1. < Neuroendocrine Tumors (NETs)

Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Posted by triveraderubio @triveraderubio, Nov 10, 2022

Good morning. My prayers and blessings to all on this page of interest.

This is a new journey for me. Underwent a lung biopsy due to chronic cough, shortness of breath and many long lasting episodes of bronchitis. The biopsy revealed Carcinoid Tumorletts (slow growing cancer) related to DIPNECH. I always thought my chronic cough was due to asthma, but it was not. I did research to understand the diagnosis on this very rare disease; especially in the lungs.

After the biopsy, I was prescribed Trelegy Ellipta and steroids, but these medications did not suppress symptoms. I searched for an Oncologist who studied my case for a while, discussed amongst other colleagues, and ran a series of tests. After several discussions of alternative treatment, I am to start treatment with Octreotide Injection every 28 days.

Hopefully this will suppress the cell growth and improve symptoms.

Be Blessed and Remain Safe.

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

ggiinnaa | @ggiinnaa | 2 days ago
In reply to @californiazebra "@ggiinnaa You'll enjoy life a lot more without the chronic cough. Ask about octreotide injections. Life..." + (show)
@californiazebra

@ggiinnaa You'll enjoy life a lot more without the chronic cough. Ask about octreotide injections. Life changing for me after 30 years of coughing all day long. Best of luck.

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Thank you

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Zebra | @californiazebra | 2 days ago
In reply to @ggiinnaa "I too have small carcinoids in my lungs. In August 2022 I had my right upper..." + (show)
@ggiinnaa

I too have small carcinoids in my lungs. In August 2022 I had my right upper lobe removed with a small section of my right lower lobe. I have a cough. I was told to enjoy life, not to worry, and have cat scans every 6 months. If the carcinoids grow then they consider treatment
I try to enjoy life but the cough is not fun and I do worry if I shoujd be having treatments now

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@ggiinnaa You'll enjoy life a lot more without the chronic cough. Ask about octreotide injections. Life changing for me after 30 years of coughing all day long. Best of luck.

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1 reply
ggiinnaa | @ggiinnaa | 2 days ago
In reply to @rogo "I was diagnosed with this rare condition 6 years ago . I had a persistent cough..." + (show)
@rogo

I was diagnosed with this rare condition 6 years ago . I had a persistent cough and got out of breath easily . After a lung biopsy , I was diagnosed with multiple carcinoids . I have been in the care of excellent doctors at Princess Margaret Hospital in Toronto , a world leading cancer hospital . I was told no treatment, just Ct scans and X-rays every 6 months to monitor these carcinoids . Several doctors assured me this is a very slow growing condition , and the better of all possible cancers , with excellent prognosis and long life . Three months ago , they noticed one of the carcinoids started to grow . After much deliberation, they suggested I remove a lobe of my lung . They told me I could do it now or later in time . As I am 70 , I chose to do it . It was a very unpleasant surgery , but it is done and 3 months later I am perfectly fine . I will have to continue to monitor the other small carcinoids the rest of my life . Hopefully , what they told me is true , that these carcinoids rarely spread ,and only grow at a very slow rate . They told me I have many more years to go . I would love to hear other experiences.

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I too have small carcinoids in my lungs. In August 2022 I had my right upper lobe removed with a small section of my right lower lobe. I have a cough. I was told to enjoy life, not to worry, and have cat scans every 6 months. If the carcinoids grow then they consider treatment
I try to enjoy life but the cough is not fun and I do worry if I shoujd be having treatments now

REPLY
1 reply
Zebra | @californiazebra | Dec 28, 2023
In reply to @ocean3131 "I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who..." + (show)
@ocean3131

I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who have DIPNECH to share experiences and how they are dealing with it. My biggest issue is constant coughing.

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Hi @ocean3131
I also have DIPNECH and you can read my other posts for more details but coughing constantly for 30 years was a nightmare. Also coughed up clear mucus all day and had shortness of breath issues. I’ve been taking monthly octreotide injections for almost 3 years now and it has been life changing in stopping the cough and mucus and improving the shortness of breath. It was like I had bronchitis for 30 years straight. It annoyed me and everyone around me so we’re all thankful for octreotide.

Have you seen a NETs specialist? I was told the symptoms are not caused by the tumors we can see but by hundreds or thousands of tiny nodules that line my airways and don’t show up on the CT scan. You need someone who has treated other DIPNECH patients. My case is managed by a multidisciplinary lung NETs team at UCLA but I receive the injections at my local breast oncology office (I have breast cancer too) so I don’t have to drive to LA for them. Very convenient. I have video calls with my UCLA lung team. You came to the right group. DIPNECH is rare. Feel free to send me a private message as well.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Dec 28, 2023
In reply to @ocean3131 "I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who..." + (show)
@ocean3131

I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who have DIPNECH to share experiences and how they are dealing with it. My biggest issue is constant coughing.

