1. < Neuroendocrine Tumors (NETs)

Found PNET on tail of pancreas but told it’s nonfunctional

Posted by tinerobison @tinerobison, Jul 5, 2023

My husband has been battling pancreatitis like pain for over 2 years his symptoms have progressively gotten worse . He has substernal upper stomach pain, diarrhea, severe nausea ,sweating ,blurred vision, confusion , indigestion, belching, flushing of skin but Hopkins found an Neuro endocrine tumor in the tail of his pancreas and they insists it’s a nonfunctional PNET and that it’s referred pancreatitis pain. I can tell you as his wife and as a nurse his pain is not normal . we go for lab work tomorrow to test for insulinoma or somastinoma but they are convinced that’s not the problem but they have no recommendations for his pain and symptoms. has anyone had a difficult time getting answers ?

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

vmchow | @vmchow | Jul 29, 2023

I'm sorry, i think i gave you a redundant reply to another post because i had not seen this one🙏

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tinerobison | @tinerobison | Jul 29, 2023
In reply to @mmerry "Thanks for your thoughts. I am in Canada. I am 56 with no symptoms. A Dototate..." + (show)
@mmerry

Thanks for your thoughts. I am in Canada. I am 56 with no symptoms. A Dototate 68 PET scan was done which showed uptake in the pancreas lesion. In Canada and Europe the protocol is that for any tumor less that 2 rms it is a survelliance approach. So at 1.7 cms I am in that boat. Scans every 6 months going forward. My understanding is that it’s purely a risk balance of touching the pancreas and creating issues versus the higher probability it will not grow or spread. I know I would feel more comfortable with a biopsy to know if it’s a fast grower is my thinking.

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The waiting part is what I find frustrating especially if you have symptoms. My husband feels terrible everyday with no resolution to help him feel better and then they say his symptoms are not from the tumor but have no answer to what his symptoms are coming from and then they say come back in a year. We’re going for a 2nd opinion! We’re hoping Mayo brings us some answers. Has anyone on here gone to Mayo or MD Anderson?

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1 reply
millds | @millds | Jul 30, 2023
In reply to @tinerobison "The waiting part is what I find frustrating especially if you have symptoms. My husband feels..." + (show)
@tinerobison

The waiting part is what I find frustrating especially if you have symptoms. My husband feels terrible everyday with no resolution to help him feel better and then they say his symptoms are not from the tumor but have no answer to what his symptoms are coming from and then they say come back in a year. We’re going for a 2nd opinion! We’re hoping Mayo brings us some answers. Has anyone on here gone to Mayo or MD Anderson?

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Yes, I have/am going to Mayo Clinic in Rochester. Dr. Halfdanarson is my specialist.
They are very knowledgeable and caring. Navigating the world of an uncommon cancer can be extremely frustrating. Second opinion at best in the world can’t hurt! Hoping you find answers and support! 🙏🏻

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1 reply
millds | @millds | Jul 31, 2023

helpful resources:

Lacnets.org
Ronnyallan.net
Netsrf.org

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tinerobison | @tinerobison | Jul 31, 2023
In reply to @millds "Yes, I have/am going to Mayo Clinic in Rochester. Dr. Halfdanarson is my specialist. They are..." + (show)
@millds

Yes, I have/am going to Mayo Clinic in Rochester. Dr. Halfdanarson is my specialist.
They are very knowledgeable and caring. Navigating the world of an uncommon cancer can be extremely frustrating. Second opinion at best in the world can’t hurt! Hoping you find answers and support! 🙏🏻

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Did you request Dr. Halfdanarson? We have been watching his videos!

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1 reply
millds | @millds | Jul 31, 2023
In reply to @tinerobison "Did you request Dr. Halfdanarson? We have been watching his videos!" + (show)
@tinerobison

Did you request Dr. Halfdanarson? We have been watching his videos!

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Yes, I did request him. It may take time to get an appt. So be prepared. He not inly teaches but is on several boards as well as travels to speak.
May I ask where you are located?

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1 reply
tinerobison | @tinerobison | Jul 31, 2023
In reply to @millds "Yes, I did request him. It may take time to get an appt. So be prepared...." + (show)
@millds

Yes, I did request him. It may take time to get an appt. So be prepared. He not inly teaches but is on several boards as well as travels to speak.
May I ask where you are located?

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We’re located in Pennsylvania but are able to travel to him.

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millds | @millds | Jul 31, 2023

University of chicago has a nets center and very good up and coming surgeon. A little closer.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Aug 1, 2023

To @tinerobison and the others in this discussion group who might be new to a NETs diagnosis:

There is an online Mayo Clinic NETs support group meeting on Thursday, August 3. Here is a link with information on how to register for this meeting.
https://connect.mayoclinic.org/comment/905162/
After registration, you will then be sent the Zoom link.

This month's meeting will be a Round Table discussion where other NETs patients will share their experiences and you can ask questions and share your NETs journey as well.

I would encourage all new (and of course, experienced NETs patients) to attend this meeting. You will learn a lot from others dealing with this rare cancer.

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tinerobison | @tinerobison | Aug 29, 2023

We have arrived at Mayo we’re praying we get a better plan!

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