Neuroendocrine Tumors (NETs) Support Group

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Comments (2,052)

Patrick, were your tumors NET’s? Who is your oncologist at Barnes? I was diagnosed with a...

https://connect.mayoclinic.org/comment/1031029/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2024

We live in Greece where there are no NET specialists unfortunately. Oncologists give treatment according to...

https://connect.mayoclinic.org/comment/1025604/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2024

I was diagnosed with atypical carcinoid of the lung that had metastasized to my lymph nodes....

https://connect.mayoclinic.org/comment/1025524/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2024

We live in Charleston, SC and he goes to a Roper Oncologist who specializes in NETS...

https://connect.mayoclinic.org/comment/998850/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2024

I literally couldn’t change the big thick pad I had to tape onto the wound where...

https://connect.mayoclinic.org/comment/990558/

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

Support Group: Lung Cancer

Posted: Jan 2, 2024

Good tips, @kgrear. One often has to be persistent. You sound like you know the importance...

https://connect.mayoclinic.org/comment/988632/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2023

Hello @terrycooper and welcome to the NETs support group on Mayo Connect. It looks like the...

https://connect.mayoclinic.org/comment/973219/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 1, 2023

@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but...

https://connect.mayoclinic.org/comment/943323/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

NET is a very rare cancer still and many experienced oncologists still have dealt with very...

https://connect.mayoclinic.org/comment/935280/

Discussion: Follow up surgery for PNET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2023

I have been going through the same thing! Symptoms but I get no answers. My doctors...

https://connect.mayoclinic.org/comment/934493/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2023

I can truly empathize as I have been living the same nightmare since last November. I...

https://connect.mayoclinic.org/comment/932111/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2023

That’s good news. Sounds like it was caught early. Like I said we all have different...

https://connect.mayoclinic.org/comment/913622/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

@briea You mentioned that you were thinking about another opinion. I would highly recommend that. You...

https://connect.mayoclinic.org/comment/913563/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

My best advice is to have the surgery if your doctor recommends it. Don't be afraid...

https://connect.mayoclinic.org/comment/902822/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2023

Aww thank uuu!! I'm going to try and keep smiling thru this and fighting for ALL...

https://connect.mayoclinic.org/comment/901285/

Discussion: Finally got my NETSPOT Scan approved by my medical insurance

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

@ronjake, I’ve been on injections of Octreotide for 5+ years and only had a lump twice...

https://connect.mayoclinic.org/comment/898742/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

I go to KU Med, and they have always scheduled my PET scans for the day...

https://connect.mayoclinic.org/comment/896642/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

Ask your doctors about adding Temozolimide to your regimen. It is an oral chemotherapy that is...

https://connect.mayoclinic.org/comment/885907/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2023

I am feeling pretty well thank you. Came back from a 3 mile hike with my...

https://connect.mayoclinic.org/comment/881898/

Discussion: My Sister and Best Friend

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

I’m well. Thank you for checking. I just had a scan in Rochester that they said...

https://connect.mayoclinic.org/comment/879762/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2023

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