Pancreatic NF-NET stable since 2005 - surgery or not?

Posted by benr @benr, Mar 18, 2019

Hello the NET community, I am a 63 yr old male with generally good health and BMI. About a year and half ago I had a CT scan for another reason but the radiologist discovered a 2cm mass in my pancreas that looked like a pNET. After further imaging studies such as Ga-68, MRI (with Eovist contrast), endoscopic US (without FNA) the diagnosis was confirmed. It is a non-functional NET in the body of the pancreas and I have no related symptoms and no visible metastasis. I went back to 2005 and retrieved some old CT scans and sure enough it was there back then and was maybe 3-4 mm smaller. I have also monitored it in the past year and a half and it’s still stable. Also, blood markers did not show anything specific or of concern. I have seen 5 GI surgeons and 4 of them strongly recommend taking it out using distal pancreatactomy. They would remove about half of the pancreas and there is a small chance that I would develop diabetes and possibly needing digestive enzymes. The last surgeon along with a couple of GI medical ecologists are comfortable with monitoring it every 6 months and so far I have agreed with them. I am wondering if anyone in the NET community has had a similar condition and what their thoughts would be.about surgery or not. Thanks much.
Ben

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.

Hello Ben, (@benr) and welcome to Mayo Connect.

I'm so glad that you posted about your p-NET. It sounds as if your doctor has very diligently examined this situation doing the endoscopic US, Ga-68, MRI, and follow-ups. You mention your blood markers being good, does this include your Seratonin levels, Chromogranin A , etc.? Have you done the 24-hour Urine 5HIAA collection as well? I take it that you do not have any symptoms of carcinoid syndrome like diarrhea, episodes of flushing, etc.? If so, that is a good sign. Here is a listing of follow up tests that should be done, https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/.

Is your current doctor a NET specialist? Here is a listing of doctors throughout the world who specialize in NETs, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/. If your doctor is not on this list, it might be good to consult with one even if it involves some traveling. After a consultation, the specialist can then follow-up with your local doctor.

Another Member, @markbrinkley, recently posted about his NET and was advised similarly. He saw Dr. Thor at Mayo Clinic in Minnesota. I hope that he will join this discussion and share information. If you would like to read what he has said about his journey with NETs just click on @markbrinkley and that will take you to all of his posts.

I look forward to hearing from you again. Will you post again as you have any questions or concerns?

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Hello, my tumor was discovered by accident while they were checking for kidney stones. My symptom was back pain but I was also having alot of night sweats. No one was really sure if it was a PNET or a exocrine tumor. It was 3cm in size and in the tail. They tried to bx it with an EUS. That doctor said he could not access it with a needle which meant it was most likely a fast growing cancer. The next day I saw a pancreas specialist and she removed the tail of the pancreas containing the tumor and the spleen. The biopsy revealed it was a PNET. I had a long recovery but the peace of mind is 100 percent worth it. So far my blood sugar has remained stable. I do have intermittent issues with digestion, but I would not change my decision for anything. It has been five years. I have yearly blood testing and MRI's with an oncologist.

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@jadedprincess

Hello, my tumor was discovered by accident while they were checking for kidney stones. My symptom was back pain but I was also having alot of night sweats. No one was really sure if it was a PNET or a exocrine tumor. It was 3cm in size and in the tail. They tried to bx it with an EUS. That doctor said he could not access it with a needle which meant it was most likely a fast growing cancer. The next day I saw a pancreas specialist and she removed the tail of the pancreas containing the tumor and the spleen. The biopsy revealed it was a PNET. I had a long recovery but the peace of mind is 100 percent worth it. So far my blood sugar has remained stable. I do have intermittent issues with digestion, but I would not change my decision for anything. It has been five years. I have yearly blood testing and MRI's with an oncologist.

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Hello @jadedprincess

I appreciate you sharing your experience with PNET. I'm glad to hear that you had such good surgical results and that you have peace of mind now.

You said that you have intermittent issues with digestion. Are there any particular foods that cause these issues?

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I would say foods that are harder to digest. Some examples are: nuts, popcorn, and some fresh produce like green peppers, lettuce and cucumbers. And somtimes…its a surprise. Just have bad days from time to time.

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Hello @benr

As it has been a while since you first posted, I was wondering how you were doing. Was a decision about surgery made? How are you feeling?

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