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.
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.
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.
Yes I will follow up with my doctor. I had the itching before my pain crisis that put me on this wild ride.
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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.
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
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?
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.
Hi, I was recently diagnosed with, carcinoid syndrome, the tumors (NET) started in my small intestine and metastasized to my liver (multiple spots). The spots were found during a routine cat scan for diverticulitis. It’s been a roller coaster ride since the diagnosis Dec.2022. Just had my first treatment of Lanreotide, at Mayo Jacksonville Florida, no side effects so far..
Interested in hearing from those who have had experience in the NETs community with Sandostatin injection therapy.
I found out today that I have 2 NET’s in my lung. Found inadvertently while scanning for my cecum cancer.
I now have both unrelated to each other.
Looking for support of info on lung resection and colon surgery.
Hello. I am Angela and I am from NE Iowa. When I was thinking of things I wanted for my 50th birthday, a carcinoid tumor definitely was not on my list! It has really been a whirlwind process the last few months. I am not sure when I was first diagnosed with this tumor, but it became very real when I was told I needed to have surgery! In my mind I was thinking “ok, I’ll schedule it a few months out so I have time to accept it. “ I said I wanted to put if off as long as I could and was told, “Ok, your surgery is in 3 weeks. I have never had major surgery so it was a double whammy when I found out I was having the lower lobe of my left lung removed.
I am one moth out from surgery now and feeling good.
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