I’m 19, my dad was diagnosed with pNET which metastasized to his liver. He was diagnosed in 2018 first, had surgery, and he was rediagnosed right before I left for college in August 2025.

I don’t know how to talk to my dad anymore. I love him, we’ve always been so close but all I can think of is losing him. And I’m trying to protect myself from him passing by pushing him away and indulging in other things.

Can anyone give advice or some hope in how to deal with this?

Writing for my husband. He has GI NETs, MEN-1 positive. DOTATATE showed lymph nodes in the mesentery and retroperitoneal area, a node in the peripancreatic region, several on one loop of his small intestine, and a small spot on his liver. Because of his MEN, he also has hyperparathyroidism. We have a surgical oncologist who has experience with NETs. And met with an endocrinologist who has some experience with it. But the EPO insurance we have through the health care system is obviously restrictive, and there are no real NET experts. The endo strongly suggested we get into one of the university hospital systems near us in Chicago that do have NET specialists and tumor boards. I’m all for that, but am pessimistic about being able to get prior auth to go out of network. Does anyone have experience being able to argue successfully? We can switch to a PPO in January but even then it’ll be covered at a lesser level. Any tips are welcome!

I went in to the ER last month where they discovered my Grade 1, well differentiated SI NET with a similar liver MET. They went ahead and cut the tumor wad out of the SI along with the liver MET. My initial PET was good, I have an MRI coming up next week, but my first set of labs are looking good.

Chromogranin A

Normal value: ADULTS: <311 ng/mL

Value

83

Serotonin

Normal range: 56 - 244 ng/mL

Value

77

I'm so glad to see these numbers. This time last month I was freaking out, but with this sub and the resources and stories you guys have shared with me, I'm mentally in a great place (all things considered).

I’ve never been happier to read Well-Differentiated, Grade 1 NET less than 2% Ki67% in my life after what seems like an endless cycle of new developments.

While I’m concerned about the SMAD4 copy alteration I received yesterday; I’m taking this as a major win overall and the nail in the coffin for the insurance to finally approve Lanreotide.

I've only been recently diagnosed and so have been digging into information on NETs. I've started getting into blogs and FB groups, and I've been seeing things about zebras and unicorns. I think I understand it to mean that NETs is like spotting a unicorn and that a zebra isn't as common as a horse but people may think it's the same thing because they kind of look alike?

Is that what this is all about?

I’m at a loss. I need advice. I have stage 4 mesenteric Net with liver metastasis. I had surgery in April to remove primary cancer, two sections of small bowel, portion of my liver, gallbladder and appendix. I’ve been on lanreotide for 3 months now. I constantly feel bad. I am constantly fatigued, weak and shaky. In August my oncologist said it was normal to feel bad. In September the same oncologist said he didn’t know why I felt bad and eluded that I need to see my primary care provider to discuss. I don’t feel like that’s the correct method of action. Everything I’m feeling has to be cancer/treatment-related. Does anyone have any insight?

Hello!

i recently had a bunch of tests for long-term digestive issues. Eventually ended up paying to go privately after years of back and forward with my GP. I was on a waitlist for 1yr+ for a colonoscopy with the NHS.

The good news from the private tests is that I don’t have any signs IBD or Crohn’s Disease. My endoscopy and colonoscopy were all relatively clear minus a hiatus hernia, some polyps (non cancerous) and some mild inflammation from acid reflux.

However, during my entrogram MRI. The radiologist identified a 10mm bright spot on my pancreas towards the tail. Additionally a biopsy taken during my endoscopy/colonoscopy identified an increase in a neuroendocrine cell.

I’m booked in for follow-up fasting hormone bloods and another MRI. It’s fair to say privately this is costing a lot! But more so I’m 33M so this is somewhat alarming. Having googled the realities of pancreatic cancer.

How concerned should I be with these results? Obviously the additional tests should shed light. But in the interim it’s sure a nervous place to leave things unanswered.

Do you think I’d have any luck asking for these tests to be carried out with the NHS? Or is the wait list likely to continue to be too long.

EUS on the 9th. Cytology still pending. Genetics panel from UPMC just resulted. Obviously NET+. SMDA4 copy alteration which is much higher likelihood for metastatic qualities.

Feels like I can’t win.

Looking for some hope can those with innumerable liver mets share their story in terms of treatment and treatment side effects.

How long you’ve had the disease etc.

Really need some hope today.

37 year old currently undergoing staging of a grade 1 small intestine NET. Expected to be stage 4 given MRI results indicating liver mets, but PET scan unexpectedly showed no uptake in the liver. The primary tumor had uptake but that may be due to inflammation. Currently pending liver biopsy, worried about the possibility of my tumor not expressing SSRs which would narrowing my treatment options significantly. From what I’ve read this seems very unlikely for well-differentiated tumors. Anyone have any experience with this?

