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

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?

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.

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?

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.

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?

My sister was diagnosed with PNET. They went in to do the surgery to remove half her pancreas and the tumors and started off well meaning the tumor was lifting off easily but unfortunately it had grown under and behind the liver attaching itself to her portal duct and the vein where they could not remove it without danger of piercing the vein. I would advise anyone that is diagnosed to have them try to remove the tumors to ensure they are not spreading where that can’t be found until you are opened. I don’t advise having them removed by scope because they can’t feel the organs to know how much the cancer has adhered to organ as well as how far underneath it is. A scope may have caused an accidental tear of the vein where there would have been life threatening bleeding. I’m sorry I don’t know all the medical terms but can only talk in plain English about her situation. Now we are to continue the chemo, enzymes, and pain meds but adding hormones and insulin treatments. I will be making up a thread on this as soon as we know more (surgery was 2 days ago). @janetkotz is my name on the portal. I am new to this as well? 🙏🏼 prayers to all of you!

Hi @janetkotz, welcome. Pancreatic cancer often invades major arteries and can be tricky to remove and sometimes even be inoperable. For some people, laparscopic surgery is an option. All this to say that everyone is different.

It sounds like your sister is going through a lot and that laparscopic surgery may not have been the best option. Did she have chemo before surgery as well? What chemotherapy will she continue with? I look forward to hearing how she is doing in recovery and how YOU are doing.

Ben, I read your post with interest. I was diagnosed with an inactive, "indolent" lung NET about a year ago, and have taking the path of watchful waiting (with Drs. approval). As of 6 months ago, there was no change. Due for another scan next week. The treatment recommended is a lobectomy, which is very daunting, but if the scan shows changes, it will almost surely be time to go that route. If it shows no changes, I don't know whether to go ahead with the lobectomy which may be curative but not so great for my quality of life, or keep watching and waiting. Of course, I trust the oncology docs will have a recommendation, but wondering if anyone else has dealt with this situation. I have had no symptoms from the lung NET. A reason to go ahead with the surgery is also to have it now rather than wait till I'm older and may not be so good a surgery candidate. I'm 68. Thanks for any thoughts, Ann Marie

Hello, I’m curious was your spleen removed as well??

Hello @amd12

You mentioned in your last post that you would be having another scan to assess the lung NET. I hope that the results were favorable. Would you post an update when it's convenient?