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Sarcoidosis and Lung NET, upcoming surgery
Way back in 2007 I was diagnosed with sarcoidosis in my lungs. At that time they mentioned a nodule of 8 mm in my left lung, but we treated the sarcoidosis and that was that. In 2020, the nodule was again noticed and was 14.1 mm. No mention was made of treating it at that time, but I wonder if the sarcoidosis and lung NET might be related.
In late 2023, I went for an abdominal scan and the nodule had grown to 17.5 mm. After going on a long-planned vacation, I had a biopsy in April and discovered I have a carcinoid tumor in the middle of my lung. Visits to the oncologist and thoracic surgeon led to an upcoming surgery on July 30. The surgeon says that they will remove roughly half my left lung due to the location of the NET.
Some of my symptoms over the years match NE syndrome-fatigue, flushing, occasional diarrhea. Has anyone with a lung NET also experienced those kinds of symptoms?
I'm a bit freaked by the surgery. It doesn't help that both my mother and brother died from lung cancer and I keep thinking how awful the chest tube seemed to be. I never smoked, so the fact I will be the only family member who loses part of their lung seems a tad unfair. The surgeon says I will be in the hospital 2-4 days and hopefully will go home without the chest tube, but he can't guarantee that. I've read other posts here on postoperative recovery and and hopeful that within a few weeks I'll be mostly back to normal. A 5 hour robotic surgery is way longer than anything I've experienced in my 71 years on the planet, so any voices of experience would be welcome.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Hello @netnan and welcome to Connect. Looking for voices of experience is what Connect is all about. We do have other members who have dealt with lung NETs. I would encourage you to read their posts and feel free to ask questions or make comments by clicking on "Reply" under their post.
Here are some groups that might provide you with some good information
--Lung Nodule
https://connect.mayoclinic.org/discussion/lung-nodule-could-be-slow-growing-carcinoid/?commentsorder=newest#chv4-comment-stream-header
-- Lung NETs and pain in the arm
https://connect.mayoclinic.org/discussion/lung-nets-and-pain-in-arm-pit/
--Describe your recovery from lung NETs
https://connect.mayoclinic.org/discussion/describe-your-recovery-from-lung-net-surgery/
I would also like to invite @diana5 to this discussion.
Have you been having breathing problems or any other symptoms?
Hello @netnan, had left lung NET atypical carcinoid tumor. It was a little bigger - between 3 and 4 sm. My lower lobe of the left lung was removed in the beginning of May. I was also extremely warry about the surgery. I do not recall it taking all 5 hours. May be including the pre- and post- surgery times it did. They also removed several lymph nodes. The breathing after the surgery was very shallow, but with breathing exercise and with time it became much better eventually. I spent only 2 days at the hospital. The tube was removed on the second day. They did not do any anesthesia for that. It was not painful or scary. After surgery only the first couple of weeks were challenging. Trying to cough was extremely painful in the first week. But it all became better after that. I am still feeling shortness of breath and can't tolerate the heat. But I am sure that with proper exercise it will eventually get better.
Good luck to you with your surgery!
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5 ReactionsHi @netnan, I was diagnosed with a 17mm typical carcinoid early this year. I also have many nodules from DIPNECH. After my diagnosis with bronchoscope where the lymph nodes were clear, the thoracic surgeon and oncologist suggested tumor ablation to avoid a lobectomy. I had the procedure in May and it went well and I feel good. I still have to have a CT every few months to monitor if the tumor is ‘shrinking’ and the dipnech tumorlets are stable. Hopefully I have avoided the lobectomy. I just wanted to respond to you that ablation so far, has been a good alternative for me. Best wishes and good luck.
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I also have lung NETs (atypical carcinoids) and DIPNECH with 50+ tumors scattered across both lungs so resection is not even an option. I also had microwave ablation in the largest tumor 2.6 cm 3+ years ago. Went great. Will do more in the future if any reach 2 cm or start to take off from the pack. Most are 1 cm+ right now. Very slow growing. I’ve had respiratory issues for decades and the nodules were discovered in 2008. I’ve been taking monthly octreotide injections for 3+ years and that has greatly managed my coughing, mucus and shortness of breath. It could also help your common NET symptoms. Prayers for you.
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2 ReactionsMy tumors are not in my lungs but in response to the flushing, I experienced flushing over 20 times per day. Started on Lanreotide and for 3 month still had flushing. Then switched to ocreotide and within a few days the flushing stopped for me.. also the diarrhea.. it’s been over 1 year and I thank God it hasn’t returned..
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3 ReactionsThanks to everyone for responding. I am going to check with my oncologist and surgeon about the ablation option as it sounds preferable to losing half a lung for this slow growing, rather small, tumor. I'm also concerned about my left arm following the surgery as in the past month my right arm is starting to suffer pain from disc compression in my cervical spine. I can't do much with the right arm without pain, and the surgery would no doubt cause some issues on the left side, at least for a few months.
On another topic, did most of you go straight home from the hospital or do a short term stay in a rehab facility? I'm a bit worried about the first week or two if I can't put much weight on either arm to lift out of bed or a chair.
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2 ReactionsThe pain in the left arm would probably be depending on how the surgery goes. I only had a lot of pain in the left shoulder closer to the neck for a day while I was still in the hospital. I went straight home after surgery. But I also have adjustable bed which on the click of a button helps to sit you up. That helped tremendously, especially during the first week after the surgery. Depending on your physical condition and if you live alone doing a short rehab may be a good idea.
Hope everything goes well with you!
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3 ReactionsHi @tammyv615
I just read your post again and noticed you said you have followup CTs to see if the tumor is shrinking. My 2.6. cm tumor was completely fried by the microwave ablation. The IR said dead tissue would remain there but after 3+ years there is no sign of life in that tumor. I do have a chest CT every 6 months to monitor all the other tumors.
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1 ReactionHi @californiazebra , my first CT was 6 weeks post ablation, and showed ‘banding’ and what I interpreted as a different shape. I have another ct in September.
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