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.
Thank you for the support! No chemo–I've declined it due to kidney disease, numerous other co-morbidites, and personal preference. I'm going for a low-key approach with emphasis on quality of life and so far this is a good for me and my family. I realize this may be a bit eccentric, and I'm supportive of folks doing something different, too. And treatments I am getting appear helpful–so I guess it is kind of a middle of the road view.
I certainly respect your decision, @mir123, I don't think you are at all eccentric. Yes, we all have to treat our NETs in a way that is respectful to our body and that is different for each person.
Please let me know what your next steps will be. Will you post updates as you are able?
Lanreotide is similar to Octreotide and should help with symptoms. Many members of this discussion group have used it with success.
Thank you–that is so kind.
Re: "come say hi". Hi, I am new here. I had an appendiceal NET removed in 2020, via appendectomy followed by right hemicolectomy (the appendectomy surgeon said he was cutting through tumor in the appendix removal). Ultimately classified as stage 3, with spread to nearby colon and one lymph node. Lots of history, but the main thing that might help others is the lesson to tell all your doctors all your symptoms. I was having my ferritin levels monitored by my sleep doctor for treatment of restless legs syndrome, and mentioned to my gastroenterologist that my ferritin had dropped below the normal range, so she started looking for a GI tumor, and did not stop until she found one (upper endoscopy, pill-cam through small intestine, colonoscopy, CT scan). That was very lucky for me, since appendix tumors not found in appendectomies are typically not found before stage 4. The other lesson I learned, was to bring comfortable walking shoes to any hospitalization that requires lots of walking for recovery. Those hard floors make stockinged feet very sore! Final lesson: do not gloat over your siblings that you have lived 40 years longer without an appendectomy than they did. As for symptoms, I have not been given radiation or chemotherapy, so all my current symptoms relate to my hemicolectomy and the loss of my ileum. I had a bad set of blood clots 17 days after my hemicolectomy in my superior mesenteric vein, portal vein, and left portal vein that shut down my colon and liver, putting me back in the hospital for twice as long as the hemicolectomy. The left lobe of my liver atrophied, but after 1.5 years of Eliquis, the clots resolved and full liver function was restored.
New here, found the group when searching NET on the Mayo Clinic website. My husband has NET found in his small intestine during an emergency hernia surgery. We are under the care of an Oncologist and now a surgical Oncologist. Have had a PET scan and now diagnosed stage 4 because of spread to the liver and 4 or 5 nodes. Waiting for surgery date, need to get an echo, new CT and blood work before surgery. We had homework from the doctor to research NET's and so just adding on here for support. Maybe run things by this site for future treatment. I'm glad people gather to talk and support. We give all our glory to God who is in control of our lives. Praying for a good outcome. Terri
Hello Terri and welcome to Mayo Connect. I'm glad that you found this support group so early in your husband's journey with NETs. I will gladly join you in praying for a good outcome for your husband. I am also a NETs survivor after having three surgeries for NETs in the upper digestive tract over a period of 13 years.
I am very pleased that your husband's doctor suggested that you do research on NETs. That is a wise thing to do. As you probably know by now, NETs are a rare form of cancer and often treated differently than other cancers. Mayo Clinic's website has good information on NETs and also the Carcinoid Cancer Foundation has excellent information for patients. Here is a link to their website:
–Carcinoid Cancer Foundation
The Mayo Clinic in Jacksonville, FL hosts a virtual support group via Zoom on the first Thursday of each month from 5:30 until 7 p.m. EST. This is a great support group where there will often be guest speakers from the Mayo Clinic staff as well as an opportunity for discussion with other NET patients. I encourage you to register for these meetings so that you can receive the Zoom link.
I see that your husband's NET was discovered incidentally during a surgery for a hernia. Many of us were diagnosed incidentally as well, including myself. Was your husband having any symptoms before the finding of the NETs?
Thank you Teresa for the information on the carcinoid cancer foundation site and the Mayo Clinic Zoom meetings. I’ll definitely check those out.
My husband was not having any symptoms except a hernia he’s had for 10 years became angry. It’s really a blessing the ER surgeon looked at his small intestine and noticed that it didn’t look right. He did a resection on it, took out 3 inches and that’s where the tumor was. After the pathology came back we knew to go looking for metastasis.
I found some helpful podcasts on the NET research Foundation site. Very helpful information.
Thank you again for replying and for your prayers.
How are you doing after 3 surgeries in 13 years?
Hello again @taneall
I'm glad to hear that you are finding lots of information on NETs and that you are doing your due diligence in this area.
It has now been 5 years since my last surgery and I have some residual problems with eating and processing what I eat, I'm adjusting and feeling OK. As my surgeries were of the upper digestive tract, I have some sluggishness in processing food and eat smaller, frequent meals than previously. I tend to watch the quality of the food (low fat, low sugar, etc.) as well as quantity of food. Adjusting to a new normal is an ever-present activity of mine. I have had consultations with registered dietitians for help in developing an eating plan and those meetings have been quite helpful. Here is a link to a blog about the use of a dietician with regard to cancer treatment.
Mayo Clinic has a Cancer Education blog, and you might find this helpful. Here is the link,
Since your husband's surgery. has he had any problems with eating or losing weight?