Neuroendocrine Tumors (NETs) Support Group

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Comments (298)

Hello @matt2024 and welcome to the NETs support group on Mayo Connect. I appreciate you sharing...

https://connect.mayoclinic.org/comment/1081450/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2024

Hello @ddepatie and welcome to the NETs support group on Mayo Connect. Since you posted in...

https://connect.mayoclinic.org/comment/1045941/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2024

@tomrennie Thank you for sharing. What stage Pnets to tbe liver or grade did you have?...

https://connect.mayoclinic.org/comment/1251236/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5 4:43pm

I have a very similar situation. ( you can look at my posts). But, in short...

https://connect.mayoclinic.org/comment/1294154/

Discussion: Lanreotide side effects: diarrhea constipation, what to do?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1 10:01am

Thank you for posting all this information. I know we will have to see the Dr....

https://connect.mayoclinic.org/comment/1224998/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29 7:55pm

Thank you for the kind words! It has been exactly like how you described. I never...

https://connect.mayoclinic.org/comment/1207978/

Discussion: Hello. I am new here. My husband was recently diagnosed with NETs.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10 12:11am

I did receive some advice from a nutritionist when I was first diagnosed with PNETs. I...

https://connect.mayoclinic.org/comment/1275331/

Discussion: NETS and Nutrition

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6 7:50am

Unfortunately the PNET’s usually come back at about 10 years, I was told. Mine are back...

https://connect.mayoclinic.org/comment/1337825/

Discussion: PNET removed 2 years ago: Can it come back at another site?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 29 1:07pm

Thank you. My net specialists are oncologist surgeons at Stanford. And they said I don’t need...

https://connect.mayoclinic.org/comment/1337983/

Discussion: PNET removed 2 years ago: Can it come back at another site?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 29 4:35pm

Hello @cottonpmhnp and welcome to Mayo Clinic Connect. I can certainly understand your confusion and concern...

https://connect.mayoclinic.org/comment/823643/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

Hi, Pavlina, No, nothing. After my surgery was over, I saw a specialist in PNETs in...

https://connect.mayoclinic.org/comment/1083505/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 9, 2024

The specialist I saw at Iowa, Dr Dillon, is in the same clinic as the Drs....

https://connect.mayoclinic.org/comment/137538/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2017

We just met up with the oncologist. Actually the same Dr. that had treated a family...

https://connect.mayoclinic.org/comment/1219187/

Discussion: PNETs: What comes first? Surgery or try to shrink tumor with chemo?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22 4:46pm

I had y-90 treatment on both sides of my liver. Mapping was done and couple weeks...

https://connect.mayoclinic.org/comment/1174717/

Discussion: Radioembolization Is My Next Step

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2024

Just here to share my story and hopefully help others. I was diagnosed at 57 with...

https://connect.mayoclinic.org/comment/1312320/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25 8:12am

I've been on the same journey. Diagnosed March 2024 with PNETS.... Grade 2, Stage 4 metastasis...

https://connect.mayoclinic.org/comment/1333049/

Discussion: First scan after 3 months of lanreotidec

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 22 9:26pm

I'm sorry you have to go through this. My husband was on Everolimus for 3 years...

https://connect.mayoclinic.org/comment/1333991/

Discussion: Everolimus/ Afinitor experience/side effects

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24 8:29am

Anyone start this treatment? With good results? My husband has PNETS G3 KI67% 25%. There is...

https://connect.mayoclinic.org/comment/1341808/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5 3:52pm

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