Neuroendocrine Tumors (NETs) Support Group

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Comments (268)

Hi! I'm from Iowa. Have NETS in my lungs

https://connect.mayoclinic.org/comment/1169154/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2024

Hi @marciamiller I also have DIPNECH and lung NETS (cancer). I’m guessing you saw Dr. Ramirez....

https://connect.mayoclinic.org/comment/1162740/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

Hello @californiazebra, I really appreciate the chronology that you provided as you have been dealing with...

https://connect.mayoclinic.org/comment/1179350/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

It can sure be a frustrating journey to diagnosis, can’t it? Glad they figured yours out...

https://connect.mayoclinic.org/comment/1171342/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

Hi Teresa, I’m currently a patient at Mayo in Jacksonville. I have been treated this year...

https://connect.mayoclinic.org/comment/1170850/

Discussion: NET of the Rectum: Anyone at Mayo Jacksonville? What can I expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2024

Hi @breck Thank you for your response. Sorry this is so scary and you have breathing...

https://connect.mayoclinic.org/comment/1170238/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2024

Hi @breck You’ve been through a lot. Sorry to hear they did not get it all....

https://connect.mayoclinic.org/comment/1169807/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

Hello @aulynn and welcome to the NETs support group on Mayo Connect. I'm so glad that...

https://connect.mayoclinic.org/comment/1161114/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

Hi @donnapeck51 I’m sorry to hear about your Merkel cell carcinoma. I’m not a doctor but...

https://connect.mayoclinic.org/comment/1172492/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2024

@gprior Hi Gloria. Sorry you have a tumor by your heart and need more surgery. No,...

https://connect.mayoclinic.org/comment/1142729/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

@mcbyron How was your experience with Dr. Liu? I’m impressed by him after watching many presentations....

https://connect.mayoclinic.org/comment/1142067/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2024

I think you hit the nail on the head with the workaround. That being said, I...

https://connect.mayoclinic.org/comment/1126890/

Discussion: Lanreotide eventually becomes less effective, why?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2024

I’ve been taking octreotide injections for over 3 years for lung NETs. Cause fatigue especially the...

https://connect.mayoclinic.org/comment/1098642/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2024

I will be having robotic surgery on July 11 to have the NETs cancer removed from...

https://connect.mayoclinic.org/comment/1079515/

Discussion: Altitude change after lung biopsy/bronchoscopy

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2024

Lately, I have started coughing out of the blue for no reason. Has anyone else with...

https://connect.mayoclinic.org/comment/1066295/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 11, 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

Thank you,,,, l called Dana Farber, Boston for second opinion. Will see May 10th. I do...

https://connect.mayoclinic.org/comment/1056725/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

Sorry l have been sick, Yes it was the scan we all were talking about! The...

https://connect.mayoclinic.org/comment/1033757/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2024

Hello @gig666 and welcome to the NETs support group on Mayo Connect. I am glad that...

https://connect.mayoclinic.org/comment/1022080/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

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

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