Need more information on NET in head of pancreas

@pamsbass Hello,

I noticed your post. I’m in a similar situation, as I’ve recently been diagnosed with a lesion in the head of the pancreas. I’m still at the beginning of the diagnostic process and currently waiting for a biopsy.

I would like to ask about your experience regarding the course of your examinations and treatment so far. Did you eventually undergo surgery, or are you considering it? Or have you been placed on a different treatment plan?

I am also trying to understand all available options, as I would prefer to avoid surgery if possible, although I am aware that it is often considered the standard recommendation.

I would be grateful if you were willing to share any information with me. Thank you very much in advance.

@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.

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/

@pamsbass
Hello, I am the wife of someone who was diagnosed 2 years ago with an NET on the pancreas head at 43yo. With small liver lesions as well with just watching it/then the last two years. It has now grown to 2.5cm and He’s being sent for more lab work and and a PET scan with follow up to talk about surgery. We were told in the beginning that if it grew to cause problems an needed surgery he would need a whipple. What made yours a modified whipple. I did some research two years ago but I’m anxious currently since the “news” is new again. Thinking we wouldn’t need surgery hopefully ever. Is there anything I should particularly remember to ask?

@pamsbass
Hello, I am the wife of someone who was diagnosed 2 years ago with an NET on the pancreas head at 43yo. With small liver lesions as well with just watching it/then the last two years. It has now grown to 2.5cm and He’s being sent for more lab work and and a PET scan with follow up to talk about surgery. We were told in the beginning that if it grew to cause problems an needed surgery he would need a whipple. What made yours a modified whipple. I did some research two years ago but I’m anxious currently since the “news” is new again. Thinking we wouldn’t need surgery hopefully ever. Is there anything I should particularly remember to ask?

@pamsbass
Hello, I am the wife of someone who was diagnosed 2 years ago with an NET on the pancreas head at 43yo. With small liver lesions as well with just watching it/then the last two years. It has now grown to 2.5cm and He’s being sent for more lab work and and a PET scan with follow up to talk about surgery. We were told in the beginning that if it grew to cause problems an needed surgery he would need a whipple. What made yours a modified whipple. I did some research two years ago but I’m anxious currently since the “news” is new again. Thinking we wouldn’t need surgery hopefully ever. Is there anything I should particularly remember to ask?

@pamsbass
Hello, I am the wife of someone who was diagnosed 2 years ago with an NET on the pancreas head at 43yo. With small liver lesions as well with just watching it/then the last two years. It has now grown to 2.5cm and He’s being sent for more lab work and and a PET scan with follow up to talk about surgery. We were told in the beginning that if it grew to cause problems an needed surgery he would need a whipple. What made yours a modified whipple. I did some research two years ago but I’m anxious currently since the “news” is new again. Thinking we wouldn’t need surgery hopefully ever. Is there anything I should particularly remember to ask?

Thank you so much trying to find out all I can they do yea t to do whipper on me they don’t think I would make it am a diabetic I go to dr in New Orleans

I posted before about I have 1.1 cm insulinoma tumor in my pancreas head. I am going to find a surgeon to remove it but I have some concerns:

1. Would I have any side effects or complications after the surgery ?

2. Would my tumor come back after surgery?

3. Will I become diabetes after surgery ?

4. I'm in New York, may I have any recommendation about the surgeon what you have great success with the doctor?

Thank you so much

I posted before about I have 1.1 cm insulinoma tumor in my pancreas head. I am going to find a surgeon to remove it but I have some concerns:

1. Would I have any side effects or complications after the surgery ?

2. Would my tumor come back after surgery?

3. Will I become diabetes after surgery ?

4. I'm in New York, may I have any recommendation about the surgeon what you have great success with the doctor?

Thank you so much