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Neuroendocrine Tumors (NETs) | Last Active: 13 hours ago | Replies (411)Comment receiving replies
My 29 y.o. son was diagnosed w a 2.6 cm NET on his appendix following an appendectomy. They gave him a couple weeks to heal from the appendectomy before performing a R hemicolectomy. The surgeon called today to inform my son that 3 out of 33 lymph nodes removed were affected. They are scheduling a CAT scan. Beyond that, we don’t know the treatment plan. I’m wondering if anyone else has experienced an appendiceal NET at such a young age (29) and/or has anyone had one 2.0 cm or larger? Also, my understanding is that ANY lymph node involvement is not good. Thoughts?? Is it possible for my son to get a virtual 2nd opinion from Mayo? How does he go about doing that? He is currently living in Atlanta and being treated at Winship Cancer Institute at Emory University.
Replies to "My 29 y.o. son was diagnosed w a 2.6 cm NET on his appendix following an..."
You recently posted about your son's appendectomy which led to the discovery of a NET. I hope he is feeling better post-surgery.
Any success on getting a second opinion from Mayo or another research-oriented health care system?
Hello @heidiwat
I hope that your son is recovering well from his surgery. Has he sought a second opinion with Mayo or another cancer center? Any plans yet for further treatment?
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Hello @heidiwat and welcome to Mayo Connect. I can certainly understand your concern for your son. Cancer in young people is always concerning and as mothers, our adult children are still "our kids." I am glad that you are looking for information and help for him. We all need patient advocates looking out for us.
@jatx25, a Connect member has recently posted about a NET on his appendix. I hope he will join this conversation and share with you, his experience.
You mention that your son will be having a CAT scan scheduled. Is this going to be a Gallium 68 scan? This is a scan that specifically looks for NETs. NETs do not always show up in traditional scans. Here is some information about this scan:
--Gallium Ga 68 Dotatate (Intravenous Route)
https://www.mayoclinic.org/drugs-supplements/gallium-ga-68-dotatate-intravenous-route/description/drg-20312288
Getting a second opinion from a Mayo doctor is an excellent idea. Here is the link to the online appointment site, http://mayocl.in/1mtmR63.
Mayo Clinic also hosts a NETs virtual support group on the first Thursday of each month at 5:30 p.m. EST via Zoom. It originates from the Mayo campus in Jacksonville FL and is facilitated by a Mayo social worker. I have added your name to the notification list so that you (and your son) will be able to register for the meeting. In this support group you will meet many others who have been dealing with NETs and they are more than willing to share their knowledge and journey with you.
Did your son have any symptoms prior to the appendectomy? Is he having any new symptoms now?