New DIPNECH diagnosis, need advice on doctors

Hi @bcraft. I'm new to this site too and what brought me here was a search about DIPNECH. It's a rare disorder with only a couple hundred document cases so I was excited to find someone else who had it. They do believe it is underdiagnosed because doctors are unfamiliar. Even after discovering 50+ tumors in both my lungs in 2008, it went undiagnosed for 12 years. At least 20 specialists over the years were baffled. The point being, you don't want to see just any oncologist, you want one familiar with DIPNECH and neuroendocrine lung carcinoids. You need a multidisciplinary NETs team. Oncologists and thoracic surgeons in my highly populated area hadn't heard of it. You'll need a top center like Mayo or UCLA where I go. MD Anderson in Houston. Maybe Baylor in Dallas is what you saw. There are others. You also want them to have experience. If a newly formed team, did they recruit experienced specialists? You also need NETs speciality centers that have the proper imaging equipment for the DOTATATE PET/CT scan (Ga68, Cu64). Not just any PET scan machine will do. NETs/DIPNECH is not treated like regular smoking lung cancer. DIPNECH primarily hits non-smoking women in their 5th and 6th decade often with a 10-20 year history of coughing and SOB.

The good news about DIPNECH is it's slow growing and only turns into cancer about 20% of the time. Even if it turns into atypical carcinoids, it's still slow growing. The issue is, it usually involves multiple tumors and causes a lot of respiratory symptoms like chronic coughing and shortness of breath upon exertion. I was also always coughing up clear mucous all day long. Mine did turn into cancer -- typical carcinoids. But it hasn't spread outside the lung -- again very slow growing. I had a chronic cough for 30 years until I started taking Octreotide injections for this. I receive an injection every 4 weeks. It has side effects, but has changed my life by significantly reducing my symptoms. DIPNECH is often misdiagnosed as COPD or asthma. I was told asthma, but the inhalers weren't helping. They sometimes give cortisone for DIPNECH. No one wants to be on cortisone long term. I didn't have that. Try one med at a time. Octreotide is all I've needed. The only other treatment I had was destroying the largest carcinoid that was 2.5 cm. An interventional radiologist at UCLA performed microwave ablation to destroy it. He said if any other tumors hit 2 cm, we will do it again because those are the most likely to metastasize. Lung NETs doesn't always metastasize. Not only did the octreotide help my symptoms day to day, but now I'm also a lot less sensitive to scented products that always triggered coughing. It was so hard for me to be around people especially crowds for 30 years. I felt like I was allergic to people!

As for finding a specialist. Mayo clinic MN has a neuroendocrine oncologist who is familiar with DIPNECH, Thor Halfdanarson MD. The oncologist I see speak about lung NETs and DIPNECH most is Robert Ramirez DO at Vanderbilt University. The NETs community of professionals is a tight one since NETs is rare and under-researched. I'm wondering if you contact these two NETs/DIPNECH specialists, if they can identify the closest qualified NETs team for you. Maybe?? Most NETs is GI. Lung cases are only about 25% of NETs cases (only 2% of lung cancer cases) and they are treated differently than your common lung cancer so you want Lung NETs/DIPNECH specialists.

One last thing, because UCLA is an hour away from me, two hours in traffic, I don't like going up there when I have a medical center right next door. I see my local oncologist for breast cancer treatment and he coordinates with the UCLA NETs oncology team for treatment on that. My local oncologist orders the octreotide for me so I can have the injections at his office. Easy. I'm in and out in 15 min for that. I did have to go up to Los Angeles for the microwave ablation, the DOTATATE PET scan and my periodic CT scans (because they said their radiologists know what to look for). Other than that, I do video calls to talk to my lung NETs oncologist and my interventional radiologist up at UCLA (his PA said people come from all over the country to see him). It all works out very well and ensures I receive the appropriate and experienced treatment. Maybe you can have the nearest NETs specialty team coordinate with a local oncologist? Some people have lung carcinoids (NETs), no DIPNECH. Some have DIPNECH, no carcinoids (NETs). The minority, like me, have both. I haven't had any part of my lung removed so if anyone suggests that to your mom, get a second opinion. They sometimes do that if the tumor(s) are in one location, but mine are sprinkled all over my two lungs, so removing them all is not an option. I didn't want surgery anyway. I do know another lady through LACNETS.org that had one giant typical carncinoid (lung NETs), had one lobe of her lung removed 10 years ago, no other treatment, and she's never had another issue. She does her annual CT scan. She's 80 now I believe. Lots of great success stories with lung NETs/DIPNECH.

