I Had a Rare Tumor Removed | Neuroendocrine Tumor Story 

Hi guys!! Thanks for watching, have you had a similar experience? Tell me how you found out ⬇🏥

I had an NET. caused massive stomach pain..age 40. Apparently was growing for up to 7 years as they are slow growing. Mine was a grade 1, surgery fixed me via a right hemicolectomy and so far, 5 years later, so good.

Steve Job’s pancreas cancer was neuroendocrine also but he refused tx in lieu of alternative tx. They are very rare but have a much better outcome. I’m so glad to hear you are ok and it was neuro! I love you lil pupated. I’m a king time chi Mom. Well, keep up with you MD appts, oncology spots. I’m an SLE survivor and metastatic cancer survivor (10 years cancer free from tonsil cancer, surgeries, chemo & radiation). Sux, I know but you get back to living at some point. Stay well, babe😊.

Had the same thing, you should still see a net specialist. Eventually they will reoccur

Neuroendocrine tumors are very tricky. I too am a net patient diagnosed over 2 years now. It started in my pancreas then spread to liver. I had no real symptoms. Thank God he opened doors for me. Definitely see a net Specialist- I’m at MSK- NYC. started on Octrotide injections which I still do monthly. Then did PRRT and it worked great. It’s all about knowing your tumor and controlling this disease. My understanding is it never goes away. There is great progress in treatments and technology. Radionuclides! So I press on.

This has been extremely helpful! Thank you for sharing your story. Will you be at an increased risk for developing other NETS since you had one?

Bravo for your brave share, thank you 🫶

Please see an oncologist. I have neuroendocrine tumors that were first discovered in my pancreas, they spread to my liver and L5 vertebrae in less than a year. You should insist on a f18 fdg petscan and especially a netspot gallium ga 68 dotatate petscan. The second one is specifically for neuroendocrine tumors. They are not always slow growing, depends on if they they are well diffentiated or not. Please see a specialist. I had a whipple procedure to remove tumors in my pancreas and liver. Still they have grown in liver and spread to back. My surgeon told me not to worry, theyre are slow growing, 2 months after surgery i was having issues again, at which time they recommended i go to mayo clinic, they had no clue how to help me. Ive since switched hospitals i now have an oncologist, endocrinologist, and radiation treatment specialists i see. Please dont do like i did and trust surgeons. If youre surgeon or gastrologist is telling you this Run. You need to have these specific scans every six months. God bless you.

Meant “love your little pupster”!

I was just diagnosed with a net in my rectum. I haven’t had my appt but everything I’m reading points to rectum nets typically not metastasizing so I’m keeping my fingers crossed

I had mine in the appendix and i went for a normal appendectomy and they found out after the surgery during pathology test it was grade 2 and stage 4 my gallium dotate is negative but i hope it doesnt reccur i was advised to have follow up every 6 month

I have NETS. I had a major resection in March 2021 after I requested to have a pill camera procedure done during my endoscopy. If I hadn't had the pill camera procedure done they would have never found the main tumor in my small intestine (which actually was an obstruction). I ended up having over 70 grade 1 NETS removed from my small intestine and liver. Please advocate for yourselves and ensure the doctors listen to you.

I hope you are still doing well. My NET (Carcinoid) has returned after 10 years. I had surgery to remove 6 NETs. Thought that was it. Have they offered you a PET CT with Dotate?. It is the best test available to detect NETs. My oncologist has been ordering this test for the last 5 years. 4 year in a row my old insurance carrier denied the test and told me to get a CT instead which is useless for NETs. New insurance compamy this year and they approved the test. Carcinoid is back. Its probanly been back for about 4-5 years. According to the test it hasnt metastasized anywhere else (Atleast its not detectable) I have surgery coming up in a few weeks. ** Ironically my Oncologist told me that if the test was clear my visit in February would be my last. Now im gonna be seeing him for another 10 years. Please stay on top of this and make sure you get all your tests.

Omg this is so crazy i went in for a colonoscopy found out i have ibd they also found a polyp in the same place it ended up being the same thing neuroendocrine tumor grade 1

I just had my neuroendocrine tumor removed in my stomach. They found it during an endoscopy

Thank you for sharing. I am in the diagnostic stages yet but NET is high on the suspect list as my gastrin and chromogranin a levels were extremely high. I've also been displaying some symptoms. I was diagnosed with another uncommon GI diagnosis two and half years ago. There is question as to whether that was a misdiagnosis or not. I have my Ga68 dotatate PET/CT scan in three days.

How is this type of tumor found in the pancreas? With which scan

I deal with this tumor mines arise from my pancreas that metastatic to the liver

Hey I was diagnosed with one of these tumors I tried to reach out to you

فى بلادنا ليس لدينا اطباء متخصصين فى النوع من الاورام واريد اى احد يساعدنى فى خبراته حيث ان زوجتى تعانى من هذا النوع من الورم فى البنكرياس وهناك نقائل فى الكبد

I hope you're under surveillance by a NET specialist. They come back unfortunately. I hate it.

Hello, by any chance did they check your chromogranin A level aka CgA. They tested me for it and it was at 29.7 which I believe is in the normal range. Do you mind sharing yours, if they did do it?

Here cuz I had the same thing

Mine came back twice

Hi sister i had rare net in lungs

Can a tumor of this nature cause pain especially when sitting down??

Hi just wanted to know where was your tumore,which part of your body can you please let me know. I just been diagnosed today I have the same tumore but they thinking it’s near my apendics

I had a NET in my lung

Was anything linked to the COVID19 vaccine

Hi, anyway to contact you , maybe facebook messager? regarding this rectal nets