Neuroendocrine Tumors (NETs) Support Group

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Hello sorry to hear about your diagnosis but glad you found this forum. I was diagnosed...

https://connect.mayoclinic.org/comment/851412/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

My husband was diagnosed with stage 3B merkel cell on his nose .....they removed it in...

https://connect.mayoclinic.org/comment/1082712/

Discussion: Merkel Cell Carcinoma: I'd like to hear from others

Support Group: Melanoma & Skin Cancer

Posted: Jun 7, 2024

@annie12345 That’s hard when cost becomes the driver. Yes, I’m lucky I’ve always had great insurance...

https://connect.mayoclinic.org/comment/1330889/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

@rww1979, Joe Tippens protocol appears again and again in forums and social media. It is important...

https://connect.mayoclinic.org/comment/1295985/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2025

I have lung NETs while headaches can be a symptom for me I believe my headaches...

https://connect.mayoclinic.org/comment/790348/

Discussion: Neuroendocrine tumor in small bowel with lymph nodes involved

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2022

Hello @gapsc and welcome to Mayo Connect I am Teresa, a volunteer mentor with Connect and...

https://connect.mayoclinic.org/comment/134268/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2018

Last week was diagnosed with Neuro endocrine tumor "nodules.". It is referred as! Biopsy of carcinoid,...

https://connect.mayoclinic.org/comment/1021964/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2024

HI @lupitaromero Hope all is well with peace in your life. I was diagnosed with large...

https://connect.mayoclinic.org/comment/854646/

Discussion: Alguien ha tenido metastasis en ganglios? Metastases in lymph nodes

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Hi @pammy229 I’m glad you decided to go to Mayo and will undoubtedly be hooked up...

https://connect.mayoclinic.org/comment/1198299/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hi @mir123 Thanks for sharing your info. I understand there is little historical info to go...

https://connect.mayoclinic.org/comment/909352/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2023

all I had was a CT of lungs which showed no new tumors. Doctor said we...

https://connect.mayoclinic.org/comment/1542748/

Discussion: Possible new tumor: If NETs is back, can I go to Mayo Clinic?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4 1:50pm

@jhhaas I'm just wondering, if you have multiple nets throughout your lungs, why your doctor did...

https://connect.mayoclinic.org/comment/1539501/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 10:14am

I was looking for posts here on DVT's. My post is about advocating for ourselves. I...

https://connect.mayoclinic.org/comment/1538852/

Discussion: Blood Clots, DVT and Neuroendocrine Cancer - Be aware.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30 1:15pm

@jhhaas The cancer doctor who did my surgery, recommended I have surgery after doing a biopsy...

https://connect.mayoclinic.org/comment/1541220/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 12:22pm

Can the CgA be over 94 and not be a problem. I am at 97 and...

https://connect.mayoclinic.org/comment/1542756/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4 1:58pm

This is important to know. I wasn't told of the risk, and one evening I started...

https://connect.mayoclinic.org/comment/1551134/

Discussion: Blood Clots, DVT and Neuroendocrine Cancer - Be aware.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15 10:41am

@azrosegold Lucky you have no symptoms. In the 12 years it took doctors to finally diagnose...

https://connect.mayoclinic.org/comment/1556879/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

Hi @grec I shared my details earlier in the thread if you want to scroll back....

https://connect.mayoclinic.org/comment/1048486/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

Thank you for the kind words and advice. I can certainly set up a group chat...

https://connect.mayoclinic.org/comment/756081/

Discussion: Need help with diet after a hemicolectomy....

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2022

@jessie1990 I asked the surgeon way before surgery what the usual time in the hospital looked...

https://connect.mayoclinic.org/comment/1436822/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2025

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