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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 30, 2022
In reply to @kim1965 "Is it possible for me also to be included in this NET support group virtually by..." + (show)
@kim1965

Is it possible for me also to be included in this NET support group virtually by zoom?

@kim1965

Jump to this post

Of course, Kim. All are welcome to join the monthly NET support group.
Register here: https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi

The next meeting is October 6. See all details here: https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-117/

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 30, 2022
In reply to @littlecrown1966 "Hello everyone!! I am new to the group!! Have been on my cancer journey since April..." + (show)
@littlecrown1966

Hello everyone!! I am new to the group!! Have been on my cancer journey since April of 2016 when i experienced my first symptoms, and doctors were perplexed, was misdiagnosed for a year. The first nodules were found in my thyroid, and in lymph nodes next to mu jugular vein....thus my first surgery, removal of the lymph node, and thyroid. I have metastasis to other areas of my body....primarily right now in lungs, bronchi...in the lining around my heart, and iliac chain of lymph nodes in pelvis, and possibly liver....i have undergone two additional neck disections...the last a more radical neck disection with removal of 40 lymph nodes from the left side of my neck....multiple of which tested positive for metastasis and evidence of extra-nodal metastasis....while my recovery from last surgery has gone well, scar looks good, i am struggling to regain nerve and muscle function of left arm, shoulder, neck, and face....still have limited mobility, and of course the daily battle with lymp fluid pocketing in chest wall, and shoulder, and back. Self care can be pretty daunting...some days are better and worse than others. I have been recieving care at Sanford in Sioux Falls, SD....but now am to the point where i have been referred to Mayo to explore other options....my case is currently being reviewed. I have done much research, and have learned so much along the way....this is my first time plugging in to a support group, i hope to learn so much more, and look forward to lending support to others as they also are making their way on their own healing journey...love and peace to you all!!

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Welcome @littlecrown1966. You're not alone in having a long road to diagnosis with misdiagnosis along the way. NETs is a sly one. @andre1221 @gapsc @nathanb1979 @titansmistress @ahtaylor have been there too.

To help you connect with others who have experience with PRRT, see these related discussions where fellow NETs members are talking about treatment with peptide receptor radionuclide therapy (PRRT) with lutetium Lu 177 dotatate (Lutathera):
- Interested in hearing people's experiences with PRRT https://connect.mayoclinic.org/discussion/prrt-treatment/
- PRRT for NETs: Questioning whether I should continue or not https://connect.mayoclinic.org/discussion/prrt-for-nets/

When do you head to Mayo Clinic? Do you know if you are a candidate for PRRT?

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 30, 2022
In reply to @kim1965 "Is it possible for me also to be included in this NET support group virtually by..." + (show)
@kim1965

Is it possible for me also to be included in this NET support group virtually by zoom?

@kim1965

Jump to this post

@kim1965

You have been added to receive a notification for the next support group meeting in October. Please note that when you receive the notification, you must register for the meeting and then you will receive a Zoom link from the group's facilitator.

I look forward to meeting you!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 30, 2022
In reply to @littlecrown1966 "Hello everyone!! I am new to the group!! Have been on my cancer journey since April..." + (show)
@littlecrown1966

Hello everyone!! I am new to the group!! Have been on my cancer journey since April of 2016 when i experienced my first symptoms, and doctors were perplexed, was misdiagnosed for a year. The first nodules were found in my thyroid, and in lymph nodes next to mu jugular vein....thus my first surgery, removal of the lymph node, and thyroid. I have metastasis to other areas of my body....primarily right now in lungs, bronchi...in the lining around my heart, and iliac chain of lymph nodes in pelvis, and possibly liver....i have undergone two additional neck disections...the last a more radical neck disection with removal of 40 lymph nodes from the left side of my neck....multiple of which tested positive for metastasis and evidence of extra-nodal metastasis....while my recovery from last surgery has gone well, scar looks good, i am struggling to regain nerve and muscle function of left arm, shoulder, neck, and face....still have limited mobility, and of course the daily battle with lymp fluid pocketing in chest wall, and shoulder, and back. Self care can be pretty daunting...some days are better and worse than others. I have been recieving care at Sanford in Sioux Falls, SD....but now am to the point where i have been referred to Mayo to explore other options....my case is currently being reviewed. I have done much research, and have learned so much along the way....this is my first time plugging in to a support group, i hope to learn so much more, and look forward to lending support to others as they also are making their way on their own healing journey...love and peace to you all!!

Jump to this post

Hello @littlecrown1966

I would like to join @colleenyoung is welcoming you to the NETs discussion on Mayo Connect. As you may already know, many NETs patients were misdiagnosed before ever receiving their NETs diagnosis. NETs is rare and as such, is not always considered. It is good that you finally were diagnosed.

I am so pleased that you are learning as much as you can about NETs and seeking support. This attitude will be invaluable as it will enable you to advocate for yourself.

As you may be consulting with Mayo Clinic in the near future, I thought you might find this video about NETs interesting. The presenter is a Mayo Clinic physician who specializes in NETs. He gives a very good overview,

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 5, 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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@heidiwat

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?

REPLY
rtiger | @rtiger | Oct 6, 2022

All was going well post surgery on my lung until this past December when they found that the cancer had metastasized to my bones. Since then I have been getting a monthly shot in my rear plus a shot once every 3 months for the bones. Now the Doctor is suggesting nuclear medicine and I will have a call with the nuclear doctor tomorrow. Anyone familiar with this situation?

