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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.)?
Replies to "Hello @lendries and welcome to Mayo Connect. I appreciate your concern for your son. Neuroendocrine tumors..."
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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.