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Need more information on NET in head of pancreas
Neuroendocrine Tumors (NETs) | Last Active: May 26 7:57pm | Replies (38)Comment receiving replies
I found out the PNET (pancreatic neuroendocrine tumor) on the head of my pancreas last year in May during an MRI scan for my kidneys. It was an incidental finding.
After multiple imaging including a dota-tate scan in September, the specialists at Johns Hopkins told me to wait six months and do another PET scan, since it was small and the tumor is well differentiated (slow-growing).
However, my abdominal pains and back pains come occasionally. I attended a lifestyle center program on disease reversal and since then I noticed that with diet and lifestyle changes, symptoms are almost next to none. If it wasn't for that MRI scan in May, they never would have known about the PNET and would have constantly given me anti-acids.
Today, I rarely have symptoms thanks to a lifestyle change. I'm learning a lot more about PNET after signing up for a group and they sent me reading materials. There is still a lot to learn, especially with insurance coverage and different hospital's procedures.
Finding the right doctor definitely helps: https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Replies to "I found out the PNET (pancreatic neuroendocrine tumor) on the head of my pancreas last year..."
@bellom Good day,
I am reading your post in the discussion and would like to join in. I have been diagnosed with a well-differentiated tumor in the head of the pancreas. I am currently awaiting a biopsy, and the next steps in treatment are still not yet clear.
I would be grateful if you could share your experience with treatment, procedures, and any dietary advice or recommendations that helped you during your therapy.
Thank you.
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I have a small 5 mm nonfunctioning well differentiated PNET located on the head of the pancreas. I am currently on surveillance. What were the changes to diet and lifestyle that you made? I have dieted and lost weight intentionally and I no longer drink alcohol. I am taking Creon and Colestid (my gall bladder was removed years ago and the Colestid helps with bile dumping). After finding the PNET in March 2023 in an exploratory EUS because of years of diarrhea, I had an incidental finding of an aggressive breast cancer on a subsequent CT. I had surgery, chemo and I will have Proton treatment for the breast cancer.
Please let me know about the changes you made.
Thank you.