Neuroendocrine Tumors (NETs) Support Group

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Being the "healthiest sick guy he knows!" is quite the compliment! Congratulations on living well, in...

https://connect.mayoclinic.org/comment/1084151/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2024

While I haven’t been diagnosed with DIPNECH I am 2 years into my treatment journey living...

https://connect.mayoclinic.org/comment/1070929/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Welcome, @canuk! As someone living with NETs for over 13 years, you will have a lot...

https://connect.mayoclinic.org/comment/1070890/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

I was 59 when I was diagnosed and 60 when I found I was at stage...

https://connect.mayoclinic.org/comment/1054505/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2024

Hi. I was very lucky. I didn’t have to have chemo or radiation. I just had...

https://connect.mayoclinic.org/comment/1046358/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2024

Hi Theresa Does Mayo in Jacksonville have the equipment I live on Long Island NY I...

https://connect.mayoclinic.org/comment/1023929/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 27, 2024

I wash my wig carefully using a little mild shampoo (Paula sells one too) in wash...

https://connect.mayoclinic.org/comment/1011193/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2024

What I did was to do a deep dive into the process. First I set my...

https://connect.mayoclinic.org/comment/1000033/

Discussion: Possible NET: Waiting for the endo appointment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2024

In May I had the entire lower left lobe removed for a 14mm Adenocarcinoma. I was...

https://connect.mayoclinic.org/comment/989273/

Discussion: Questions I should ask before surgery for Lung NETs?

Support Group: Lung Cancer

Posted: Dec 31, 2023

Diana, Thanks for your response. I’ve been just hanging waiting to get information about diagnosis and...

https://connect.mayoclinic.org/comment/975230/

Discussion: Anyone with carcinoid tumors in lung and stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 5, 2023

Hello!! Thank you for your kindness! Yes, I had surgery at the Mayo Clinic Jacksonville on...

https://connect.mayoclinic.org/comment/962471/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2023

thank you very much. I live in florida

https://connect.mayoclinic.org/comment/944904/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 9, 2023

Hello @bluebelle and welcome to the NETs support group at Mayo Connect. I wanted to respond...

https://connect.mayoclinic.org/comment/943270/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

Hi Meandmysis, Your sister is definitely going through a lot right now. My condolences on the...

https://connect.mayoclinic.org/comment/935216/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2023

You gave me hope, thank you. Every day I wake up I’m thankful. This is such...

https://connect.mayoclinic.org/comment/933232/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

What is the name and location of the endocrinologist? I live in Florida now and I...

https://connect.mayoclinic.org/comment/923277/

Discussion: Pituitary tumor symptoms: joint, muscle and body aches

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2023

So I spoke with my family doctor yesterday. He’s not a great doctor - very apathetic....

https://connect.mayoclinic.org/comment/914606/

Discussion: New paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 17, 2023

Yes, I'm also glad the surgeon you saw is so experienced with NET lung tumors. Experience...

https://connect.mayoclinic.org/comment/913585/

Discussion: How do I know somatostatin is in my system?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

The CT cu64 is a different PET scan. Chemo doesn't work on Pnet. Make sure you...

https://connect.mayoclinic.org/comment/905048/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2023

While I realize this is rather a late notice, I just received an email about an...

https://connect.mayoclinic.org/comment/902980/

Discussion: Learn About NETs and monthly meetings

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2023

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