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146 total results

Comments (141)

Hi @pattirushing It's a little bit hard for me to single out all the octreotide side...

https://connect.mayoclinic.org/comment/838730/

had life altering symptoms from NETs/DIPNECH

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

@auntieoakley I'm sort of hit and miss with the electronic world. Like you, sometimes I'm slow...

https://connect.mayoclinic.org/comment/862194/

breast cancer and unrelated lung NETS/DIPNECH

Discussion: Lymphovascular Invasion Present

Support Group: Breast Cancer

Posted: May 18, 2023

It was very helpful and encouraging to read your comments . I have not met or...

https://connect.mayoclinic.org/comment/845625/

I was diagnosed with Dipnech andNuroendocrine

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2023

@gmapam Your NETs oncology team should be able to tell you. You need to have somatostatin...

https://connect.mayoclinic.org/comment/912394/

to help with symptoms at least for DIPNECH

Discussion: How do I know somatostatin is in my system?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2023

@albertklein Did your doctor say why? Do you have any respiratory issues? I would be concerned....

https://connect.mayoclinic.org/comment/913487/

I also have the very rare DIPNECH which

Discussion: Lung nodules highlighted in pet scan, my doctor says to wait to biopsy

Support Group: Just Want to Talk

Posted: Aug 15, 2023

Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical...

https://connect.mayoclinic.org/comment/835869/

have typical lung NETs along with DIPNECH

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

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

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

tiny nodules lining the airways in DIPNECH

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10 12:55pm

Hi @helloitsme, your reaction to finding out you have NETs is normal. Even though NETs is...

https://connect.mayoclinic.org/comment/851198/

I take octreotide for my lung NETs/DIPNECH

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

@windyshores I wonder if my oncology team kept seeing me after 5 years because I have...

https://connect.mayoclinic.org/comment/868967/

over 50 lung tumors from Lung NETS/DIPNECH

Discussion: Changing Doctors for Followup: Who do I see?

Support Group: Breast Cancer

Posted: May 29, 2023

@scolio Thanks for the response and link. Interesting. I do have several CYP450 enzymes that are...

https://connect.mayoclinic.org/comment/863519/

finally diagnosed with lung NETS (rare)/DIPNECH

Discussion: Smell of rubbing alcohol brings on symptoms

Support Group: Healthy Living

Posted: May 20, 2023

Hi @anjalima - I'm not sure about bone pain and Kisqali. I started taking Kisqali and...

https://connect.mayoclinic.org/comment/883810/

Lung NETS (neuroendocrine cancer)/DIPNECH

Discussion: Mammograms and Ultrasounds During Treatment

Support Group: Breast Cancer

Posted: Jun 23, 2023

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

https://connect.mayoclinic.org/comment/945546/

neuroendocrine-cells-in-breast-and-lungs-dipnech

Discussion: Type 1 Neuroendocrine Tumor with no risk: What should I ask doctor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 10, 2023

Thank you for responding. Yes, you do have a lot going on, definitely more than just...

https://connect.mayoclinic.org/comment/834751/

going on, definitely more than just DIPNECH

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2023

Hi mcohan, I recommend LACNETS.org for tons of info on NETS. It's a support organization, not...

https://connect.mayoclinic.org/comment/844935/

an ever rarer lung condition called DIPNECH

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

Hi @kristin3, I have over 50 typical carcinoid tumors/DIPNECH across both lungs. Because I have so...

https://connect.mayoclinic.org/comment/849316/

have over 50 typical carcinoid tumors/DIPNECH

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Apr 25, 2023

Hi Mike @mikecincy Sorry to hear you've joined the NETs club. It looks like you're doing...

https://connect.mayoclinic.org/comment/885633/

I have lung NETs/DIPNECH and the 50+

Discussion: NET found by colonoscopy. What to expect and how should I approach

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

Hi @pb32680pbnew I had stage 1 BC 10 years ago, BRCA2+ so mastectomies and nothing else....

https://connect.mayoclinic.org/comment/883816/

tumors in my lungs due to lung NETS/DIPNECH

Discussion: Mammograms and Ultrasounds During Treatment

Support Group: Breast Cancer

Posted: Jun 23, 2023

Hi @pattirushing, octreotide and microwave ablation are the only two treatments I've had for my typical...

https://connect.mayoclinic.org/comment/845209/

#39;ve had for my typical carcinoids/DIPNECH

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

@silentfaith -- It sounds like your family has been hit hard with cancer just like mine...

https://connect.mayoclinic.org/comment/875485/

, Lung NETS (rare 1 in 20,000) and DIPNECH

Discussion: Anyone else have CHEK2 gene mutation? And have had multiple cancers?

Support Group: Cancer

Posted: Jun 9, 2023

I also have the same condition . I am 72 , diagnosed 8 years ago ....

https://connect.mayoclinic.org/comment/1142709/

tell me I can live a long life with Diptech

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16 11:10pm