I was diagnosed and treated for Ocular Cancer (Uveal Melanoma) almost exactly 4 years ago just months before I retired. I have given most of the sight from my left eye to UM and I live with the knowledge that if it metastasizes to my liver there will be little that can be done.

I just spent the last month going through a bunch of diagnostic tests and in late September will be undergoing surgery to remove parts of my small bowel and large intestine along with my Ileocecal valve. I am not sure what I will be giving up to NETs yet, but the surgeon is hopeful that it won't be much from this surgery.

I will never be declared "free" of either of these cancers. They are both very rare (UM is ~6 people per million diagnosed each year). I feel like I should somehow acknowledge that. What I have seen of "warrior" T-shirts and things just doesn't do it for me. I feel like I am in "negotiations" rather than a war. I'm trying for peaceful coexistence as eradicating my challenger is just not within the capability of anything but luck right now.

I've seen t-shirts, pins, ribbons - even tattoos. Have any of you found something that helps you acknowledge your reality in a way that keeps you grounded and can help find peace when you need it?

I am 23M and recently last week experienced some black stools frequently for two days.

Turns out I was bleeding internally. An endoscopy found a stomach ulcer + a bleeding mass 4.7cm protruding from pancreas into duodenum.

CTs and MRIs seem to display multiple lesions spots in the liver which l signal significant metastasis.

Diagnosed with pancreatic NET of grade 1 Ki-67 1% and will probably start on lanreotide soon.

It was pretty devastating to hear last week, especially just from the perspective of mortality and sharing this news with my family. However, I plan to live till 65+ and have decided I will not give up.

Now, I’m more grappling with how much my lifestyle will change. I am pretty healthy and fit, but drank a lot on the weekends socially. I’m afraid most of my friendships will disappear as I most likely can’t/shouldn’t drink again.

I know it sounds superficial and this is probably the least of my issues, but I’m really just trying to process things bit by bit.

I’m feeling a lot more positive given my age and the grade, but am concerned/confused about the amount of liver lesions.

My oncologist said her goal is eventual cure though it may be a long battle. Seeking more professional opinions these coming weeks as well. Located in NYC.

What do you all think?

I'm trying to wrap my head around this (and deal with the waiting), and for that I think I need people who get it. And that's you lot.

In 2021 I was diagnosed with DIPNECH and had a lobe of my lung removed to get a 1.5 cm carcinoid tumour + 5 tumourlets (and path said "innumerable microscopic spots of carcinoid). This was after 5 years of coughing, and since these tumours grow so slow it's definitely been many years that I've had them. I have 4 more sub-1 cm tumours in my lungs that are on 'watch and see'. My oncologist told me I didn't have to worry about carcinoid syndrome because the lung tumours don't normally do that.

I've had GI issues for about the same amount of time as I've had the cough, and it's been one reason or another that the GI wouldn't take the referral... until I ended up in the ER in April with blood where there shouldn't be. I finally got that referral & saw him this week. He thinks I have NETs in my small intestine and that they're causing carcinoid syndrome. He's sending me for all manner of testing to see. It fits. The GI issues, the flushing. I'd written off the flushing to be menopause (still could be), but it's only my face where my friends say a menopause hot flash is whole body.

So now I wait, and I worry. I can't talk to anyone irl because they all just tell me not to worry until there's something to worry about. But how can I not?

Update: I got the date for the enterographic CT - Nov 19. That's fast for here.

Not for me.. I am in USA.. a friend of mine I am concerned about and want to hear from others in a similar spot

Hello, some of you might remember me from my previous posts. I was diagnosed with PNET and on 8/6/25, had a whipple to remove it and a couple of spots in my liver. Pathology finally came back and my surgeon said it was confirmed to be a well differentiated, grade 2 pnet. It also was much larger and much more complicated than any of my scans had shown. He also said there’s no way to know for sure that we got every cancerous cell. He said I’m going to have to go on a monthly medication that’s kinda like a hormonal chemo but didn’t say what kind.

I’m having a hard time wrapping my brain around this and pathology report hasn’t uploaded into my medical record yet.

Is there anyone in this similar situation that can provide some insight? I have another call with my surgeon on Friday after he presents my case again to the tumor board.

I’m worried about life expectancy and recurrence rate and if anyone in this situation was declared cancer free at any point.