Resources: LACNETS.org, NANETS.net, carcinoid.org for lots of educational information. Also look at presentations on YouTube by Robert Ramirez DO. Search his name and DIPNECH and DIPNCH as it's misspelled in his latest video "You've been diagnosed with lung NETs and DIPNCH now what?"

In summary, you want an experienced NETs multidisciplinary team. You want experience, experience, experience. If uncomfortable with anything you hear, don't ever hesitate to get a second opinion from another NETs specialist.

I'm extremely hopeful for your mother! I'm excited that she may soon she a great improvement in her chronic symptoms! Hallelujah for a diagnosis! I hope something in here is helpful.

Jump to this post

Hi @bcraft. I'm new to this site too and what brought me here was a search about DIPNECH. It's a rare disorder with only a couple hundred document cases so I was excited to find someone else who had it. They do believe it is underdiagnosed because doctors are unfamiliar. Even after discovering 50+ tumors in both my lungs in 2008, it went undiagnosed for 12 years. At least 20 specialists over the years were baffled. The point being, you don't want to see just any oncologist, you want one familiar with DIPNECH and neuroendocrine lung carcinoids. You need a multidisciplinary NETs team. Oncologists and thoracic surgeons in my highly populated area hadn't heard of it. You'll need a top center like Mayo or UCLA where I go. MD Anderson in Houston. Maybe Baylor in Dallas is what you saw. There are others. You also want them to have experience. If a newly formed team, did they recruit experienced specialists? You also need NETs speciality centers that have the proper imaging equipment for the DOTATATE PET/CT scan (Ga68, Cu64). Not just any PET scan machine will do. NETs/DIPNECH is not treated like regular smoking lung cancer. DIPNECH primarily hits non-smoking women in their 5th and 6th decade often with a 10-20 year history of coughing and SOB.

The good news about DIPNECH is it's slow growing and only turns into cancer about 20% of the time. Even if it turns into atypical carcinoids, it's still slow growing. The issue is, it usually involves multiple tumors and causes a lot of respiratory symptoms like chronic coughing and shortness of breath upon exertion. I was also always coughing up clear mucous all day long. Mine did turn into cancer -- typical carcinoids. But it hasn't spread outside the lung -- again very slow growing. I had a chronic cough for 30 years until I started taking Octreotide injections for this. I receive an injection every 4 weeks. It has side effects, but has changed my life by significantly reducing my symptoms. DIPNECH is often misdiagnosed as COPD or asthma. I was told asthma, but the inhalers weren't helping. They sometimes give cortisone for DIPNECH. No one wants to be on cortisone long term. I didn't have that. Try one med at a time. Octreotide is all I've needed. The only other treatment I had was destroying the largest carcinoid that was 2.5 cm. An interventional radiologist at UCLA performed microwave ablation to destroy it. He said if any other tumors hit 2 cm, we will do it again because those are the most likely to metastasize. Lung NETs doesn't always metastasize. Not only did the octreotide help my symptoms day to day, but now I'm also a lot less sensitive to scented products that always triggered coughing. It was so hard for me to be around people especially crowds for 30 years. I felt like I was allergic to people!

As for finding a specialist. Mayo clinic MN has a neuroendocrine oncologist who is familiar with DIPNECH, Thor Halfdanarson MD. The oncologist I see speak about lung NETs and DIPNECH most is Robert Ramirez DO at Vanderbilt University. The NETs community of professionals is a tight one since NETs is rare and under-researched. I'm wondering if you contact these two NETs/DIPNECH specialists, if they can identify the closest qualified NETs team for you. Maybe?? Most NETs is GI. Lung cases are only about 25% of NETs cases (only 2% of lung cancer cases) and they are treated differently than your common lung cancer so you want Lung NETs/DIPNECH specialists.

