can avoid dwelling on it (and I know this advice is much easier said than done).

So, if I understand correctly, his full body scan will be done in March?

Liked by mgreene

Yes in March.

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.

His tumor was 1.8cm and located in the middle of his appendix. He has been seen at Mayo. We were told to come back in March for a full body pet scan to see if anything is still in there and go from there. The waiting is just so hard. We are always thinking about it. And every time he says he is not feeling right or this hurts for that hurts I just cringe. It's so hard to not think about it and go about your every day life. But trying hard too.

There are some differences among carcinoids, depending on where the primary tumor is located. That is my understanding from two consultations with a specialist. But NETs are slow-growing. It took 10 years for my recurrence to be visible to the doctor using the scope. In my case and perhaps with your son’s, the tumor usually does not metastacize if it is under 2 centimeters. Maybe you and your son can find some comfort in that. Also, did your son see a doctor at Mayo whose name you find on the link provided you in the first email? If so, good. If not, I strongly encourage you to consult with a specialist on that list.

Thank you for this reply. That really helps to know that there is a chance it will not metastasize since it was 1.8cm. We were told it was a very slow growing cancer. We just did not know how slow? We only were in to see 2 oncologists at the mayo and a surgeon who does appendectomies. I will look into trying to schedule an appointment with a NET's specialist. I did not know there were those actual specialists at the mayo. Thank you again so much for taking the time to chat with me. This does make me feel better.

@lendries

Thank you for this reply. That really helps to know that there is a chance it will not metastasize since it was 1.8cm. We were told it was a very slow growing cancer. We just did not know how slow? We only were in to see 2 oncologists at the mayo and a surgeon who does appendectomies. I will look into trying to schedule an appointment with a NET's specialist. I did not know there were those actual specialists at the mayo. Thank you again so much for taking the time to chat with me. This does make me feel better.

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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?

Liked by mgreene

He was seen by 2 medical oncologists and a surgeon who does the children's appendectomies there at Mayo. None of who you mentioned though. How did you know you had another NET? Were you scanned yearly? or Blood tested yearly? Thank you.

@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.

Liked by mgreene

@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?

Liked by mgreene

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.

Liked by mgreene

@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.

Jump to this post

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

Liked by mgreene

@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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