My daughter is 1 and I want to be around for her but need to be realistic and set up protections in case I’m not.

Thank you in advance.

Hi everyone, I have a pathogenic gene deletion for hereditary pheochromocytoma paraganglioma syndrome, all the symptoms and abnormal test results and now, finally, suspicious imaging.

Has anyone had an F-Dopa scan at the Mayo Clinic, either AZ or MN? If your insurance wasn't accepted was it difficult to get charity funding? I'm unfortunately on out-of-state Medicaid.

I live in CO but would literally rather die than go to UC Health for anything else ever again and plan to move next year. Has anyone had good experiences with UCLA? Is there a hospital that's not rated a 'center of excellence' that you would still recommend from personal experience? It would have to be a blue state.

As for the scan itself, what can I expect? Nothing showed up on the Ga-68-dotatate but it did cause severe abdominal pain and vomiting the first time. There was nothing on the FDG-PET but I didn't expect there to be. Finally on the 2nd part of the MIBG I got "suspicious intense uptake in the left adrenal gland".

One surgeon who's quite famous in this realm was going to just take it out, but I didn't appreciate the lack of communication and poor attitude from practically everyone there. (Read Yelp reviews if you want the truth about places.) I sought out a different surgeon and she wants to send me to Mayo for the F-Dopa bc there's a high likelihood my specific gene deletion could eventually cause me to lose both adrenal glands.

But if these spread they're guaranteed to be terminal so doesn't fall into a "wait and see" kind of approach to me, I just want it out and even if they don't see a well-defined nodule what else could it reasonably be with almost literally all the symptoms and a pathogenic deletion? Would you just insist on surgery at this point regardless of the F-Dopa?

I also have unexplained bone pain and an extremely high level of B12, which is a well documented red flag for cancer. The higher it is the more likely to be metastatic according to the meta-analysis I read and I'm hoping this scan would give me more confidence I don't have bone mets and they just aren't showing up. At the same time if any metastasis shows up anywhere it will probably influence the decisions I make so I think it's worth the hassle of going for it.

Thoughts? I wish I found the FB groups helpful since there are more people but they're more like fan clubs for certain hospitals and oncologists.

Stress has been absurd since I broke my back last july, then dad died of heart attack at xmass, then a best friend, then my 15 year therapist, then my uncle, now mom is 75 and alone, Im 50 single no kids, my dog means everything and now she has heart condition.

About 2 or 3 months Ive had not stop facial flushing, neck, head, and bad itching especially head and face, some tiny dot like rashing on shoulders when it gets worse.

My face and neck are just about always fully fushed.

Liver and kidneys fine, calcium is higher, tryptase normal, im so far still only with the GP doc and alergist.

Im waiting results on cortisol, prostate, more thyroid stuff.

Its all taking for ever, still havnt done 24 hour urine, and no scans yet.

Im so scared

Sometimes i get faster pulse rate like 106

i take lexapro at night, seems my symptoms are a bit worse at night, eyes get glassy too.

Other day on hard job, bottom of hands looked blotchy, any time I scraped my arm, the pressure marks would look more red, get in car and cool off and all goes away, exept face and neck still flush.

Im gonna try and push doc for other tests, I know its super hard to get PET scan.

In 2023 I had upper body CT, all was normal.

Last Friday I had a couple split second faint feelings, but my anxiety is crazy already so idk.

Praying its not carcinoid, any thoughts?

Also, how do I deal with this absolute crippling fear

Got the pathology reports and I’m not sure if there is a difference or if NETs and NEC are interchangeable diagnosis.

Hi, I’m 28yo F and I was diagnosed with an NET in my appendix and part of my colon. It was found during a scheduled colonoscopy that was supposed to be to check on my crohn’s. I was also diagnosed with Crohn’s disease last year in September, but at my last colonoscopy they believe they missed the tumor because I had so much inflammation. Anyway - they said I will need a laparoscopic colon resection and an appendectomy to remove the tumor. I have never had surgery before and am scared not only for the recovery but to find out if the cancer has spread to my lymph nodes. If it has, they said I may need chemo. After already having Crohn’s, my body is exhausted from this last year and I am terrified of doing chemo. Can anyone tell me if they have had an NET removal from the colon and appendix and what the recovery is like? What’s it like staying in the hospital? Anyone else that also has Crohn’s? I’m scared the trauma this surgery will bring to my body may cause another flare (I just got my remission!)
Any information helps! There is so much NET information online.

