Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

2,247 total results

Comments (2,056)

@mpt - I live in Syracuse. Dr.Mashaal Dhir is a hepatobilliary onco surgeon who did my...

https://connect.mayoclinic.org/comment/1322888/

Discussion: PNET in Tail of Pancreas, Portal and Splenic Veins

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8 10:26am

That’s great it improved your allergies! In my allergy testing, it looked like I was allergic...

https://connect.mayoclinic.org/comment/1330268/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18 11:53pm

I just found out I have a second and maybe third paraganglioma, carotid body tumor, this...

https://connect.mayoclinic.org/comment/1163726/

Discussion: Anyone have a paraganglioma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 27, 2024

I has dx’d with DIPNECH last fall after having my right middle lobe removed for 1...

https://connect.mayoclinic.org/comment/1143500/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

@rogo, I believe you are referring to lung carcinoid tumors with Diffuse Idiopathic Pulmonary NeuroEndocrine Cell...

https://connect.mayoclinic.org/comment/1070380/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 18, 2024

Hi. In December 2019 I had a biopsy that showed I had a 2cm non-functioning malignant...

https://connect.mayoclinic.org/comment/1067425/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2024

Well, Gigg66 it sounds like you and your doctors do have a plan. I'm glad to...

https://connect.mayoclinic.org/comment/1062304/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2024

Thank you @tomrennie ! I think looking and acting positively is the best we can do!...

https://connect.mayoclinic.org/comment/1040350/

Discussion: Meet @pavalina60

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 26, 2024

Yes l have Nerocarcinoid, cancer! NETS. My breathing is labored, but l am going to do...

https://connect.mayoclinic.org/comment/1033764/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2024

Great point. My drainage was unusual - my doc thinks the resident took out a stitch...

https://connect.mayoclinic.org/comment/990297/

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

Support Group: Lung Cancer

Posted: Jan 2, 2024

The Whipple procedure involves the resection of the head of the pancreas. This section is where...

https://connect.mayoclinic.org/comment/985469/

Discussion: Weight Loss after Whipple: What strategies helped you?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 23, 2023

My doctors would not listen to me at all! Just kept saying they don't know why...

https://connect.mayoclinic.org/comment/979673/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 13, 2023

Well I’m going to Mayo on the 11th for my 6 month gallium scan. I’ve been...

https://connect.mayoclinic.org/comment/940462/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

Thank you so much for the detailed response. I don’t think I would be able to...

https://connect.mayoclinic.org/comment/933174/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

Hi @bellom, welcome. I moved your post to this existing discussion: - Just diagnosed with pancreatic...

https://connect.mayoclinic.org/comment/922124/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 31, 2023

We are strong! She has gone from stage 4 mass on pancreas and too numerous tumors...

https://connect.mayoclinic.org/comment/889675/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2023

Nice. Sounds like you still kind of lived there? Haha. That is awesome. We missed family...

https://connect.mayoclinic.org/comment/882025/

Discussion: My Sister and Best Friend

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

It technically is two chemo pills; capecitabine and temozolomide. You will take more than two of...

https://connect.mayoclinic.org/comment/881550/

Discussion: My Sister and Best Friend

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

Not experiencing any sores. Try to manage worrying. I read where many patients live for many...

https://connect.mayoclinic.org/comment/869518/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 30, 2023

Oh it is so frustrating, isn't it? Someone told me that I should feel very comfortable...

https://connect.mayoclinic.org/comment/854520/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Melanoma & Skin Cancer

561

4 minutes ago

Breast Cancer

7145

1 hour ago

Cancer: Managing Symptoms

4914

1 hour ago

Pancreatic Cancer

3108

2 hours ago

Liver Diseases

462

2 hours ago