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.

ptk1776 | @ptk1776 | Mar 12, 2023

No, I am not getting any treatment currently — just regular CT scans. And I did not get an ileostpmy. I lost about 16 cm of ileum and 18 cm of ascending colon, but the surgeon connected the parts and it mostly functions like normal. The only lingering problem is I have to deal with bile acid malabsorption, for which I am getting treatment.

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pontiac | @pontiac | Mar 24, 2023
In reply to @hopeful33250 "Hello all, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes..." + (show)
@hopeful33250

Hello all, @amyh2439 @tresjur @joannem @gaylejean @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4. It has been a while since I have heard from you. Let's pull up in a circle and check in with each other. Do any of you have any special concerns that you would like to share? What about any new treatments or test results? The issue of Neuroendocrine tumors had a lot of publicity in February. If you learned something new that you would like to share, let's do that as well. I'm looking forward to hearing from you. Teresa

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Constant battle with hypoglycemia caused by excess insulin even after Whipple procedure. My blood sugar is dangerously unstable, have yet to find anything that helps.

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pattirushing | @pattirushing | Mar 25, 2023

I am new to this forum. Have 2 carcinoid tumors in left lung that are inoperable. Am going to have SBRT radiation as recommended by my cancer team. Has anyone had this?

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 25, 2023
In reply to @pattirushing "I am new to this forum. Have 2 carcinoid tumors in left lung that are inoperable...." + (show)
@pattirushing

I am new to this forum. Have 2 carcinoid tumors in left lung that are inoperable. Am going to have SBRT radiation as recommended by my cancer team. Has anyone had this?

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Hello @pattirushing and welcome to the NETs discussion on Mayo Clinic Connect. If you are comfortable sharing more, how long ago were your lung carcinoids diagnosed? Were you having symptoms that led to the diagnosis?

We have a discussion group on Connect where you can meet others who have lung carcinoids. Here is the link to that discussion group,
https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
As you read the posts in this discussion, feel free to ask questions or make comments by clicking on the "Reply" button.

Here is a link to some information from Mayo Clinic's website about SBRT radiation,
https://www.mayoclinic.org/tests-procedures/sbrt/pyc-20446794
Do you have a date yet for the beginning of the radiation treatment? Has your cancer team given you an expected duration of treatment?

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pattirushing | @pattirushing | Mar 25, 2023

I had some small lung nodules noticed on a scan 2 years ago and was being monitored yearly. 3 grew and were biopsied. One was a typical carcinoid and another was a carcinoid. The third was a granuloma. I saw a surgeon who declined to operate as he would need to remove an entire lung and I sm not having symptoms,

The tumor board recommended SBRT on the 2 carcinoids. I have some other very small nodules that they suggest I start octreotide for.

I have been discussing my plan since November 2022 and they would like to start next week. It will be 5 treatments.
I
I am still not having any symptoms. This has been such a confusing experience.

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thawk32 | @thawk32 | May 10, 2023
In reply to @thawk32 "Hi everyone, I’m a 59 old male who was diagnosed with stage 4 Neuroendocrine/ acinar cancer..." + (show)
@thawk32

Hi everyone,
I’m a 59 old male who was diagnosed with stage 4 Neuroendocrine/ acinar cancer in the Pancreas body along with small spots on my liver. I’m going on two years of chemo treatments. The cancer I have is rare and only consists in 1% of all pancreas cancers.
I have been of Chemo for almost two years and have tolerated the treatments very well. I’ve also had genetic testing done so I could provide with my family if this was hereditary so they could look out for this in their bodies. The good news was this wasn’t hereditary. I’ve been treated locally and have been to Dana Faber in Boston for a second opinion. Another good thing is my mail lesion on the Pancreas has shrunk about 60% fro the original size and the small spot on liver also decreased.
I’m always wondering if there is any other treatments that I can do along with the chemo to shrink the cancer. Feel free to charm in or contact me.
Praying for all cancer patients. 🙏🏻

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Anyone out the with Acinar Pancreatic cancer. Found in only about 1 percent of Pancreatic cancer so having no luck finding someone wit the same diagnosis.

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Zebra | @californiazebra | May 23, 2023

LACNETS is having their annual NETS virtual conference on Saturday 6/17/23 from 8:00-1:00 PT with many NETS specialists speaking. You can register for free at their website LACNETS.org

Specialists from top facilities include medical and surgical oncologists, radiation, interventional radiology, gastroenterologist, etc. They'll discuss terms and concepts, surgery, imaging, treatments, clinical trials, etc. See details in the images below.
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Zebra | @californiazebra | May 27, 2023
In reply to @amd12 "Doctor recommended another test before making the surgery decision. A Netscan. We'll see what that indicates..." + (show)
@amd12

Doctor recommended another test before making the surgery decision. A Netscan. We'll see what that indicates about the state of the rest of the lung tissue before deciding what surgery makes sense. Has anyone any experience with DIPNECH? That's on the list of possibilities.

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Hi @amd12 -- Are you still using this message board? Just wondering what the status of your case is and if they ever determined if you had DIPNECH. I have DIPNECH/Lung NETS typical carcinoids. How many tumors do you have? How large are the ones that are remaining?

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woundedwarrior1969 | @woundedwarrior1969 | Jul 15, 2023

I've had 3 neuroendocrine tumors(1 calcified,avocado sized)for 50 years. At 75 and opting out to keep my rib and entire left lung(tumors in lower section), I have been trying 8 different homeopathic tacts and after a year the last cat scan or pet scan 8/22 revealed improv

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 12, 2023
In reply to @woundedwarrior1969 "I've had 3 neuroendocrine tumors(1 calcified,avocado sized)for 50 years. At 75 and opting out to keep..." + (show)
@woundedwarrior1969

I've had 3 neuroendocrine tumors(1 calcified,avocado sized)for 50 years. At 75 and opting out to keep my rib and entire left lung(tumors in lower section), I have been trying 8 different homeopathic tacts and after a year the last cat scan or pet scan 8/22 revealed improv

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Hi @woundedwarrior1969, I moved your message about living with 3 NETs tumors for 50 years to this discussion in the NETS Support Group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

It is always inspiring to hear from a long-time survivor. Welcome.

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