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New To NETS - Stage 4 / Grade 1

Posted by inghameileen @inghameileen, 6 days ago

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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

fraaseo | @fraaseo | 4 days ago

Hi Eileen; I’m sure you’re in complete shock with your diagnosis. Your case sounds a lot like mine but yours is in more areas than mine. I had a small bowel obstruction and pathology confirmed it was NETS in 2022, they removed 22” of my small bowel and 4 of 24 lymph nodes were positive. I did not have any further treatment except for CTs every 6 months and regular bloodwork, monitoring CgA levels and others. I felt great, no issues other than diarrhea from small bowel resection. I almost made it 2 years before my 2024 CT showed abdominal wall thickening. My oncologist ordered a dota pet scan & referred me to a NETS surgeon specialist. The NETS had metastasized to the peritoneal lining of large/small intestines, gallbladder, appendix, liver, diaphragm, bladder, pelvis, left & right abdominal walls, pelvic omentum and previously resected bowel . A cyst like nodule was seen in the pancreas. The NETS surgeon presented my case to the NETS Tumor Board and it was decided that Cytoreductive surgery was my best option with possible HIPEC. Within a week the surgeon decided not to do HIPEC as new treatments were showing better results. I had the surgery (3-6 months recovery) & immediately started Octreotide injections every 28 days. I just had my 3 month follow up CT and only one new area in lower pelvis showed concern; my CgA level is down to 20, lowest it’s ever been. Twenty four years ago I had a complete TAH BSO for endometriosis. In 3 months the Drs plan to repeat dota PET scan and add Lutathera therapy if needed for Stage IV, grade 2. If you have any questions, please ask. Good luck to you!

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jessie59 | @jessie59 | 1 day ago
In reply to @kevinmonroemi "My story is long and complicated! Symptoms for a couple years was diarrhea and gerd. Dr..." + (show)
@kevinmonroemi

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

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Thank you for the long story & am so glad your Gastrin level has gone down so drastically to 200. I am also sorry that you too have gone through so much agony. I am seeing my oncologist in Singapore National Cancer Center that also specialising in NET. The latest 5 Mar endoscopy ruled out Gastric NET.
My next appointments of blood test is on 20 May (hopefully Gastrin level do not keep escalating) & MRI with contrast on 6 June followed by review of my results in a week’s time.
It’s concerning cos I am experiencing dull pain in stomach (especially at night) and at times diaharrea.
Do avoid spicy & oily food. I have totally cut off alcohol too.

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