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New To NETS - Stage 4 / Grade 1
Hello, my fellow NETS friends,
My name is Eileen. I am 42 years old and incidentally discovered I have Stage 4/Grade 1 NETS when I went into a second emergency room in 1 week with what I thought was a kidney stone. After CT Scan, a 4 cm mass was discovered in my small bowel. After biopsy, we discovered it was a Grade 1 NET tumor. The doctors explained that I would have surgery to remove and they would take some surrounding lymph nodes while in there to send off to pathology to make sure nothing else needed treated. My Father (who happens to be a Registered Nurse) when to my surgical consult and insisted that prior to the surgery, they do a dotatate PET Scan just to be safe. The surgeon said, you know what since she is younger and healthy, let’s be precautionary and do one. Within 12 hours of the PET scan, the surgeon called me personally to cancel and inform me that the NETs were not only in my bowel but also my spleen, pancreas, liver, both ovaries, fallopian tubes, soft tissue of my chest wall, orbit of my left eye, lymph nodes in my neck and elsewhere. They are also in my peritoneum…this is one that scared me because the Lanreotide they now have me taking (5th injection) today does not get to them as easily due to lack of blood flow to that area. After my most recent MRI last week, the peritoneal looks like it has worsened. My oncologist wants to revisit with another MRI in 3 months to see if it still worsening. If so, they will perform surgery to remove the peritoneal lymph nodes and remove the small bowel tumor, tumors on ovaries and fallopian tubes while they are already in the pelvic area.
Has anyone out there had any similar issues? If so, can you tell me about your journey and insight on what is to come? I would be lying if I said I am not petrified at the present moment.
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Sorry to hear what you are going through! I have stage 4 grade 2 metatastic to the liver with functioning gastrinomas. I also had lanreotide as the first treatment it did control most of my symptoms however it did nothing to control tumor growth! It does effectively control them in some individuals. Keep your head up there are other treatments available. You didn’t say where you go or if you have a multidisciplinary team? You must have a net specialist. It sounds like you have a complex case I had chemo and sirt in my liver just had my 45 lanreotide shot it been almost 4 years I have been stable for 2 years when I am not they will go back to the toolbox and we will keep fighting! good luck and learn as much as you can so many good people sharing their stories here!
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5 ReactionsWow, I’m so sorry to hear about the findings especially given your young age. I hope people with similar cases will respond.
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2 ReactionsThank you so much for the response. You have no idea how nice it is to speak to someone that “gets” what you are going through. I currently have a NETs specialist at Mayo Jacksonville following me, along with a hematology oncologist at Cleveland Clinic (closer to home) who does my Lanreotide injections. They are also setting me up with an endocrinologist.
I will be praying for you and all of us on this forum that the amount of tools in the toolbox keep growing.
Thank you for your kind words. I love the name…Zebra. That we all are! My prayers go out to you.
I’m glad to hear you have a good team!
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1 ReactionSo glad your dad is on your team! He is looking out for you. Each day I just do the best I can. You might find that to be a good way to look at things. That's kinda my mantra these days. Anyway, best wishes to you!
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1 ReactionHi Kevin, finally I come across someone with functional gastrinoma that I can consult or share.
May I know what is your symptoms?
I have high level of Gastrin of 750 with dull pain in stomach (tumor marker for Gastrinoma) & am on Esomeprazole morning & evening. However, my oncologist is not able to order any treatment as unable to locate the exact location in e liver (for biopsy) hence I have 3 monthly blood tests & MRI of the liver with contrast since July 2024. He believed it has metastasis to the liver from the pancreas (removed head of pancreas in 2020 Grade 1, Stage 1). GA68 PET scan is in conducive (as not lighted up).
How did u find out that it has metastases to liver?
My story is long and complicated! Symptoms for a couple years was diarrhea and gerd. Dr was trying to figure it out. Then one day 05/23/2021 I had a vomiting episode that lasted almost 24 hours every hour I got sick. I went to the hospital and thought I had a kidney stone nothing was found . Two days later while vomiting again I blew a 3 inch hole in my esophagus I needed emergency surgery to repair it surgeon saw tumors on my liver. Biopsy confirmed nets. Pet scan showed tumor in the head of the pancreas atrophied tail 3 lymph nodes and up to 30 in the liver on both sides. Gastrin was 2,000 went on lanreotide Gastrin went down to 850 for a couple months then back up. I am still on lanreotide as it controls symptoms I started with Chemo Captem 5 months It did not work then finally had SIRT radiation with complications. However it worked I am currently stable and Gastrin is about 200. I too take extreme amounts of ppi and also take carafate 3 times a day I had major stomach issues also had feed tube 2 occasions due to the perforated esophagus and radiation ulcers. Feel pretty good now still have trouble swallowing and I can’t eat certain foods. Sorry I rambled I hope that helps that is part of my story. Sorry you have to deal with that. Where do you go and do you have a net specialist? Perhaps your tumors are tiny and if the don’t have receptors they won’t light up on the Petscan
Hello Elenor, I too was diagnosed with grade 1 stage 4 NET colon cancer in September. There were tiny spots deep in the liver which they decided to wait and watch. They did a right hemicolectomy and removed all the lymph nodes and connected blood vessels which were clear. So how the cancer reached the liver is a huge question mark. I didn’t get any further treatment except I have to get a triple phase mri and a repeat dota pet in 6 months. Which I got done and which was ok. But my CA19-9 has been gradually increasing so now they will do another pet scan to rule out any other sort of cancer. Apparently NET is a slow growing cancer which is controlled by certain treatments after surgery. I do hope your tumors are controlled by the treatment you are getting. Grade 1 is normally something that is not considered misdeed so sinister. All the best and keep positive
I am so sorry to hear of your diagnosis of NETs. I hope you are feeling better from the blockage and have had time to find a team of doctors who will support you through this health journey.
I am fairly new to this myself as I was diagnosed back in October 2024.
I am so glad that you have your father who is in the medical field, to support and help you with this.
Please try to find a NETs specialist who will be more educated on this disease and treatment.
I will add you to my prayer list and trust God to be with you during this time. 🙏