1. < Neuroendocrine Tumors (NETs)
Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 26, 2022
In reply to @heidiwat "My 29 y.o. son was diagnosed w a 2.6 cm NET on his appendix following an..." + (show)
@heidiwat

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.

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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?

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1 reply
heidiwat | @heidiwat | Sep 23, 2022

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.

REPLY
3 replies
mcrey1 | @mcrey1 | Sep 10, 2022
In reply to @mcrey1 "The NET is located in the uncinate process area. There were no symptoms. Will update with..." + (show)
@mcrey1

The NET is located in the uncinate process area. There were no symptoms. Will update with action plan after the meeting today.

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Action plan is to monitor. The NET isn't aggressive yet. They want to wait a little to allow the double bypass to continue healing. The bypass was 02/17/22.

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mcrey1 | @mcrey1 | Sep 8, 2022

The NET is located in the uncinate process area. There were no symptoms. Will update with action plan after the meeting today.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 8, 2022
In reply to @mcrey1 "Have a small 1.7cmx1.3cm NET accidentally discovered during a CT scan. Appears to be non functional..." + (show)
@mcrey1

Have a small 1.7cmx1.3cm NET accidentally discovered during a CT scan. Appears to be non functional with no other cells found in the body after dotatate pet mri. Will find out what our options are tomorrow 09/08/22.
The tumor doesn't appear to have grown after two months of testing. Any hope of monitoring? I'm a 76 year old farmer trying to keep it going.

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Hello @mcrey1 and welcome to Connect. I am so glad that your tumor was found early on, that is just great, and nonfunctional is even better. Do you mind sharing the location of your NET?

You mentioned that the discovery of your NET was incidental. I'm assuming that you had no other symptoms. Is that correct?

I'm looking forward to hearing from you again and I hope that you have good news at your appointment today. Will you post and let me know about the results of that appointment?

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sophiarose | @sophiarose | Sep 8, 2022
In reply to @carcinoid23462 "I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was..." + (show)
@carcinoid23462

I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was on a pump 24/7 with Sandostatin and 2 Sandostatin injections every 2 weeks. After my diagnosis, my doctor had an Interventional Radiologist examine my liver for tumors. He found 3 of varying sizes which he proceeded to 'kill'. Those have not returned as far as I know.

The flushing has left several 'red vein' spots on my face of varying sizes. I use foundation to cover them when I need to look my best. Other days, I just ignore them.

I still receive 1 Sandostatin injection every 2 weeks to try to control the flushing & progression. From what other English patients have told me in the past, difficulties with Lanreotide is about the same as Sandostatin. The one thing I do know from past relationships with English patients, is that unless you have funds to pay for additional treatment, the normal limit of Lanreotide is 1 injection every month. I hope that has changed by now. If I had lived in England, I'm not sure I would still be here.

Wishing better days for everyone!
Sandi

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Hi Sandi
You are a blessed person 19 year. Wow!!!!
I was on lanreotide and had to stop it did nothing but make me sicker and now in PT for encapsulated abscess
I am now on octreotide and the diarrhea and flushing is gone
However neither drug has stopped the tumors in my liver from growing and more arriving
I have an unknown primary net tumor
Question how did they kill your liver tumors?
Thank you for your response
Best wishes

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mcrey1 | @mcrey1 | Sep 7, 2022

Have a small 1.7cmx1.3cm NET accidentally discovered during a CT scan. Appears to be non functional with no other cells found in the body after dotatate pet mri. Will find out what our options are tomorrow 09/08/22.
The tumor doesn't appear to have grown after two months of testing. Any hope of monitoring? I'm a 76 year old farmer trying to keep it going.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 6, 2022
In reply to @carcinoid23462 "I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was..." + (show)
@carcinoid23462

I was diagnosed with Carcinoid Cancer w/an unknown primary in 2003. For 3 years I was on a pump 24/7 with Sandostatin and 2 Sandostatin injections every 2 weeks. After my diagnosis, my doctor had an Interventional Radiologist examine my liver for tumors. He found 3 of varying sizes which he proceeded to 'kill'. Those have not returned as far as I know.

The flushing has left several 'red vein' spots on my face of varying sizes. I use foundation to cover them when I need to look my best. Other days, I just ignore them.

I still receive 1 Sandostatin injection every 2 weeks to try to control the flushing & progression. From what other English patients have told me in the past, difficulties with Lanreotide is about the same as Sandostatin. The one thing I do know from past relationships with English patients, is that unless you have funds to pay for additional treatment, the normal limit of Lanreotide is 1 injection every month. I hope that has changed by now. If I had lived in England, I'm not sure I would still be here.

Wishing better days for everyone!
Sandi

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@carcinoid23462
Hello Sandy

I appreciate you sharing your treatments for carcinoids. You mentioned that the doctor killed the liver tumors. Would you share what type of procedure was used on the liver tumors?

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mit | @mit | Sep 6, 2022
In reply to @hopeful33250 "Hello @mit and welcome to Mayo Connect. Yes, you are doing this right! I am so..." + (show)
@hopeful33250

Hello @mit and welcome to Mayo Connect. Yes, you are doing this right!

I am so glad to hear that your husband will be seen at Mayo later this month. We have a discussion group devoted to insulinoma. Here is the link, https://connect.mayoclinic.org/discussion/insulinoma-1/. You might be interested in reading the posts and having some information prior to your husband's visit.

What type of surgery did your husband have in March? Did your husband's current doctor refer him to Mayo or did you decide to do this on your own?

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He had an insulinoma removed from the tail of his Pancreas and got along very well. We were unaware that they return. Our doctors referred us to Mayo.

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