Welcome to the NETs Group! Come say hi.

Thank you for your response! I am told I do not have carcinoid syndrome, yet I experienced face flushing the past few years. As for diarrhea, 3 years ago I had a section of colon removed due to on-going diverticulitis. I developed an infection post op, which led to a 9-12 month battle with c-diff, so I’ve definitely had it on going. Interestingly no face flushing or diarrhea issues since surgery on Jan 6.
As for follow up, I’m scheduled for an MRI 3-4 months post op, and I think thereafter it will be every 12 months.

Hello @rushlakekathy and welcome to the NET discussion on Mayo Clinic Connect. I am glad that you found this forum, it is a great help to connect with others who are also dealing with this rare type of cancer. I'm sure you will find encouragement and support.

I have had three surgeries (over a 20-year period) for NETs in the upper digestive tract, specifically in the duodenal bulb. I have had no symptoms, and these were found during an upper endoscopy. I now have endoscopies every other year. It has been about six years since my last surgery.

My treatment involves following up with endoscopies, having blood drawn to check for serotonin levels as well as liver/pancreas functioning and MRIs of the liver and pancreas. I have cysts in the pancreas and lesions on the liver, but they have remained unchanged over several years.

Have you experienced carcinoid syndrome (symptoms are often facial flushing and/or diarrhea)? Also, what are your doctor's recommendations for follow-up?

Hi katballoo!
I am so glad you will be going to Mayo in Rochester. You couldn’t be in better hands and hopefully they will be able to see if any of these recent skin issues are related. I have a pancreatic NETS and mine was discovered through and ESU Endoscopic ultrasound, that I was having on my liver. They were able to biopsy the NET and hopefully you will find out your Stage and grade soon. I am KI-67

I have this itches at the back of my body and it sort of appeared in different part of the back including at one stage around the buttock since Oct 2022 after covid. I am also not sure if it is due to a possible recurring tumor. My Endocrine doctor referred me to a dermatologist & was advised that it could be allergy reaction so occasionally whenever the itch is bad, I applied the steroid cream. My next appointment with CT scan, blood tests and my surgeon & Endocrine doctor is next month.

Hello. Anyone out there diagnosed with grade one tumor of small intestine? I had section of small and large intestines removed, reconnected, and learned I was stage 2. I realize I’m extremely lucky as my NET was discovered during a routine colonoscopy when it literally popped through the colon wall.
Anyone else out there with similar diagnosis? Is your treatment “monitor” only? Have you experienced reoccurrence? Thank you.

During a recent endoscopy, it seems they found an NET in the stomach. I am not sure what this means. I will be at Mayo in Rochester next week for some more testing. I have a question. Does an NET signal something is amiss in the endocrine system? I ask this because I have been dealing with dry, flaky skin, rashes, headaches, hair loss, and my nails are thin and soft. I also seem to bruise easily. I don’t know much about this whole NET thing. I am 64 and a widow. Thanks for any light you could shine on this.

Thanks so much for your response. Interesting that you have felt cold since having covid 2 years ago. My husband will be encouraged by the fact that it is finally diminishing. He has so much anxiety, and your response helps.

Hello @emmepoppins ,
So sorry to hear of your husband's diagnosis. My son has also been diagnosed with a grade 1, well-defined GI NET. He has had numerous CT scans lately due to other serious GI problems, and "cysts" were seen on his kidneys and spleen. We are waiting for the PET dotate test to determine is the cysts are actually NETS. But similar to your husband, my son's mesentery was described as highly usual, during a laparoscopy. We are worried that the NETs have spread to his mesentery. And lastly, I have constantly felt EXTREMELY cold since having Covid 2 years ago. But just in the past few months, it seems to have improved. It may be a long side effect of the illness, but will eventually recover. Tell your husband to be strong; there is much hope and successful treatment for NETs! He is fortunate to have your love and support.

Hello,
My darling husband, age 72, was diagnosed with a well-defined NET on his ileum this past fall. It was discovered because a crash on his electric bike required a CT scan. His tumor was biopsied at UVA Med.Center, and now he is being seen at MDAnderson. We live in El Paso, TX. He has a grade 1 tumor, but his mesentary" lit up like a Christmas tree" on another CT scan with PET dotate; there were many lymph nodes. Further biopsy of a lymph node in the left supraclavicular area revealed metastasis from the ileal tumor. He is waiting for a treatment plan from his doctors. He is very nervous about this cancer growing in his body. When he was at MDAnderson in Dec. he contracted covid and has a hard time recovering from that. He has a persistent cough and prepetually feels cold. He is finally getting his strength back, slowly and surely, but has too much anxiety. Anyone out there like him?

Get in you car and get to a hospital that specializes in cancer.
Have your primary doctor if you have one get a referral if your insurance company needs one.