1. < Neuroendocrine Tumors (NETs)
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Diagnosed with DIPNECH yesterday!

Posted by hope2bwell @hope2bwell, Jan 9, 2025

After many years of misdiagnosis, I've definitively been diagnosed with DIPNECH and will be having a neuroendocrine tumor, lymph nodes, and half of the LUL lobe removed in a few weeks. I am currently being treated by a pulmonologist and a surgeon. I do not have an oncologist yet. I am in Salt Lake City, Utah. Suggestions? I'm grateful to have found this site.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

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lisaonthegoco | @lisaonthegoco | 1 day ago
In reply to @californiazebra "Yes, please get a second opinion from a NETs multidisciplinary team familiar with DIPNECH before your..." + (show)
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Yes, please get a second opinion from a NETs multidisciplinary team familiar with DIPNECH before your surgery date. I have DIPNECH and lung NETs with 50+ tumors scattered across both lungs. I was misdiagnosed for 12 years after the nodules were first spotted because no one at my medical center system had ever heard of DIPNECH. The NETs team at a nearby teaching hospital was familiar with it. I had the largest tumor 2.6 cm destroyed with microwave ablation. They expect to do more ablations in the future as tumors grow (slowly) but not remove lobes since I have so many tumors and need to preserve lung tissue. I also have been taking octreotide injections every 28 days for 4 years that have been life changing by stopping my 30 year chronic cough, mucus and improved shortness of breath. I have no doubt my treatment plan would have been much different without an experienced NETs team. Experience matters! Don’t be a guinea pig for someone unfamiliar. DIPNECH is very rare.

My NETs team an hour away coordinates with my local oncologist so I have my injections and labs done right by my home and don’t have to commute. I now meet with my NETs team using virtual visits. So convenient. You’re going to live a long time so make sure you can breathe. My NETs was diagnosed with a needle biopsy thru my back and into my lung. If your tumors are as slow growing as mine, no rush on that surgery. Plenty of time for a second opinion.

Do you have respiratory symptoms? How many tumors? Both lungs? How big is the largest tumor?

The good news is based on symptoms I’ve had DIPNECH at least 35 years. Mine is considered advanced DIPNECH yet still stage I lung NETs. They will ablate any tumors that get too large (probably 2 cm) or behave differently from the others as those are the ones most likely to metastasize. Most of my tumors are about 1 cm, some a little more. Good luck.

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@californiazebra thank yo! Denver,CO here and have known about my nodules since I was 40. I will be 70 next month.
Wracking cough, not a single inhaler has helped. Told I have too many to treat, have had 2 broncoscopies and we just watch them grow year by year by CT scan. Told one is impinging on my left lobe as it slowly grows. I asked about treatment and was told surgery “when it is time”.
Going to look for a new pulmonologist since reading your post. I cough like crazy after eating, walking upstairs and in cold air.

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Teresa, Volunteer Mentor | @hopeful33250 | 1 day ago
In reply to @lisaonthegoco "@californiazebra thank yo! Denver,CO here and have known about my nodules since I was 40. I..." + (show)
Profile picture for lisaonthegoco @lisaonthegoco

@californiazebra thank yo! Denver,CO here and have known about my nodules since I was 40. I will be 70 next month.
Wracking cough, not a single inhaler has helped. Told I have too many to treat, have had 2 broncoscopies and we just watch them grow year by year by CT scan. Told one is impinging on my left lobe as it slowly grows. I asked about treatment and was told surgery “when it is time”.
Going to look for a new pulmonologist since reading your post. I cough like crazy after eating, walking upstairs and in cold air.

Jump to this post

Hello @lisaonthegoco

I am glad to hear that @californiazebra's post was helpful to you. Obtaining a second opinion is a wise decision when you are unsure whether your current treatment is helping you.

I look forward to hearing from you again. Will you continue to post with questions, concerns, and updates?