Hi all, sorry for long post. I (28F) had a 1.5 cm NET (grade 1) found after appendectomy in April of this year. It was well differentiated, with good margins but there was lymphatic/vascular invasion present and invasion of mesoappendix/subserosa w/o involvement of visceral peritoneum.

I had the Chromogranin A blood test (within normal rage) and PET Dotatate scan with no evidence of other tumors at this time. I have established care with surgical oncologist (GI) who recommends having a right hemicolectomy due to the increased risk of L/V and Mesoappendix invasion even though the appendiceal tumor was less than 2cm. Reports there is a 20-30% chance another tumor appears.

Retired ER doc family member reviewed literature and talked with one of his oncology colleagues who suggest monitoring and the chance of spread is very low (not exact number given but made it sound like less than 20-30% though I have not spoken with them directly. This is just over email/through other family members).

I spoke on the phone with an NET specialist (friend of a friend so no formal appointment) who says the choice is up to me regarding whether I feel more comfortable monitoring (every 6mo for 10+ years) or having surgery.

Not trying to come to reddit for medical advice, but more so if there is anyone who has been in a similar situation. I am in the gray area of tumor size of between 1-2cm but there are additional risk factors. Monitoring for 10+ years seems daunting, I don't plan to be living in this city/state for many years to come and have no idea where I will be in life in even the next 3 years. I currently work bedside at the same hospital that has the cancer center (I'm an occupational therapist on the acute surgery floor so I see procedures like this all the time) so I trust that it is a great facility, and I am in a relatively good position if I do opt for surgery.

Those that decided to monitor how has your mental health been between scans/tests? Have new tumors emerged later on? Those that have had right hemicolectomy how are you functioning now? Thank you all.

Hi all! I have moved from Hong Kong to the UK 5 years ago for Uni. Recently I requested a full medical record from HK hospital and include my appendectomy due to appendicitis I had in 2020 when I was 18. I missed the follow up for the surgery as I just flew to the UK by then.

The report found a 1.5mm grade 1 KI67<1% carcinoid in the appendix, with margin clear. However they didn’t mentioned anything about lymph nodes. I have been referred by the GP to NET specialist and just wonder what is the most likely outcome they would have. I had done some research and the paper said grade 1 NET in appendix less than 1cm with R0 is curable with appendectomy alone.

Has anyone had any experience with Sandostatin LAR or Octreotide? I have a larger carcinoid tumor in my right lung but removal isn't an option at the moment due to respiratory failure. I mean I already have most of the side effects listed for it as symptoms of this beast but the blocking of insulin production aspect is scaring me. I feel like when I signed the consent it was a deal with the devil. Especially when it's listed as the risks of not retrieving the treatment is potential death. I guess diabetes is the cherry on top of this sundae.

So I had an NET removed from my lung 2 months ago. There are more small ones in my lungs so they're leaving them there and then scan me every 6 months. They've also found one in my saliva gland. They found the larger lung tumor very quickly and took it out within 2 months of finding it. But it was so fast. my surgeon was basically like okay, we took it out. See you in 6 months.

They told me to walk and breathe and that was about it. Everything smells weird and everything tastes strange and my surgeon said that's not possible because my tumor was in my lung nut in my brain.

I feel like since it's happening to me it must be happening to other people but I don't know who to talk to because it's such a rare cancer.

Anyone else have changes in appetite and smell? I'm craving oysters, french fries and all smells that are bad smell a hundred times worse but good smells don't smell a hundred times better lol

Thoughts?

My best friend is 46 with two young kids and was first diagnosed about a year ago, she had surgery and chemo but it has returned and they have now given her 18 mths which is beyond devastating. We’ve been doing some research and we’re based in the UK yet it seems Germany is far more advanced in the sort of treatment and immunotherapy they can offer. Has anyone here had any experience of travelling to Germany or any other country for more advanced treatment and if so would you mind sharing your experience? Both positive & negative please. Sending positive healing vibes to all 🙏🏼

neuroendocrine tumors in my small intestine. Just did blood and next up PET SCAN

It's nice to chat with people who are dealing with similar issues (I have a paraganglioma, my vagus nerve wraps around it - had another removed in 2022, this one can't be removed surgically?). Would love to chat with people with similar vagal/neck paragangliomas.

