Welcome to the NETs Group! Come say hi.

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.

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.

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?

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?

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.

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.

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.

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?

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

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.