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Zebra | @californiazebra | 1 day ago
In reply to @lisaonthegoco "@californiazebra thank yo! Denver,CO here and have known about my nodules since I was 40. I..." + (show)
Profile picture for lisaonthegoco @lisaonthegoco

@californiazebra thank yo! Denver,CO here and have known about my nodules since I was 40. I will be 70 next month.
Wracking cough, not a single inhaler has helped. Told I have too many to treat, have had 2 broncoscopies and we just watch them grow year by year by CT scan. Told one is impinging on my left lobe as it slowly grows. I asked about treatment and was told surgery “when it is time”.
Going to look for a new pulmonologist since reading your post. I cough like crazy after eating, walking upstairs and in cold air.

Jump to this post

@lisaonthegoco
I'm so sorry that you've had to deal with this for so long and told there is no help. Have you been told you have DIPNECH or typical carcinoids? It sure sounds like it. If so, octreotide could knock out that cough and slow down nodule growth. You don't want surgery with DIPNECH because there are too many nodules and you have to preserve lung tissue. Surgery is for people who have a tumor(s) in one lobe. Inhalers do not work on my DIPNECH either. In fact, most of them irritated my lungs and made me cough more.

Denver? You are in luck! You just happen to live near a neuroendocrine cancer expert that I would absolutely see if I lived in Denver. I've watched so many of his YouTube videos. His name is Dr. Eric Liu at the Rocky Mountain Cancer Center there. He's a neuroendocrine surgeon. People around the country use him for second opinions. I'm not sure how hard it is to get a consult with him. He could steer you to the right person.

Two Key Neuroendocrine Centers in Denver
--UCHealth Neuroendocrine Tumor Center (Aurora/Denver): An NCI-designated Comprehensive Cancer Center, providing a dedicated multidisciplinary team (MDC) including endocrine surgery (Dr. Robert McIntyre Jr.) and endocrinology (Dr. Nikita Pozdeyev). They specialize in complex, personalized treatment plans and advanced imaging.
--The Neuroendocrine Institute at Rocky Mountain Cancer Centers (Denver): Led by Dr. Eric H. Liu, this team specializes in all types of NETs, including lung, bowel, pancreas, and adrenal. They are a specialized center with locations that focus on personalized treatment strategies and molecular imaging.

You don't want to go to just any pulmonologist because DIPNECH is too rare and most have never heard of it. You need someone with experience. Try to get a consult at one of the neuroendocrine centers and have that specialist refer you to the right pulmonologist or medical oncologist. I've been treated by a UCLA neuroendocrine team thoracic oncologist (he orders my octreotide) and an interventional radiologist for 5 years and just added a pulmonologist at UCLA to the team because my local pulmonologist doesn't know much about DIPNECH and really wasn't interested. My UCLA pulmonologist has 6 other DIPNECH patients, but is also the director of the lung nodule clinic there. Perfect! I had an amazing conversation with him yesterday. You need neuroendocrine experts. I asked the director of thoracic surgery at my local hospital if he had ever heard of DIPNECH and he hadn't. That's why you need a neuroendocrine team. Lung NETs and DIPNECH are treated differently than other lung issues/cancers. I hope your Medicare plan includes these providers. Feel free to send me a private message if you have more questions. Best of luck with the right expert! Octreotide could change your life!!! It changed mine!

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azrosegold | @azrosegold | 1 day ago

First off, it will be OK! I was diagnosed a few months ago. Had a wedge resection of my LLL done end of September. I’m lucky to live near Mayo Phoenix. Best advice is to see a Dr who is familiar with DIPNECH. I’m being followed by a pulmonologist not an oncologist. I have zero symptoms at this point. Plan of action is to have chest CT scans every 3 months to watch for growth in all the other tumors. Then decide how to proceed.

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lindabees | @lindabees | 15 hours ago

I know its hard to hear that diagnosis but glad you finally have an answer.
Here's a link to the specific doctors at Huntsman that specialize in nets, plus one other specialist in Murray
https://netrf.org/for-patients/neuroendocrine-tumor-doctor-database/

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