This is sort of random but I was watching The Hunting Wives on Netflix and the second to last episode was dedicated to the actor that plays a youth/teen pastor. I looked up what happened to him and apparently he passed away seven months after his initial diagnosis of a stage IV pancreatic NET! He was only 35 years old! Anyone know what grade it may have been? Or why he passed away so quickly? There has to be a reason why sooooo many more young people seem to be getting NETs.

RIP Paul Teal 💔

My dad (78) fell into coma after bland hepatic artery embolization surgery for NETs with liver metastases. Tests shown working liver function after the surgery and doctors are puzzled about the cause.

Doctors only explanation is that it's caused by whatever released into the blood from the dying liver tumor after embolization.

Is this a reasonable explanation? Will my dad recover from this?

My husband was just diagnosed with multiple Neuroendocrine tumors. A 4cm in his abdominal lymph nodes, small intestines and possibly 3 small tumors in his liver.

Is there more issues when the lymph nodes are involved?

Hi! Hoping to pick someone’s brain about my PET/DOTATATE scan. I have been severely suffering from just about every NET symptom for over a year, and recently had a Chromogragin A blood test in the 500s, as well as elevated VIP, which led me to receiving the scan which i had last week.

The radiology report was read(at a relatively small hospital and not by a NET specialist) and states in the findings “There there are 2 adjacent 14 mm nodule localized in the midabdomen, ANTERIOR to the aortic bifurcation. See images 131-best identified on CT image 135. SUV max = 3.3. There is some spiculation at the margin of the lesion consistent with a desmoplastic reaction seen with carcinoid tumors.” However, the end of the report stated “negative PET scan” confused how both could be true, we called the radiology dept, in which they resulted in pulling the initial report all together, taking that part out, and simply stating “negative scan” the report dosnt mention that it was amended or altered.

Of course i am a little uneasy about this conclusion, and that area also happens to be exactly where my pain is most intense. I was able to access my images online, and there seems to be some area of concern at the exact images(131-135) that they originally stated in the report. Also, looking at the full body view, there seems to be a distinct focal/pinpoint area of uptake in the same region once again. If anyone has more experience looking at scans/any input on this i would love any information/advice! Thank you

Hello,

34 y.o. female here. In April I went to the hospital for an emergency gallbladder removal. During the process, they discovered that my appendix was swollen and eventually removed it. Path came back as a 4cm, Grade 2, stage IV appendix NET with Lymphovascular Invasion, Perineural Invasion, and the tumor was diffusely present at proximal resection margin. I am now 2.5 weeks post-right hemicolectomy, where path revealed that 2 lymph nodes in or near my ileum showed Grade 1 nets. My initial DOTATATE didn’t demonstrate further evidence of disease, including the two impacted lymph nodes that were not until after surgery. The surgeon and my oncologist are not suggesting further treatment except monitoring at this time. I may be just overreacting to the unknown, but do you all think they are possibly under-treating? Shouldn’t I at least be starting Somatostatin analogs? Thanks in advance!

My dad has had pancreatic neuroendocrine cancer for 12 years and more recently his cancer has evolved / mutated to a slightly different make up, now most of it doesn't light up on a dotatate scan so our typical treatments options may not be effective. Has anyone else experienced this? We really need to find a treatment that could work on him but his doctors (Dr. Fisher at Stanford and Dr. Baum at Curanosticum) appear to be a bit stumped, so we're looking for other specialists / centers that might have some ideas or new technology.

THIS IS NOT MEDICAL ADVICE — DON’T CHANGE ANY MEDICATION WITHOUT TALKING TO YOUR DOCTOR

My mom has a type 2 diabetes for a few years, and for the past 2 years she's been using Ozempic to help manage her blood sugar levels.

2 months ago, she was diagnosed with pancreatic neuroendocrine tumor (PNET) and she is about to start PRRT in 2 weeks.

During this week visit we were advised to pause taking Ozempic for now, at least until we know more about her tumor, because relatively new research show that semaglutide (the active ingredient in Ozempic and similar drugs) might promote the growth of certain neuroendocrine tumors.

• I'm not in any way an expert in this field and I don't suggest changing anything in your meds without consulting with your oncologist/Endocrinologist first.
• I thought that because Ozempic is relatively common in handling diabetes it was important to raise awareness and people should know this and consult with their doctors about alternatives.