Describe your recovery from lung NET surgery

I coughed constantly for 30 years due to lung NETs and DIPNECH but octreotide injections for the past 3 years have brought it down to normal and it has been life changing for the better. Still have some abnormal shortness of breath upon exertion but that has improved too.

what a relief for you!! I'm so glad.

@californiazebra
How and where were you diagnosed with DIPNECH? Did you end up having surgery? I have also been coughing for 30 years and have multiple small nodules that have been monitored. I'm non smoker with COPD. They are saying possible DIPNECH? Now I have a slow growing 1.2 mm carcinoid LLL and 0.6 mm in the RML. I had a biopsy which did not test for DIPNECH. The surgeon reccommends segmentectomy, possible lobectomy of the larger carcinoid. He will refer me to a DIPNECH specialist afterwards. I'm trying to get few second opinions on this before I decide on surgery.

@emilyfaith Hi, I was just wondering how you are doing and if you had the surgery? I was also diagnosed with left lower lobe carcinoid and the surgeon reccommends segmentectomy, possible lobectomy. I am also seeking second opinions from NET specialists.

I had a lung tumor found on a CT scan for my heart. It lit up on a PET scan and was referred to a pulmonologist who thought it might be a good idea to do a biopsy. I opted to get a second opinion from Memorial Sloane Kettering and I’m so glad I did! I was seen within a week, and my Dr. immediately suspected a carcinoid, tumor, and possible DIPNECH! I ended up with a right middle lobe lobectomy, andDIPNECH diagnosis. I am forever grateful my doctor was so knowledgeable and skilled. Recovery took some time as I was 74 then. It’s been 2 1/2 years of being scanned every six months for follow up, but I am still stable with no changes thankfully so I’m switching to once a year CT scan. I was told they don’t usually remove the tumors until they get a certain size or become a problem, but in my case, there were several in one lobe, and one of them had grown and had some malignancy, so they removed the lobe. Thankfully, my symptoms are not real severe, so I am not on any treatment at this point.

@pantfan
Hello! I’m 79 and 2 years ago suspicious tumors were found in both lungs. Only tumors in LLL were of most concern. Results of the typical biopsies indicated a scarcity of certainty as to type of tumor. Best guess was carcinoid type. I was under the care of a thoracic surgeon with no experience with carcinoid tumors. She was ready to operate within the week. IMPORTANT!! Neuroendocrine tumors are different from other lung tumors!
I believe God was watching over me . I made an appointment with a NET specialist and was seen within 2 weeks. The tumor location in the lungs is rarer than other locations. So a treatment center with experience with lung tumors is VERY IMPORTANT. Do follow through with another opinion with NET experience!

My oncologist is now a NET specialist. My scans, including Dotatate, are stable. I don’t have any symptoms. There are no red flags with the blood work. So I’m comfortable with the wait and observe plan.

Most important message is to get a 2nd opinion with a NET specialist!

This is a difficult period you’re going through now. Knowledge is power. I wish you the best.

emilyfaith thank you very much. Would you be able to share where is your NET oncologist located? I attempted the dotatate scan however had an allergic reaction to the iv contrast so the test could not be completed.

@pantfan
Hello,
My oncologist is at Dana Farber in Boston. I get the Dotatate scans in Boston at MA Gen/Brigham&Womens.
I live in Attleboro,MA. Where do you live?

So sorry you have a bad reaction to the iv contrast. There must be an alternative available.

@emilyfaith I live in Upstate New York. Unfortunately my oncologist did not have another alternative to the dotatate to offer. He does agree that my condition will be better monitored by a lung NET specialist team. I have actually been thinking of calling Dana Farber. Who do you see there and did you need a referral?

@pantfan
Just reading your story, it sure sounds like DIPNECH. First, I agree with others that you need to get a second opinion with a NETs specialist before you have any treatment. If your surgeon is not a NETs specialist, take a pause. NETs is not treated the same as other lung cancers. Do you have typical carcinoids -- the very slowing growing kind? Typical carcinoids and DIPNECH are non-smoking conditions and typically diagnosed in middle-aged women after years of symptoms and misdiagnoses. COPD is often one of the misdiagnoses. I kept being treated for asthma and the inhalers not only didn't help, they made my cough worse. Sorry you're allergic to contrast. That's unfortunate. I had one DOTATATE scan, but it turns out I don't have the somatostatin receptors so we just monitor with chest CTs every 6 months.

When I had my first chest CT in 2008 for chronic bronchitis, they discovered I had over 50 lung nodules spread across both lungs, all lobes. They couldn't reach any nodules for a needle biopsy and I refused an open chest biopsy. 20 specialists of all kinds took guesses over the next 12 years about what it was and were all wrong. In 2020, when my breast cancer (not related) came back, they said they could now do a needle biopsy on the largest 2.6 cm nodule in my LLL. They wanted to be sure it wasn't breast cancer spread there. They discovered it was a typical carcinoid. My own research led me to a Mayo article about DIPNECH and bingo, I knew that had to be it. I asked to be referred to the UCLA NETs team (away from the local thoracic surgeon my breast oncologist lined up for me). My breast oncologist knew nothing about NETs or DIPNECH. UCLA diagnosed me with DIPNECH based on scans, number of nodules, patterns, and various other lung issues they could see.

For me, they did not want to surgically remove the largest nodule because they want to preserve as much healthy lung tissue as possible given all lobes are affected. They did a microwave ablation (probes thru my back into the tumor) to destroy the tumor 5.5 years ago. It was successful and hasn't come back. They may need to ablate others in the future if one nodule starts to grow faster or behave differently from the rest. They'll destroy any like that to prevent metastasis which is less likely in typical carcinoids, but can happen. Based on symptoms, I've had DIPNECH/carcinoids for probably 40 years and it's still confined to my lungs. I hope you find that encouraging. It's great news!

I've been taking an octreotide injection every 28 days for 5 years and it stopped my cough, reduced mucus, helped shortness of breath and made me much, much less chemically sensitive to fragrances and cleaning agents. As a miracle side benefit it suppresses histamines and greatly improved my animal allergies so I can even pet animals for the first time in my adult life and go into homes with animals. I love animals! It has been life-changing! It does have some side effects, but they are so much better for me than the chronic cough was, I'll never stop taking the injections so long as they work. And, the octreotide is ordered by my NETs oncologist in Los Angeles, but I get the octreotide shots at my local breast oncology office so it's very convenient. A distant NETs team is willing to coordinate with a local team. I hope you can find the right providers and enjoy the same success.