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Hello @ocean3131, as @hopeful33250 mentioned, I have moved your discussion and combined it with an existing discussion titled, "Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH" - https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/. Here you can meet other members discussing their diagnosis of DIPNECH.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 28, 2023
In reply to @ocean3131 "I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who..." + (show)
@ocean3131

I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who have DIPNECH to share experiences and how they are dealing with it. My biggest issue is constant coughing.

Jump to this post

Hello @ocean3131 and welcome to the NETs support group on Mayo Connect. I'm sorry to hear of your new diagnosis. A new diagnosis such as this can be concerning and it is good to meet wth others who are on this same journey. We have another discussion group that deals with Dipnech. Here is the link,
https://connect.mayoclinic.org/discussion/carcinoid-tumorlets-neuroendocrine-tumorcell-hyperplasia-dipnech/
As you read the posts you will meet others such as @triveraderubio @amd12 @rogo @larenn. Feel free to read their posts and to ask questions and/or express your concerns. The members of Connect are eager to support each other.

As you likely know "diffuse idiopathic pulmonary neuroendocrine cell hyperplasia (DIPNECH) is a rare and poorly understood lung condition that is characterized by the abnormal overgrowth of certain cells in the lung (called pulmonary neuroendocrine cells) that receive signals from nerve cells (neurons) and produce hormones."
Read more here https://rarediseases.info.nih.gov/diseases/10780/diffuse-idiopathic-pulmonary-neuroendocrine-cell-hyperplasia

Please share, as you are comfortable doing so, if there were other symptoms other than the persistent cough that alerted your doctors to diagnosis this issue. Did it take a long time to be diagnosed?

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ocean3131 | @ocean3131 | Dec 28, 2023

I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who have DIPNECH to share experiences and how they are dealing with it. My biggest issue is constant coughing.

REPLY
3 replies
mcohan | @mcohan | Nov 12, 2023
In reply to @californiazebra "I met a lady through a NETs organization who told me she had a lung lobe..." + (show)
@californiazebra

I met a lady through a NETs organization who told me she had a lung lobe removed due to a 9 cm NETs tumor. She was 70 and is now 80 and has had no additional NETs issues. She just has a CT scan once a year. Also didn’t have any respiratory issues from the surgery and she feels great. I’m very hopeful that those of you with a single tumor or tumors in the same lobe will be one and done with surgery and go on to be NETs free for life. Prayers for you that you’ll heal quickly.

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Thank you!
I am 72. They found these carcinoids on CT for colon cancer.
I had colon surgery and a round of chemo.
Now having lung surgery.
I really would like to communicate with someone who had the same surgery.
The colon surgery was no problem .. out of hospital the day after surgery.
I think this one is going to be harder.. don’t like idea of chest tube! 😩

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Zebra | @californiazebra | Nov 12, 2023
In reply to @mcohan "I am having my lower right lobe removed on Nov. 21 I have 2 typical carcinoids....." + (show)
@mcohan

I am having my lower right lobe removed on Nov. 21
I have 2 typical carcinoids..
Can you tell me what to expect for the surgery.
I will have it done at Emory University hospital in Atlanta.

Jump to this post

I met a lady through a NETs organization who told me she had a lung lobe removed due to a 9 cm NETs tumor. She was 70 and is now 80 and has had no additional NETs issues. She just has a CT scan once a year. Also didn’t have any respiratory issues from the surgery and she feels great. I’m very hopeful that those of you with a single tumor or tumors in the same lobe will be one and done with surgery and go on to be NETs free for life. Prayers for you that you’ll heal quickly.

REPLY
1 reply
mcohan | @mcohan | Nov 12, 2023
In reply to @mieczyslaw "I was diagnosed with non-small cell neuroendocrine lung cancer. Stage 1. I had my right lower..." + (show)
@mieczyslaw

I was diagnosed with non-small cell neuroendocrine lung cancer. Stage 1. I had my right lower lobe of my lung removed. Can anyone tell me in my language, how worried I should be about Diffuse idiopathic pulmonary neuroendocrine cell hyperplasia. I have tumourlets are in my bronchial and each f my lungs. They are slow growing. But have been there for five years. I know I "should not worry". But I am.

Jump to this post

I am having my lower right lobe removed on Nov. 21
I have 2 typical carcinoids..
Can you tell me what to expect for the surgery.
I will have it done at Emory University hospital in Atlanta.

REPLY
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