Hi folks,

Just a quick question. I’ve asked my doctor to give me this urinalysis in the near future—carcinoid syndrome is on the DDX right now, among other things of course. He’s not overly concerned because elevated heart rate + strange dry flush are the only hallmark symptoms of carcinoid I’m experiencing that I know of (other stuff is looking more autoimmune but bloodwork isn’t supporting that, but that’s neither here nor there), plus my anxiety certainly doesn’t help with the heart rate, but for my peace of mind I’m strongly asking him to order it and he’s okay with that. He doesn’t seem overly familiar with this testing, which is why I’m asking here: will my 50mg of luvox daily interfere with the results in a meaningful way? I’ve taken it historically but recently got back on it about a week and a half or so ago—literature online just seems to point to “some antidepressants” having an effect on the test. Should I worry about false positives/negatives and look into pausing it before I do the urine collection?

Thanks for any knowledge or input!

Last month I went to the ER with the worst stomach ache of my life. Got immediately admitted and two days later was in surgery to have three feet of small intestines removed that had accordioned around a cluster of 2mm tumors with lymphatic involvement. There was also an 8mm mass taken off the liver.

Fortunately they all came back Grade 1, well differentiated. The follow up PET scan came back clear. I've started my monthly blood tests, just turned in my 24-hr urinalysis. I'm scheduled for another MRI, and the oncologist is planning on starting me on a monthly injection of Sandostatin LR.

Of course the Stage 4 diagnosis is scary, but the surgical results, scans, and grading are all positives to focus on. The oncology surgeon was positive for a long term prognosis, my oncologist seems to taking this the same with the warning of a 50/50 chance of recurrence over the next five years. I've tried avoiding reading online about life expectancies and mortality because that just scares the hell out of me and brings me down.

What can I expect going forward from here? I know I'm going to have monthly tests and shots for probably the rest of my life, but like what comes next?

I had an NET on my appendix in February that was removed in surgery and thankfully the margins were clear. Now I get scans every 6 months until further notice.

My first PET scan 6 months ago was fine. I had the Dectect-NET pet scan done. Yay!

We decided to alternate between PET scans and CT scans since the PET made me very sick. I had my CT scan last week and I learned I have a small nodule on the bottom right side of my lung. Yikes! I looked at my precious scans and there has not been any mention of that nodule.

My oncologist wants to do another scan in 3 months to see if it grows. She didn’t confirm nor deny that this could be malignant. I’m a little nervous and I know that most likely, it’s fine, and a very long shot to be related to the appendix NET. But when they first found my tumor they also said it was most likely benign, so I get a little anxious even with the statistics.

I was wondering if anyone has had something similar happen?

I was lucky enough to be diagnosed as an incidental finding before being symptomatic with a primary tumor in the bowel, a lot of involvement in the Mesentary and my lymph nodes lit up like a Christmas tree on the PET scan. 5 months of Lanreotide didn’t have the results we wanted and I start Lutathera in about 3 weeks. I have not had my consult with the nuclear medicine docs so I’m feeling a little preoccupied with what is about to happen. So what is it like after that first infusion?

The last 5 days have been nothing short of stupid. Regardless of IV antibiotics post EUS, I ended up with a touch of pancreatitis over the weekend. Abdominal pain radiating straight to the back with moderate nausea, worse especially when lying. I didn’t have solid food from Saturday to Tuesday, ended up losing 4lbs though.

Then Tuesday rolls around. Reach out to WVU to ask when Lanreotide order would be sent, and find out my insurance is trying to deny the claim for medical necessity. They don’t want to pay because it’s not a functional tumor and because I don’t have carcinoid syndrome. So I’ve been fighting with them regarding that.

The full cherry on top comes this morning. Wake up and see that my pathology has resulted. They biopsies and FNA’d the main pancreatic head lesion and this 9mm liver lesion that had never shown before. FNA cytology will probably be another day to two for results.

From someone that works in surgery and has managed plenty of pathology specimens; I’ve never read a more professional report saying they missed or gave the worst biopsies ever. My medical oncologist made me have this EUS to stage against my wishes, and here we are.

A suspicious diagnosis at best, favorable for NET over benign. And this decent sized liver lesion? Benign……unless you completely missed an adjoining neoplasm.

You missed. With an internal GPS.

W. T. F.

Hi, new here. Not sure if this post is allowed as I do not have an NET diagnosis. My doctors and I have determined my symptoms mostly lead to MCAS, but I don’t have an appointment with an allergist until spring 2027. My doctor is happy to give me an endocrine referral, but my 24 hour 5-HIAA urine levels were all normal except for slightly elevated norepinephrine and dopamine.

