Describe your recovery from lung NET surgery

@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,
Dana Farber Caner Institute Boston Ma
Anuj Patel MD is my oncologist at Dana Farber. His area of specialty is
gastrointestinal where it is more common for NET tumors to be found. I hope
I didn’t lead you to think his specialty was lung NETS. Patel discusses my
scans and blood work with a NET team so that is advantageous.

You don’t need a referral unless your insurance requires you to have one,
as mine does, from my Prmary Care doc.

Google Dana Farber cancer Institute and all the information you need will
be there for you.

I did find a lung NET specialist who has a lot of experience with treating
patients with lung NETs. Google him to learn more:
Dr. Robert Ramirez
Vanderbuilt University
Nashville, TN

God bless,
Emily Dowling

Emily

@emilyfaith
Thank you so much for sharing Emily. I'm very happy you have found a specialist who's been helpful to you. I have seen youtube videos of Dr. Ramirez discussing lung nets. Dr. Wolin at Mount Sinai is another lung net specialist. I will definitely explore all my options before I decide on having surgery. This whole situation has made me very anxious. I hope I find the right doctor and NET team for my condition.
Thank you again and wishing you all the best.

@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.

@pantfan
Hopefully you saw my reply above. I agree about Dr. Ramirez and he speaks about DIPNECH more than anyone. As for Dr. Wolin, I spoke with a lung NETs patient who saw him when he was at Cedars Sinai in CA and she couldn’t say enough good things about him. She was upset when he moved. Hoping your NETs team will help relieve your anxiety. Never any fun to go through this stuff. Hang in there.

@californiazebra Hi, and thank you for replying. I am so glad I found this forum!
I also discovered the Dipnech phenomenon after doing a lot of research. I believe I definitely fit the Dipnech profile as I've had multiple small nodules on my scans from 30 years ago. I was also treated for asthma and COPD for many years without any success. I could not tolerate any of the inhalers, which made me cough more. My pulmonolgist did not understand why this was happening. I was also treated for allergies without any success. Not many doctors know about Dipnech, not even my lung oncologist did (he had to look it up!).
I also refused the open biopsy and had navigational broncoscopy instead. It's a robotic biopsy which is performed by running a scope through the airways. The biopsy showed a low-grade carcinoid with Ki-67 <5% and no necrosis or lymph node involvment. Unfortunately, they could not distinguish between typical or atypical, and recommended a surgucal resection in order to determine the type.
My doctors did not have any idea about what tumor ablation is. I was steered toward surgery immediately after the biopsy. No one wanted to discuss my other nodules. They suggested SBRT as an alternative if surgery was not an option. I refuse to do radiation. I've had so many scans throughout the years, I wonder if maybe the radiation contributed to my issue?
I'm glad you found an oncologist who was willing to order the microwave ablation to successfully treat the tumor and preserve your lung function. My lung function is compromised due to the chronic cough, and surgery will make it worse. I am looking forward to finding a NET specialist who will help me determine the best treatment for my situation and preserve my lung function. Octreotide injections seem to be working for many Dipnech patients. I also have allergies to animals, parfumes, many odors and dust. Each NET patient needs an individual approach, as there are so many different scenarios.

@californiazebra
Thank you, I did read your post. I called Mount Sinai to see Dr. Wolin. They will schedule an appointment after they receive my reports and slides.

@emilyfaith
Thank you so much for sharing Emily. I'm very happy you have found a specialist who's been helpful to you. I have seen youtube videos of Dr. Ramirez discussing lung nets. Dr. Wolin at Mount Sinai is another lung net specialist. I will definitely explore all my options before I decide on having surgery. This whole situation has made me very anxious. I hope I find the right doctor and NET team for my condition.
Thank you again and wishing you all the best.

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.