One last thing, because UCLA is an hour away from me, two hours in traffic, I don't like going up there when I have a medical center right next door. I see my local oncologist for breast cancer treatment and he coordinates with the UCLA NETs oncology team for treatment on that. My local oncologist orders the octreotide for me so I can have the injections at his office. Easy. I'm in and out in 15 min for that. I did have to go up to Los Angeles for the microwave ablation, the DOTATATE PET scan and my periodic CT scans (because they said their radiologists know what to look for). Other than that, I do video calls to talk to my lung NETs oncologist and my interventional radiologist up at UCLA (his PA said people come from all over the country to see him). It all works out very well and ensures I receive the appropriate and experienced treatment. Maybe you can have the nearest NETs specialty team coordinate with a local oncologist? Some people have lung carcinoids (NETs), no DIPNECH. Some have DIPNECH, no carcinoids (NETs). The minority, like me, have both. I haven't had any part of my lung removed so if anyone suggests that to your mom, get a second opinion. They sometimes do that if the tumor(s) are in one location, but mine are sprinkled all over my two lungs, so removing them all is not an option. I didn't want surgery anyway. I do know another lady through LACNETS.org that had one giant typical carncinoid (lung NETs), had one lobe of her lung removed 10 years ago, no other treatment, and she's never had another issue. She does her annual CT scan. She's 80 now I believe. Lots of great success stories with lung NETs/DIPNECH.

Resources: LACNETS.org, NANETS.net, carcinoid.org for lots of educational information. Also look at presentations on YouTube by Robert Ramirez DO. Search his name and DIPNECH and DIPNCH as it's misspelled in his latest video "You've been diagnosed with lung NETs and DIPNCH now what?"

In summary, you want an experienced NETs multidisciplinary team. You want experience, experience, experience. If uncomfortable with anything you hear, don't ever hesitate to get a second opinion from another NETs specialist.

I'm extremely hopeful for your mother! I'm excited that she may soon she a great improvement in her chronic symptoms! Hallelujah for a diagnosis! I hope something in here is helpful.

Jump to this post

I am currently having SBRT to radiate 2 carcinoid lung tumors that are 1.5 cm. They were found accidentally on a ct scan. I had a dotatate pet scan after that. I am having no symptoms but my oncologist wants me to start on octreotide because of the other smaller tumors. Could you please tell me your side effects?

Jump to this post

Thank you so very much for your thorough advice. I really appreciate it. I found 4 neuroendocrine oncologists, one at Baylor Dallas and 3 at UTSW Dallas. I’ll get her to start there because the oncologist recommended to her has yet to set up an appointment. I did see Dr. Ramirez’s video a couple days ago and thought about calling his office. I’ll see what I can get her to agree to. Thank you again!

Jump to this post

I am currently having SBRT to radiate 2 carcinoid lung tumors that are 1.5 cm. They were found accidentally on a ct scan. I had a dotatate pet scan after that. I am having no symptoms but my oncologist wants me to start on octreotide because of the other smaller tumors. Could you please tell me your side effects?

Jump to this post

Hi @bcraft. I'm new to this site too and what brought me here was a search about DIPNECH. It's a rare disorder with only a couple hundred document cases so I was excited to find someone else who had it. They do believe it is underdiagnosed because doctors are unfamiliar. Even after discovering 50+ tumors in both my lungs in 2008, it went undiagnosed for 12 years. At least 20 specialists over the years were baffled. The point being, you don't want to see just any oncologist, you want one familiar with DIPNECH and neuroendocrine lung carcinoids. You need a multidisciplinary NETs team. Oncologists and thoracic surgeons in my highly populated area hadn't heard of it. You'll need a top center like Mayo or UCLA where I go. MD Anderson in Houston. Maybe Baylor in Dallas is what you saw. There are others. You also want them to have experience. If a newly formed team, did they recruit experienced specialists? You also need NETs speciality centers that have the proper imaging equipment for the DOTATATE PET/CT scan (Ga68, Cu64). Not just any PET scan machine will do. NETs/DIPNECH is not treated like regular smoking lung cancer. DIPNECH primarily hits non-smoking women in their 5th and 6th decade often with a 10-20 year history of coughing and SOB.

