Welcome to the NETs Group! Come say hi.
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.
In process of getting a Dototate petscan to see if others tumors have it within the next two weeks. If it is just the one, I guess it will be surgery and if more than the one, treatment TBD. Have followup appointments with both thoracic surgeon and neuroendocrine specialist. (I had endoscopy and colonoscopy last week–all good). Thank you for keeping up!
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,
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,
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 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?