NET pancreas

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?

@hopeful33250 Hello,

Thank you very much for your feedback and for taking the time to respond. I truly appreciate it.

I live in a smaller country where access to highly specialized doctors is limited, and it is likely that we do not yet have the same level of technology or treatment protocols that are available in your country. Because of this, I am very grateful to be able to connect with you and learn from your experience. It helps me understand whether I am on the right path or if there may be alternative treatment options worth considering.

At the moment, I would also like to ask about the biopsy, as I am receiving two different opinions. One is that a biopsy is necessary to properly determine the aggressiveness of the tumor, while the other suggests that it could potentially be risky if the tumor is punctured. I am not sure what the standard approach is in cases like this, and I would really appreciate hearing how this is typically handled in your experience.

If you are willing to share, I would be very grateful to hear how this was managed in your own case.

Thank you very much again for your time and support.

@michaela258
I appreciate your response and 1 can understand your concerns regarding whether to have a biopsy or not.. I have had three surgeries for NETs in the upper digestive tract, but not in the pancreas. I hope you will read the posts in the discussion group I mentioned. Perhaps @tomrennie, @pete1962 and @lindabees will post about their treatment protocol.

How are you feeling?

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.

@michaela258 I was diagnosed with a stage 4 PNET that spread primarily to my liver in 8/22. I have been living on chemo since. Having any test or treatment comes with a degree of risk. Depending on the biopsy technique used, pancreatic biopsies can have a complication rate between one and four percent. Compared to a lot of tests and treatments, that is a great success rate. To my knowledge, there isn't a better way to confirm a NET diagnosis. Other than a biopsy, what other options were presented to you? For me, having accurate data to determine the best treatment course is critical to the success of any treatment. What other concerns do you have at this point? What are your next steps in your diagnosis and treatment planning?

@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.

@dtkach37 Hello DT and thank you for posting. I am 65 and I have roughly the same issues however my larger of the 2 tumors I have is only 2.2cm and I'm currently being treated with monthly Lanreotide injections. Currently the oncologist are not recommending surgery because my Dototate 68 scan showed 2 additional hotspots w/ SUV's of roughly 14 and less than 7 but not necessarily tumors from what I understand which means the cancer cells have most likely spread to other areas. After my biopsy i also got pancreatitis and was hospitalized for 9 days (brutal) Did you have a Dototate 68 scan if so what were your results(any hotspots) I am seeing a NET's surgeon on Monday to see if surgery is worth the risk or not. My tumors one in the body and one in the tail are slow growing similar to yours. What was the deciding factor on the Doctors opting for surgery versus a drug treatment plan? Do they say or think you are currently cancer free? Thank you for any reply.

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.

@dtkach37
Thank you for responding. Just a little background on my situation. I had a Pnet removed from my small intestine along with part my ascending colon and the removal of ileocecal valve in 2004. I also had my gall bladder removed 2022 although not malignant in anyway. I did not ever have chemo treatments or something similar. I received Octreotide scans for 2 years and then did my annuals every year. Last October my Chromogranin A test came back high for the 1st time in 25 years. The test led to a discovery of the two slow growing tumors currently in my pancreas. I mention this so hopefully you will be diligent in your ongoing testing, obviously it was important to me. I'm seeing a surgeon on Monday to get his opinion on whether surgery is even an option and to what end. He may agree that my best course of action is to continue the Lanreotide injections and then so be it. But with that being the course of action it resigns me to play for a draw. Meaning, To keep the cancer a bay. My personality is not a guy who plays for a draw, so that's why i appreciate you posting, as our cases seem similar in many aspects. Thank you and continued good health.