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clorey (@clorey)

Neuroendocrine tumour in Pancreas

Neuroendocrine Tumors (NETs) | Last Active: Sep 17, 2018 | Replies (13)

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@colleenyoung

Welcome to Connect, @clorey. Some pancreatic neuroendocrine tumors (NETs) may be benign (not cancer). Did your doctor tell you the type of pancreatic NET tumor that you have? There are different types as this article from the National Cancer Institute explains: https://www.cancer.gov/types/pancreatic/patient/pnet-treatment-pdq

Insulinomas are usually benign (not cancer). So I wonder if that is the kind you have. Do you know?

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Replies to "Welcome to Connect, @clorey. Some pancreatic neuroendocrine tumors (NETs) may be benign (not cancer). Did your..."

Thanks so, so much for your reply. The tumour is an endocrine tumour like Aretha Franklin had (which really scares me). I will check out the site you have listed for me about tumours. I am really scared about this as the pain is really bad sometimes. My Dr. has had me on Lanzaprazole, Baclofen and now Lyrica. I have only been on Lyrica for one week now, so I don't really know if it is helping me. This Dr. is just an Md, but she sent me to a surgeon who did an ultrasound, cat scan and endoscopy and found nothing wrong except I have a hiatal hernia and this tumour which I found out about 11 years ago. Do you think maybe the hernia is causing my pain? I am overweight and I am 77 years old. Getting old is the pitts. Please write back to me and thanks again. Clorey

@clorey

It is understandable that you would be concerned with this kind of tumor. I have neuroendocrine tumors (NET) as well. I advise you to see a doctor who specialized in NETs. Here is a website where you can find where NET specialists are located all over the world, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/ If there is none close to you, it would be good to travel in order to get a consultation.

If you see a specialist and he agrees with your other doctors, that is great. But it sounds as if you need another opinion in order to put your mind at ease.

Will you let me know how you are doing and whether or not you get your questions answered?

Teresa

Thanks for this info. I will keep you posted as to my progress. First I am going to ask my Dr. to send me back to the Gastroenterologist I have seen many times before to see what he has to say. I see there is a special blood test that can be done. I will let you know. Thanks again.

Thanks so much for this info. I did have a blood test done that came back negative for cancer. I am going to go to this website and read what they say about NET tumours. I know mine is an neuroendocrine tumour and the cancer Dr. said that there is less than 1% chance of it ever becoming cancer. I am relieved but still have the pain. I will get back to you when I find out more. Thanks again Colleen.

Hello @clorey

As I mentioned in my other post, I believe you would be better served by seeing a NET specialist. Regular GI doctors, and most doctors in general, have an extremely limited understanding of NETs. In reading about Aretha Franklin's doctor, she saw a NET specialist who was mentioned on the website that I sent you, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

Yes, please keep in touch and let me know what you find out. The choice of doctors when you have NETs is one of the most important decisions you will make.

Teresa

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