1. < Neuroendocrine Tumors (NETs)

Should I see a NET specialist?

Posted by Liz @lizzyeastwood, May 17, 2023

In January 2020 I had a distal pancreaectomy to remove a malignant non functioning pancreatic tumor. It was well defined; local lymph nodes clear; ki 67 >2. Every 6 months I receive a pt scan which I discus with my surgeon’s PA. Should I also be consulting with a Net specialist?

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

Moderator
Colleen Young, Connect Director | @colleenyoung | May 28, 2023
In reply to @lizzyeastwood "Thank you very much for your reply. It has made me anxious that Mayo hasn’t suggested..." + (show)
@lizzyeastwood

Thank you very much for your reply. It has made me anxious that Mayo hasn’t suggested a Net specialist. I will definitely check out LACNETS. Blessing and good luck to you!

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Hi Liz, I thought I'd check in with you. Has it been determined that the tumor was a neuroendocrine tumor? How are you doing?

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1 reply
Liz | @lizzyeastwood | Jun 16, 2023
In reply to @tomrennie "Have you been diagnosed with a NET by Mayo?" + (show)
@tomrennie

Have you been diagnosed with a NET by Mayo?

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Yes, Pnet neuroendocrine ki 67 > 2 malignant non functioning was the diagnosis after biopsy in Rochester. The tumor was originally a found during a ct scan at another hospital after a routine colonoscopy revealed a large tumor in my sigmoid colon ( which was not a NET.) I had the colon tumor removed and a distal pancreaectomy at Mayo in January of 2020

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Liz | @lizzyeastwood | Jun 16, 2023
In reply to @colleenyoung "Hi Liz, I thought I'd check in with you. Has it been determined that the tumor..." + (show)
@colleenyoung

Hi Liz, I thought I'd check in with you. Has it been determined that the tumor was a neuroendocrine tumor? How are you doing?

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I’m well. Thank you for checking. I just had a scan in Rochester that they said looked “great”. When I read the other posts I get concerned that I’m not doing enough for myself, but I think that is a pretty universal concern with cancer. Not completely related but my husband died of melanoma when my children were young, so I’ve been determined to seek the best care I could find. Mayo has literally been a lifesaver.

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1 reply
Turkey | @tomrennie | Jun 16, 2023
In reply to @lizzyeastwood "I’m well. Thank you for checking. I just had a scan in Rochester that they said..." + (show)
@lizzyeastwood

I’m well. Thank you for checking. I just had a scan in Rochester that they said looked “great”. When I read the other posts I get concerned that I’m not doing enough for myself, but I think that is a pretty universal concern with cancer. Not completely related but my husband died of melanoma when my children were young, so I’ve been determined to seek the best care I could find. Mayo has literally been a lifesaver.

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I go to Mayo Phoenix/Scottsdale. They have been a lifesaver for me too.

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Fabian Trujillo | @fabiant | Jun 17, 2023
In reply to @lizzyeastwood "Thank you very much for your reply. It has made me anxious that Mayo hasn’t suggested..." + (show)
@lizzyeastwood

Thank you very much for your reply. It has made me anxious that Mayo hasn’t suggested a Net specialist. I will definitely check out LACNETS. Blessing and good luck to you!

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I also have a PNET and am being seen at the Mayo Clinic in Scottsdale/Phoenix. They have a very good NET program. Dr Sonbol is my doctor and my surgeon is Dr. Stucky who specializes in PNETs also. They are part of a multi-disciplanary team to diagnoses and treats PNETs. Good luck.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 18, 2023
In reply to @fabiant "I also have a PNET and am being seen at the Mayo Clinic in Scottsdale/Phoenix. They..." + (show)
@fabiant

I also have a PNET and am being seen at the Mayo Clinic in Scottsdale/Phoenix. They have a very good NET program. Dr Sonbol is my doctor and my surgeon is Dr. Stucky who specializes in PNETs also. They are part of a multi-disciplanary team to diagnoses and treats PNETs. Good luck.

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Hello @fabiant,

I am glad to hear that you are being seen by NET specialists at Mayo. What is the current plan of treatment for your PNET?

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1 reply
Turkey | @tomrennie | Jun 18, 2023
In reply to @fabiant "I also have a PNET and am being seen at the Mayo Clinic in Scottsdale/Phoenix. They..." + (show)
@fabiant

I also have a PNET and am being seen at the Mayo Clinic in Scottsdale/Phoenix. They have a very good NET program. Dr Sonbol is my doctor and my surgeon is Dr. Stucky who specializes in PNETs also. They are part of a multi-disciplanary team to diagnoses and treats PNETs. Good luck.

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Dr. Sonbol is my doctor as well.

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Liz | @lizzyeastwood | Jun 18, 2023
In reply to @tomrennie "So we want a NET specialist on our care team even if we don't have NETs?..." + (show)
@tomrennie

So we want a NET specialist on our care team even if we don't have NETs? As a Mayo patient, I am all confused.

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Hi. I guess my original post was confusing. I had a PNet resected and now I am on six months scans and blood work. Because it was resected I didn’t know if I should be seeing a Net specialist, or have a Net specialist on my team. Thanks

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2 replies
Fabian Trujillo | @fabiant | Jun 18, 2023
In reply to @hopeful33250 "Hello @fabiant, I am glad to hear that you are being seen by NET specialists at..." + (show)
@hopeful33250

Hello @fabiant,

I am glad to hear that you are being seen by NET specialists at Mayo. What is the current plan of treatment for your PNET?

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Hello

I'm on a watch and observe plan. I will have my next scans in six months or approximately in October or November.

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Fabian Trujillo | @fabiant | Jun 18, 2023
In reply to @lizzyeastwood "Hi. I guess my original post was confusing. I had a PNet resected and now I..." + (show)
@lizzyeastwood

Hi. I guess my original post was confusing. I had a PNet resected and now I am on six months scans and blood work. Because it was resected I didn’t know if I should be seeing a Net specialist, or have a Net specialist on my team. Thanks

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I think that is your call. However, I would see a NET specialist just to be cautious.

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