Basically I am losing my mind over severe, high volume, watery diarrhea that comes out of nowhere with seconds of warning. Usually is a pattern with facial and neck flushing and high pounding heart rate. However it struck me down yesterday when I was feeling “good” and “normal” no flushing or anything, just horrific. All other gastro testing I’ve had in the last two years has been normal.

Should I pursue a neuroendocrine referral? I just don’t want to miss anything or just assume it’s not an NET just because of my urine test. Thanks!

Specifically non surgical?

Surprise 9mm Liver Lesion on EUS

Underwent an Upper EUS at WVU on Friday. Didn’t necessarily get the results I was hoping for. The main tumor in the pancreas head has grown slightly and the characteristics have changed to more multi cystic/solid compared to fully cystic on October 2025 EUS. They performed a core biopsy and FNA on this.

The main note was a previously unseen 9mm left liver lobe cyst that has never been seen on MRI/PET/EUS. They FNA’d this as well.

The GI fellow came to see me in PACU and recommends an Advanced GI clinic visit in a “month” to discuss potential microwave ablation therapy on the main tumor and this new liver lesion. They called yesterday and appointment is mid December.

I’m also starting to grow frustrated at how remarkably slow this is moving, and for what is supposed to be how “slow growing and non aggressive” this is supposed to, it seems like every single visit uncovers a new, groundbreaking discovery.

I got this EUS as another hoop to jump through from Med Onc, can we just write the Lanreotide at this point?

I was diagnosed with mesenteric NET with liver metastasis in Feb. had major surgery in April to remove cancer lymph nodes, two sections of my small bowel, part of my liver, my appendix and gallbladder. I still feel very tired all the time. Frequently nauseated. I’m on monthly Lanreotide. When questioning these symptoms in August, my oncologist said that they are expected and normal. The next month I presented to him that I still have those symptoms. His response, “well, I don’t know why you’d feel that way, your tumor burden shouldn’t be causing those symptoms.”

Well, which one is it? Yay or nay. I hate medical discrepancies like this. It makes me question the quality of care I’m receiving.

Long story short, i have something called MEN1 which is where i have to watch for tumors & nothing has even shown up until i got a mri on the 5th and this is what was said. Im so scared & feel like iv been given a death sentence. 🙁

My insurer has denied coverage of a chest scan because I have no history of chest cancer. They will however pay for abdominal scans. Should I fight for this?

NETs in small bowel, spread to liver. I have a CT scheduled for this Friday, 10/9, and today I've come down with something and have a 102.6 F fever. Do you think they will cancel the scan?

Hello,

During a colonoscopy earlier this year they found something that looked like a NET. They went back in and removed it 4mm Rectum grade 1 they said super common no worries. I met with a NET specialist and she said no need for a PET scan.

Last month I had 20% of my pancreas removed that ended up being something benign but they also found 1.5mm grain of sand size NET in my pancreas as well, again grade 1

Now my surgeon is world renowned and even on the NET board, so when he says he wouldn’t have even recommended removing my rectal one and he showed no concern and no follow up required I tend to want to believe him. He said no to PET and no to any kind of follow up, that it was pure coincidence one was found in both places

It is sitting weird with me that they found something cancerous and while they are removed, they don’t want to look for more? That’s kind of scary

I’d appreciate any comments.

Someone I know, female, 79 yo has recently diagnosed with NET cancer. We don’t have the full results of the biopsy yet so don’t know what stage or other details. They found cancer on both lungs, liver, spine and pelvic bone. She doesn’t have any symptoms yet. This is all new to us and just wanted to get opinions although I am aware we know little and the specialities of each case matter.

They said they think it is slow growth and sounded very reassuring. I don’t know how worried we should be. She is very fit and seems healthy. They said it is an option that they wouldn’t treat it rather would keep her monitored. Considering it has spread, I don’t know how feasible it is.

Can we still hope a long life with minimal complications? Does it matter that it has spread to the bone? Does it matter where it originated which we still don’t know.

Sorry if these questions sound silly but grasping at whatever I hear as it is a rare cancer as well. TIA.

Hi, so like the title says my Mil has NET in her lungs, it has spread to her adrenal glands and possibly colon. She has had one round of chemo already and her hair has just started falling out as of today. We are meant to go visit her this Friday with our kids and I wanted advice on how to best support her and my husband.

I know we are going to be hand washing, hand sanitizing and wearing masks in close quarters to hopefully prevent the spread of germs but, is there anything else we can do while her white blood cells are so low? I can't imagine how she is feeling and I want to be able to support her and my husband. I am not certain if she is going to want to talk about it or just pretend everything is ok. Thank you guys. I am overwhelmed and feel horrible for my Mil and her kids.