REPLY
kim1965 | @kim1965 | Oct 6, 2022
In reply to @colleenyoung "Of course, Kim. All are welcome to join the monthly NET support group. Register here: https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi..." + (show)
@colleenyoung

Of course, Kim. All are welcome to join the monthly NET support group.
Register here: https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi

The next meeting is October 6. See all details here: https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-117/

Jump to this post

I had trouble getting connected as I lost the link, but I finally got on the zoom broadcast. I did miss alot, I saw that it was recorded, is it possible to get a link to the full recording to see what I missed until I logged in?

@kim1965

REPLY
kim1965 | @kim1965 | Oct 6, 2022
In reply to @colleenyoung "Of course, Kim. All are welcome to join the monthly NET support group. Register here: https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi..." + (show)
@colleenyoung

Of course, Kim. All are welcome to join the monthly NET support group.
Register here: https://mchealth.zoom.us/meeting/register/tJMuf-iuqjsrHt0mpD54tmwaOqzSxarLJjQi

The next meeting is October 6. See all details here: https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-117/

Jump to this post

Will I get an automatic link to the next meeting in November or do I need to request it each month?

REPLY
lisaonthegoco | @lisaonthegoco | Oct 6, 2022

Hello! Very naive here about where I have been and how concerned I should be. Maybe someone can direct me as to what groups I should be looking at…?
About 20 years ago, I caught pneumonia walking past anyone smoking and have had so much bronchitis over the years. I was sent to a pulmonary Dr. who discovered small lung tumors but they never said tumors only spots on my lungs. I was monitored every 6 months for 2 years then told nothing was growing.
Fast forward to lots of coughing and never Covid but…like most people bought a finger tip oxygen monitor that kept falling to 85%, I live in Denver, CO. So after a sleep test and Asthma testing and the “walk down the hall test” I had imaging and found more “spots” than earlier in my life. Also got a CPAP with oxygen for night time and found out my Vasal Vagas nerve deregulates my breathing. Next up a Broncoscopy. Was told that I have very slow growing carcinoid tumors…inoperable because of how many. A month of worrying later I had a cancer specialist Dr. tell me I do not HAVE Cancer but there is a 10% chance of having it develop into a syndrome and to watch out for the symptoms she listed.
So I have an Inogen portable low flow pulse oxygen machine to hike or do strenuous exercise and sleep with a constant oxygen connection to my CPAP.
It sounds like I should be doing something more? Or is this just a waiting to see if it develops into something worse? I was also just diagnosed with Anemia at 66 years old and just went thru the endoscopy and swallowing the camera to check my whole GI system. Nothing found so next month I have a Hemotolgy appointment because I need all the oxygen producing cells I can get.
Groups and information to look at please? Ps. I don’t feel bad at all just still have coughing fits some days.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 14, 2022
In reply to @lisaonthegoco "Hello! Very naive here about where I have been and how concerned I should be. Maybe..." + (show)
@lisaonthegoco

Hello! Very naive here about where I have been and how concerned I should be. Maybe someone can direct me as to what groups I should be looking at…?
About 20 years ago, I caught pneumonia walking past anyone smoking and have had so much bronchitis over the years. I was sent to a pulmonary Dr. who discovered small lung tumors but they never said tumors only spots on my lungs. I was monitored every 6 months for 2 years then told nothing was growing.
Fast forward to lots of coughing and never Covid but…like most people bought a finger tip oxygen monitor that kept falling to 85%, I live in Denver, CO. So after a sleep test and Asthma testing and the “walk down the hall test” I had imaging and found more “spots” than earlier in my life. Also got a CPAP with oxygen for night time and found out my Vasal Vagas nerve deregulates my breathing. Next up a Broncoscopy. Was told that I have very slow growing carcinoid tumors…inoperable because of how many. A month of worrying later I had a cancer specialist Dr. tell me I do not HAVE Cancer but there is a 10% chance of having it develop into a syndrome and to watch out for the symptoms she listed.
So I have an Inogen portable low flow pulse oxygen machine to hike or do strenuous exercise and sleep with a constant oxygen connection to my CPAP.
It sounds like I should be doing something more? Or is this just a waiting to see if it develops into something worse? I was also just diagnosed with Anemia at 66 years old and just went thru the endoscopy and swallowing the camera to check my whole GI system. Nothing found so next month I have a Hemotolgy appointment because I need all the oxygen producing cells I can get.
Groups and information to look at please? Ps. I don’t feel bad at all just still have coughing fits some days.

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@lisaonthegoco, welcome. You sound like a woman of action. Sitting around waiting for the other shoe to drop is not your style.

The spots on your lungs are likely small nodules. A lung nodule can be cancerous. But most lung nodules aren't cancerous. Lung nodules are small clumps of cells in the lungs. They're very common. Most lung nodules are scar tissue from past lung infections. Read more here: https://www.mayoclinic.org/diseases-conditions/lung-cancer/expert-answers/lung-nodules/faq-20058445

If I'm reading your post correctly, you're primarily concerned with the news that you have very slow growing carcinoid tumors and that a second opinion with an oncologist suggested they are not cancerous but may develop into carcinoid syndrome. Have I got that right so far?

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