The good news about DIPNECH is it's slow growing and only turns into cancer about 20% of the time. Even if it turns into atypical carcinoids, it's still slow growing. The issue is, it usually involves multiple tumors and causes a lot of respiratory symptoms like chronic coughing and shortness of breath upon exertion. I was also always coughing up clear mucous all day long. Mine did turn into cancer -- typical carcinoids. But it hasn't spread outside the lung -- again very slow growing. I had a chronic cough for 30 years until I started taking Octreotide injections for this. I receive an injection every 4 weeks. It has side effects, but has changed my life by significantly reducing my symptoms. DIPNECH is often misdiagnosed as COPD or asthma. I was told asthma, but the inhalers weren't helping. They sometimes give cortisone for DIPNECH. No one wants to be on cortisone long term. I didn't have that. Try one med at a time. Octreotide is all I've needed. The only other treatment I had was destroying the largest carcinoid that was 2.5 cm. An interventional radiologist at UCLA performed microwave ablation to destroy it. He said if any other tumors hit 2 cm, we will do it again because those are the most likely to metastasize. Lung NETs doesn't always metastasize. Not only did the octreotide help my symptoms day to day, but now I'm also a lot less sensitive to scented products that always triggered coughing. It was so hard for me to be around people especially crowds for 30 years. I felt like I was allergic to people!

As for finding a specialist. Mayo clinic MN has a neuroendocrine oncologist who is familiar with DIPNECH, Thor Halfdanarson MD. The oncologist I see speak about lung NETs and DIPNECH most is Robert Ramirez DO at Vanderbilt University. The NETs community of professionals is a tight one since NETs is rare and under-researched. I'm wondering if you contact these two NETs/DIPNECH specialists, if they can identify the closest qualified NETs team for you. Maybe?? Most NETs is GI. Lung cases are only about 25% of NETs cases (only 2% of lung cancer cases) and they are treated differently than your common lung cancer so you want Lung NETs/DIPNECH specialists.

One last thing, because UCLA is an hour away from me, two hours in traffic, I don't like going up there when I have a medical center right next door. I see my local oncologist for breast cancer treatment and he coordinates with the UCLA NETs oncology team for treatment on that. My local oncologist orders the octreotide for me so I can have the injections at his office. Easy. I'm in and out in 15 min for that. I did have to go up to Los Angeles for the microwave ablation, the DOTATATE PET scan and my periodic CT scans (because they said their radiologists know what to look for). Other than that, I do video calls to talk to my lung NETs oncologist and my interventional radiologist up at UCLA (his PA said people come from all over the country to see him). It all works out very well and ensures I receive the appropriate and experienced treatment. Maybe you can have the nearest NETs specialty team coordinate with a local oncologist? Some people have lung carcinoids (NETs), no DIPNECH. Some have DIPNECH, no carcinoids (NETs). The minority, like me, have both. I haven't had any part of my lung removed so if anyone suggests that to your mom, get a second opinion. They sometimes do that if the tumor(s) are in one location, but mine are sprinkled all over my two lungs, so removing them all is not an option. I didn't want surgery anyway. I do know another lady through LACNETS.org that had one giant typical carncinoid (lung NETs), had one lobe of her lung removed 10 years ago, no other treatment, and she's never had another issue. She does her annual CT scan. She's 80 now I believe. Lots of great success stories with lung NETs/DIPNECH.

Resources: LACNETS.org, NANETS.net, carcinoid.org for lots of educational information. Also look at presentations on YouTube by Robert Ramirez DO. Search his name and DIPNECH and DIPNCH as it's misspelled in his latest video "You've been diagnosed with lung NETs and DIPNCH now what?"

In summary, you want an experienced NETs multidisciplinary team. You want experience, experience, experience. If uncomfortable with anything you hear, don't ever hesitate to get a second opinion from another NETs specialist.

I'm extremely hopeful for your mother! I'm excited that she may soon she a great improvement in her chronic symptoms! Hallelujah for a diagnosis! I hope something in here is helpful.

Jump to this post