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Comments (241)

Hi @queengemini16 What is your surgeon’s and oncologist’s recommended course of action? Are you planning to...

https://connect.mayoclinic.org/comment/1006882/

than what you’ve read here in the DIPNECH

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 30, 2024

I have GERD too. Before my DIPNECH and lung NETs was diagnosed even though we knew...

https://connect.mayoclinic.org/comment/1329913/

Before my DIPNECH and lung NETs was ... My pulmonologist has one other DIPNECH

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18 12:24pm

@diamonddog Do you have any respiratory symptoms from the granulomas? Are they slowly growing by any...

https://connect.mayoclinic.org/comment/1343061/

have a super rare condition called DIPNECH ... It’s called DIPNECH.

Discussion: Radiation/fibrosis ick, anything at ALL I can do to prevent/reduce it?

Support Group: Breast Cancer

Posted: Jul 7 12:15pm

Hi @californiazebra This tumor that was ablated was the only one that the dotatate pet ‘lit’...

https://connect.mayoclinic.org/comment/1071219/

I have many small tumors with the DIPNECH

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Tom, that’s frustrating about your incidental findings too. I hope both conditions were successfully treated. I...

https://connect.mayoclinic.org/comment/958681/

NETS & DIPNECH.

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2023

I had a large one in my left lower lobe. Almost 2cm and they weren't sure...

https://connect.mayoclinic.org/comment/1318419/

removed lobe showed carcinoid NETS and DIPNECH

Discussion: Diagnosis Difficulties

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2 8:50am

Typical carcinoids and DIPNECH are not associated with smoking. The majority of cases are non-smokers and...

https://connect.mayoclinic.org/comment/1288434/

Typical carcinoids and DIPNECH are not ... Luckily for us, typical carcinoids and DIPNECH

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23 5:59pm

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

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

As for DIPNECH, it is even rarer and ... I do not believe DIPNECH is Merkel cell

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2024

@mieczyslaw If you have a lot of tumorlets in both lungs it sounds suspect for DIPNECH....

https://connect.mayoclinic.org/comment/962492/

in both lungs it sounds suspect for DIPNECH

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2023

I coughed constantly for 30 years due to lung NETs and DIPNECH but octreotide injections for...

https://connect.mayoclinic.org/comment/1067737/

for 30 years due to lung NETs and DIPNECH

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2024

Hi, I'm 67 years old. Have been mis-diagnosed for over 5 years. 2023 Dr. finally walks...

https://connect.mayoclinic.org/comment/1054374/

in and tells me he believes I have DIPNECH ... Now unfortunately my Dr is not a DIPNECH

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

I have also been diagnosed with DIPNECH and have probably had for 20 years. I have...

https://connect.mayoclinic.org/comment/1172007/

I have also been diagnosed with DIPNECH

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

@jhhaas Glad the surgery is behind you. Yes, you should have a NETs multidisciplinary team at...

https://connect.mayoclinic.org/comment/976633/

and reduce any symptoms caused by DIPNECH

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

@meryls12, you may wish to consult with the leading NETs team at Mayo Clinic in Jacksonville...

https://connect.mayoclinic.org/comment/968224/

pulmonary neuroendocrine cell hyperplasia (DIPNECH

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2023

DIPNECH and lung NETs typically do have somatostatin receptors which is why I had the DOTATATE...

https://connect.mayoclinic.org/comment/1361481/

DIPNECH and lung NETs typically do have

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1 12:33pm

@mlbschuler Great news that you were happy with your visit with Dr. Ramirez and he is...

https://connect.mayoclinic.org/comment/1024996/

as I do so he can still treat your DIPNECH ... The DIPNECH community is very small

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 29, 2024

Hi @dipnech67 I would be happy to speak with you. I just sent you a private...

https://connect.mayoclinic.org/comment/1055386/

Hi @dipnech67 I would be happy to ... young, but no one else with NETs or DIPNECH ... DIPNECH may or may not progress to lung ... even as a child so maybe I've had DIPNECH ... Yes, there are probably a lot more DIPNECH

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

Thanks for the update. I do not have those mutations so we may have different types...

https://connect.mayoclinic.org/comment/1226513/

(typical carcinoids in addition to DIPNECH

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31 7:20pm

@jhhaas Good idea to get a second opinion. Glad you don’t have coughing. Octreotide also helps...

https://connect.mayoclinic.org/comment/1143685/

people can live a very long time with DIPNECH