1. < Neuroendocrine Tumors (NETs)

New PNET

Posted by mn2025 @mn2025, May 27 12:09pm

Presented to ER with shortness of breath, chest pain and severe pain to both legs. Incidentally found pancreatic Neuroendocrine tumor. Ct/MRI done and surgeon confirms tumor by just this test. Scheduled for whipple. Symptoms are not related to the tumor. Cardiac testing normal. Should I have more testing done? Surgeon says it needs to come out.

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

mn2025 | @mn2025 | May 28 11:41pm
In reply to @californiazebra "Did they do a biopsy? Is this surgeon parts of a NETs team? You definitely want..." + (show)
@californiazebra

Did they do a biopsy? Is this surgeon parts of a NETs team? You definitely want a NETs specialist with lots of experience treating NETs.

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No biopsy, surgeon is NET specialist. He said he doesn’t want it to Mets with biopsy.

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mn2025 | @mn2025 | May 28 11:42pm
In reply to @vinnie694 "Before surgery, I would definitely get the opinion of a NET specialist, especially since the tumor..." + (show)
@vinnie694

Before surgery, I would definitely get the opinion of a NET specialist, especially since the tumor isn’t causing your symptoms..

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The surgeon specializes in NETS.

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tstern7 | @tstern7 | May 29 1:26am

That’s okay. Stay positive and please keep me posted. We are starting a neuroendocrine group at Seena Magowitz. I have also volunteered in San Francisco for the Pancreatic Cancer Action Network. Both great organizations with patient resources. I find that Seena Magowitz is more patient centric. If you feel well enough after surgery I hope you’ll join us.

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lindabees | @lindabees | May 29 8:23am
In reply to @mn2025 "No. The doctor said ct/mri confirmed. No biopsy because he doesn’t want it to Mets. It..." + (show)
@mn2025

No. The doctor said ct/mri confirmed. No biopsy because he doesn’t want it to Mets. It just doesn’t make sense.

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Please seek out a net specialist before going forward. You very well may need surgery but more information is needed to determine the best course of action

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Mentor
Turkey, Volunteer Mentor | @tomrennie | May 29 9:22am
In reply to @mn2025 "No. The doctor said ct/mri confirmed. No biopsy because he doesn’t want it to Mets. It..." + (show)
@mn2025

No. The doctor said ct/mri confirmed. No biopsy because he doesn’t want it to Mets. It just doesn’t make sense.

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I agree that it just doesn't make sense. And if it doesn't make sense, why do it until it does? Diagnosing and treating NETs is a bit like building a puzzle. If you force the first few pieces together, the remaining pieces just won't fit right. To me, your doctor is forcing the first few pieces together that won't allow your puzzle to work. You deserve your puzzle to work. Get another opinion. Allow the folks on Mayo Connect to share our experiences and resources to help you put your best puzzle together. It's your life. You are your best advocate. Fight for what makes sense to you. Please let us help fight with you. It is a journey that is just too hard to fight alone. Most of us on here know. We are all on our journeys ourselves, but we are doing them together. Does that make sense? If not, please let us know.

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fraaseo | @fraaseo | May 29 11:12am
In reply to @mn2025 "No. The doctor said ct/mri confirmed. No biopsy because he doesn’t want it to Mets. It..." + (show)
@mn2025

No. The doctor said ct/mri confirmed. No biopsy because he doesn’t want it to Mets. It just doesn’t make sense.

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I agree with what the Dr says about metastasis; once they do surgery it’s almost an “automatic” it will spread (no disrespect to surgeons, can you imagine trying to remove all the microscopic cancer cells?) Good luck to you!

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kim1965 | @kim1965 | May 29 1:59pm
In reply to @mn2025 "The only recommendation is the whipple. He said we won’t know what type until biopsy after..." + (show)
@mn2025

The only recommendation is the whipple. He said we won’t know what type until biopsy after surgery.

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I will only confirm what others have said already. Get a Net Specialist or even better as part of a Multi-discipline Team to be your team in this fight against NET. Our original oncologist with 40 years of experience had only had 2 cases of NET, in his career. He immediately referred my wife to a team including a Net Specialist, that more than likely saved her life. You one chance to make this decision right, get the best, and this group will share our own experience hopefully helping you along the way. We got you and you got this!🙏🏻

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