Neuroendocrine Tumors (NETs) Support Group

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Hello @jocat74, It is always wise to consult with a NET specialist. Mayo Clinic has NET...

https://connect.mayoclinic.org/comment/1242526/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21 5:36pm

I have DIPNECH, also had my right middle lobe removed in October 2023. At this point,...

https://connect.mayoclinic.org/comment/1244351/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24 8:29am

I actually expected them to surprise you with a surgery date sooner than 4-5 wks away....

https://connect.mayoclinic.org/comment/1263585/

Discussion: Was it difficult to determine if your paraganglioma was active?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21 2:27pm

Hello @latricebj and welcome to Mayo Connect. Here is some information on all of the functions...

https://connect.mayoclinic.org/comment/1203918/

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4 4:33pm

I took immunotherapy I was diagnosed in June of 23 with Merkel cell carcinoma it was...

https://connect.mayoclinic.org/comment/1172429/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2024

To jls77 It sounds like you're wanting to know about people's experiences w paragangliomas. In April...

https://connect.mayoclinic.org/comment/1164658/

Discussion: Anyone have a paraganglioma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2024

@laree my NET also started in the pancreas. The initial diagnosis is ground shaking. In fact,...

https://connect.mayoclinic.org/comment/1207345/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9 7:35am

I also have the same condition . I am 72 , diagnosed 8 years ago ....

https://connect.mayoclinic.org/comment/1142709/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

Haha! No worries at all. I get asked that a lot and love to share our...

https://connect.mayoclinic.org/comment/1123243/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2024

I thought I replied but if I didn’t here goes . I presented at stage 4...

https://connect.mayoclinic.org/comment/1102644/

Discussion: What is a normal range for Chromogranin A test? Mine was 99 in 2021.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2024

I had a 6 hour non-nerve sparing RARP ten days ago for my Gleason 4+4=8 PC....

https://connect.mayoclinic.org/comment/1100341/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Jul 6, 2024

I live in Southern Oregon, so not close to Mayo though grew up in S. Dak.,...

https://connect.mayoclinic.org/comment/1076692/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

Thank you Phyllisden, yes l saw my two doctors oncologists, and thorax thoracic surgeon. They said...

https://connect.mayoclinic.org/comment/1062199/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2024

Sorry your going through this. Thanks for your response. If you do not mind, I would...

https://connect.mayoclinic.org/comment/1055029/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

I am doing better thanks. I was sick for years before getting diagnosed. Covid didn't help....

https://connect.mayoclinic.org/comment/1040151/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2024

@mlbschuler I am so excited to hear you are seeing Robert Ramirez! He seems the most...

https://connect.mayoclinic.org/comment/1012065/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8, 2024

I've had 17 lanreotide injections. one every 3 weeks. i still have all my hair. i...

https://connect.mayoclinic.org/comment/1011155/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2024

I thought, What if my diagnosis is a 30 day expected shelf life. That appointment is...

https://connect.mayoclinic.org/comment/1000177/

Discussion: Possible NET: Waiting for the endo appointment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2024

Thanks for the suggestions. I prefer not having someone at night. I don’t think I would...

https://connect.mayoclinic.org/comment/989847/

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

Support Group: Lung Cancer

Posted: Jan 1, 2024

I totally know how he and you feel. At least you are there to confirm it....

https://connect.mayoclinic.org/comment/979851/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 13, 2023

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