Anyone diagnosed with NET, Grade II of the esophagus/stomach?

Hello @mkurtz and welcome to the NETs support group on Mayo Connect. I am glad that you found this forum. It really does help to connect with others who are traveling down the same road.

As NETs are a rather rare form of cancer, I always suggest seeking a second opinion from a NET specialist before deciding on a course of treatment (or even a watch-see plan). An in-person or a virtual appointment with a NET specialist can help put your mind at ease regarding your treatment as well as follow-up options. A NET specialist is different from a general oncologist, in that NETs are their specialty, and they understand this type of cancer better than other doctors.

Mayo Clinic as NET specialists at all three of their locations, if you would like to seek either an in-person or virtual appointment, here is a link with information on scheduling that appointment, http://mayocl.in/1mtmR63.

If for any reason, you cannot be seen at a Mayo location, here is a list of NET specialists in the U.S. and throughout the world, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I would encourage you to follow-up with a NET specialist before deciding on any treatment plan, even the watch-wait approach.

Many of us, me included, never had any symptoms of NETs. Our NETs were found incidentally during a scan or endoscopy for some other reason. Were you having symptoms that led to this diagnosis? How are you feeeling now?

I was not having symptoms, except extreme fatigue. I have to get my esophagus stretched because I get choked easily on foods. So I went for a routine esophageal stretch and asked if they were doing the entire EGD scope, and they said yes. I received the pathology report through "My Chart" and of course immediately started to research what it said "well-differentiated neuroendocrine tumor, Grade II". My gastro doctor did not seem too concerned. However, he repeated the EGD in two weeks to make sure he had gotten all of the surrounding tissue, and when he did the repeat EGD he found another polyp to remove. All pathology from the second EGD was clear - no NET identified.
I requested an appt. with my hematologist/oncologist doctor to review these findings. I was established with this doctor due to my iron deficiency anemia (which is now in remission). He ordered a CAT scan of my abdomen/pelvis which was basically normal; and ordered a Chromogranin A and Gastrin labs. My Chromogranin A was high at 156 and my Gastrin level was within normal range. He is recommending no treatment and to watch and wait, and have an EGD every six months.
I also have systemic sarcoidosis which is currently being controlled by the medication Hydroxychloroquine. I have many other medical conditions as well.
I believe would like a second opinion with the Mayo Clinic. How is this done virtually? Do I need to send my medical records beforehand, etc?

mkurtz. Your situation sounds identical to mine. Was throwing up blood September of 2022 so had EGD that found numerous polyps in the stomach (over 90). Since, several were removed, and one came back NET in December of 2022 and have been on wait and see since. Have scans every 6 months and EGDs every 3 months to remove more polyps. Thankfully all have been normal. I'm seeing an oncologist at Vanderbilt Ingram that I trust as he has a team of NET specialist. This wait and see is frustrating but so far just the one tumor so really can't complain, I guess. Hope for the best for you.

I hope for the best for you as well. Thank you for taking the time to comment, I really appreciate it. If you don't mind, please keep me updated on your progress. 🙂

How old are you? Why watch and wait? I had symptoms of GERD and rheumatoid arthritis for over a year before they found NETS in my liver, SI and Stomach. They kept miss diagnosing until I had an ultrasound of the abdomen thinking I had gallstones Once the primary SINET was removed these symptoms disappeared. I've learned that over 58% of NET patients are diagnosed after the cancer has spread. And ... ultimately it metastasizes in over 75% of patients.!? Why not MRI and or PETscan? My MD/PhD oncologist NET specialist studied at Vanderbilt(cited above) as well.

I am 64 years old and had a PET scan Feb of 2023 that did not show any further NETs but for some reason my stomach and colon keep making lots of polyps. I also had an ultrasound of the stomach at Vanderbilt but same, just normal polyps. Was taken off Omeprazole in April after EGD that I've been taking since 1995 in hope that will help with the polyps. I've had swelling in lymph nodes under right arm that concern me but will wait on the scans that my team have scheduled in August. Hopefully nothing.

I am 65 years old. Sure sounds like you've been through a lot. I was taken off Omeprazole also (had been on it for several years)...trying to control my GERD with Famotidine but it certainly doesn't work as well. In trying to read and learn more about NET, there was a connection between proton-pump inhibitors causing an increase in the
chromogranin A blood test - mine was above the normal level at 156, but I've read where some levels can be in the thousands. It listed some other drugs that can affect the chromogranin level as well. I have a consult scheduled with my GI practice on June 7. My colonoscopy is due next year, but I want to go on and have it done; I'm worried I may have some colonic polyps. In the meantime, in the middle of all of this, my body decided to try to move a kidney stone that I've had for years with no problems....and when it did move, I was quite ill - transferred by ambulance from one hospital to another that could take care of it, and I became septic during this process. This happened in April, and I'm still somewhat recuperating from that whole episode.

Wow, you've gone through a lot as well. I totally agree on the Famotidine. My chromogranin A level was over 1400 but my oncologist sort of trashed that due to being on Omeprazole. If I were you, I would not put off the colonoscopy if possible. Had one last year and 8 polyps were removed with 3 pre-cancer. Had another in April. The GI removed 10 and that was not all. Having another in a year. Why all the polyps? Wonder how long my luck can hold before more NETs are discovered.