Hello @michaela258, and welcome to the NETs support group on Mayo Clinic Connect. I'm glad that you found this forum. NETs are a rare form of cancer, and we all have questions about treatment and what to expect. We do have many members with Pnets.

Here is a link to a discussion from a member who has NETs on the head of the pancreas:
--Need more information on NET in the head of the pancreas
https://connect.mayoclinic.org/discussion/need-more-information-on-net-in-head-of-pancreas/
I would encourage you to read the posts. I would also like to invite @tomrennie to this discussion. He is also a mentor in the NETs group and has pancreatic NETs. I'm sure he will share his journey with you. I would also like to invite @lindabees, whose spouse has had NETs in the pancreas for many years.

As you are new to this diagnosis, my first suggestion would be to seek out a NET specialist. These are oncologists with specialized training and experience in NETs. Not all general oncologists have expertise with this form of cancer, and it will be to your advantage to have at least one consultation with one of these specialists. There are NET specialists at all three Mayo Clinic locations (appointment information is available at http://mayocl.in/1mtmR63). If it is not possible to be seen at a Mayo facility, here is a link from the Neuroendocrine Tumor Research Foundation with a listing of NET specialists in the U.S.: https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/page/8/

How are you feeling, @michaela258. Were there specific symptoms that led to this diagnosis?

I was diagnosed in November with a 5.5CM NET at the head of my pancreas and a 1.2CM NET on the ampula. They were found incident to a CT scan I had for a sciatica issue so I was having no symptoms although the larger one may have been contributing slightly to my back issue. NET is the best pancreatic cancer you can get with a much higher survival rate than typical carcinoma. I had a biopsy which was used to diagnose the grade to determine their rate of growth. The smaller one was 1%, the larger was 5% and I was given a WHO Grade 2 which basically meant it was slow growing. (I did develop pancreatitis after the biopsy and was hospitalized for 3 days. I think something got nicked and leaked but I have never gotten a full explanation) Although I had no symptoms, I was assured I would in a few years and decided to have the surgery now while I was younger (66) and not experiencing any negative symptoms. I had the Whipple Procedure in February to remove it. The procedure is major but after 3.5 months I have recovered almost completely and have no regrets. With the small size of your tumor maybe your procedure would be different. Because NET's are rare, everyone I asked emphasized seeing someone who specializes in NET's. I live in Nashville, TN and was fortunate Vanderbilt has 3 doctors that do NET's fairly routinely. Hope this helps.

Diagnosed with pancreatic NET in 12/23 after a couple months of symptoms. Main factor in prognosis is the stage of the cancer, meaning how far it’s spread. Local tumors are often removed with complete recovery but once it spreads (as mine had with liver metastasis) prognosis is much worse. Other factors are grade (the percentage of cells actively dividing), differentiation, overall health and whether tumor is functional ( producing hormones such as insulin). Most likely they will need a biopsy to make these determinations.
If you’re lucky they nail it with surgery, without having to pull out too much adjacent stuff, and it never comes back. If not than it’s a continuous treatment process, but it doesn’t have to ruin your life.

@michael258
I'm sorry to hear of your diagnosis
I know how scary and confusing things are for you right now.
My husband was diagnosed 18 years ago with net tumor on the tail of his pancreas and many, many mets to his liver, so stage 4. He had surgery to remove the primary, radioembolization to address the liver tumors and other treatments along the way to keep things in check, including everolimus, captem and lanreotide. He's been stable for a few years now and is on a maintenance does of capcetibine.
Each case is different and treatment is individualized. Neuroendocrine tumors are cancerous, but are usually very slow growing, as evidenced by my husband's longevity.
It sounds like getting specialized treatment will be a challenge for you so its very important to educate yourself about this disease and be a partner with your doctor in directing your care. A great place to start is https://netrf.org/for-patients/newly-diagnosed/
I don't know what country you are in but there are international net groups you could look into to help find a doctor. One is a European group.
https://www.enets.org/list-of-coes.html
As for biopsy, that will provide important information that will help guide your doctor in choosing the best treatment options for you. It will tell you how aggressive (or not) your tumor is which will dictate the treatment path you choose.

I did have a PET scan prior to surgery to confirm there were no other tumors other than the head of the pancreas and ampula and specifically to make sure that the liver was clear which it was. Because the NET was well differentiated both the medical and surgical oncologist agreed that surgery with no chemo or radiation would be the best option. I have had a CT scan in March to confirm it was all removed and will have another at the end of June. Ultimately, I had 25% of both my stomach and pancreas removed along with my gall bladder and 12" of my duodenum. after 3.5 month I am feeling fine, playing golf at the same level I was before surgery and maintaining my new weight (lost 20-22 lbs). I'm still on Creon but only for lunch and dinner and I am hopeful that I will be off of them at some point.

Hello, I'm sorry to hear what you're going through. Let me share my wife's experience. She had a neuroendocrine tumor of the pancreas, secreting ACTH. In addition to the tumor itself, this caused her to develop ectopic Cushing's syndrome. The tumor was 2 cm in size, located in the head of the pancreas, and a biopsy was performed using a fine-needle aspiration endoscopy. The result was a grade 2 neuroendocrine tumor.

Since it was a functioning tumor, and the Cushing's syndrome was significantly impacting her quality of life, after a meeting between endocrinologists and a pancreatic surgeon, it was decided that the best course of action was to remove the tumor.

Four months after the diagnosis, in March 2024, the tumor was enucleated, and thankfully, everything went well. Today, she has recovered from Cushing's and has checkups every six months. Fortunately, she remains stable so far, with no signs of disease. She did not require chemotherapy or radiation therapy.

Regarding your question, I think it's important to have a biopsy to determine the type of tumor, its grade, and other relevant factors.

Well, I've shared my experience with you, and especially my wife's. I wish you the best of luck on this journey.

Sorry for my English, i used google translator

Hello! My name is Carol, I live in Alberta, Canada where options for my treatment have (unfortunately) been very limited and ( even more unfortunately) I honestly think that my disease has long ago already progressed too far to allow me to benefit from anything that’s on offer here. I continue to lose weight steadily, no matter what I try to eat & my cancer pain (despite using opiates) is fast getting completely unbearable. I’ve finally been referred for an assessment at a pain clinic in my city, but I don’t know whether I will even be accepted there as a patient. I was diagnosed with stage 4 NET, primary tumor in pancreas but there’s suspicion that I might’ve had it elsewhere too, as my liver has always been “fully involved” which many more lesions of a higher grade than those in my pancreas. I also have NETs in my small bowel & in my skull. Please let me know what sort of information you are specifically interested in receiving, as I don’t want to burden you with extraneous stuff that you might already know all about. I wish you the best of luck with your situation. Best Regards, Carol