Describe your recovery from lung NET surgery

@tomrennie slow growing neuroendocrine lung tumor 2.2cm removed, a year later nothing on dotate scan seen. With additional Hashimotos Disease, MDA 5 postive Dermomatomyositis, Sjogrens, and Reynauds. Before the cancer was removed there was also NXP2 showing in my tests, it is gone now. They would say thats rare might be a mistakr and then a different lab would pick it up and they would say we just dont know, there os very little known about it. While, I still struggle with intense pain in my legs and neck, it is better without the tumor. No one really knows what to do to treat it. Some days are very difficult others are better.

@sbrown959
My surgery was on 9/22/25
Everyday is different
GERD
SHORT OF BREATH
INTERMITTENT COUGH
NERVE PAIN
Weather impacts if I can go
outside- humidity and heat
extreme cold all impact
me

No other option but surgery
It is an ongoing adjustment

@sbrown959 Other than the neuroendocrine lung tumor, I don't know what any of the other diagnoses are. Have you sought out input from a palliative care doctor to help with the pain?

@tomrennie yes, but all I get is, "I don't know." They say it is all rare and there is not much research, but AI seems to have a lot.

Hello @sbrown959

I think @tomrennie's suggestion (to see a palliative care doctor) is a good idea. They can help with pain management. It would be good to ask your oncology team to refer you to a palliative care team. Here is a link with information about palliative care from Mayo Clinic's website:
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637
Here is a link to a Mayo Connect discussion group where members discuss their experiences with palliative care:
--How to Care for Chronic Pain
https://connect.mayoclinic.org/discussion/how-to-care-for-chronic-pain/
I look forward to hearing from you again. Will you post about your progress in dealing with this pain?

Hi everyone. I had a lower right lobectomy over a year ago now for typical carcinoid, I believe it was 3.9 cm. I was told it would be a 6 week recovery and that I wouldn't notice much of a change after. I'm a 45 yo active woman. Instead I didn't feel I turned a corner until 6 months, and I do not feel the same. For a couple months after the surgery I had intense nerve pain in the front under the ribs but that faded. I had difficulty breathing for months, I had coughing fits anytime I bent down like when unloading the dishwasher, I was so frustrated and confused at the long and difficult recovery despite being told 6 weeks. I was told I didn't need a pulmonologist and eventually went to see one anyway, and am now on a maintenance inhaler and albuterol despite never having asthma before. All things being relative I'm doing well, and these days I'm at the gym 3x a week -- on the elliptical, lifting weights, or doing Zumba. I can't really run or sprint anymore (like catching the school bus with my kid, or trying out laser tag really strained me). What brought me here is that since December I've had intense charley-horse kind of cramps, not where I had my incisions but in the front, inside the ribs under the breastbone. I used to have the nerve pain near there. It was first triggered by an abdominal machine at the gym, and later on by sitting in a certain position or sneezing would trigger it. They get so bad that I cry out at home, or silent scream in my head if I'm at work. I continued to work out and they decreased, but sometimes sitting in a certain position still triggers them. Tonight I could feel the knot of muscle at the site after it happened. It's always the same location. Does anyone else experience this? My oncologist, surgeon, and primary care doctor have all waved it off as likely being deconditioned following the surgery. It does appear to be a muscular issue. AI tells me that others experience this, and that it could be due to the structural lining of muscles and the abdominal wall changing after my lobectomy, or even the way my diaphragm has adjusted since the surgery. It does not feel like a lung issue, and my PET scan and CT scan have been clear (though the latter revealed a surprise kidney stone!). Also, if anyone in the Boston area can share their experiences with recovery and surveillance and doctors that would be welcome. Or how anyone who was active in the before has adjusted with returning to fitness. Thanks in advance!

@wushirl
I had my surgery in
September 2025.
The interventional pulmonologist said it takes a year or more to recover.
I have shortness of breath and an intermittent cough and nerve pain. Everyday is different. Was your surgery robotic? My medical care/ surgery is in NYC. I see a
pulmonologist and for surveillance I choose a thoracic oncologist.

@haelsky Can I ask what an interventional pulmonologist is?

I'm sorry to hear you still have nerve pain. I believe my surgery was VATS.

My shortness of breath varies. Sometimes I go for a walk with coworkers at lunch, and I don't know if it's the humidity or pace but I get a little winded. But, with my albuterol I'm totally capable of doing a full hour of Zumba now. The beginning of class was sometimes more difficult but would get easier as it went on. Sometimes a brisk pace up the stairs makes me wheeze.

Wishing you continued healing!

@wushirl
An interventional pulmonologist does biopsies - minimally invasive procedures. Pulmonologist only medications.

Just going for my 3 rd Broncoscopy, this time with biopsy as they are checking to see if I have 2 types of lung nodules. Very worried as 3 of them are growing over 3mm. Surgeon seems very keen on research. I have tried 4 types of inhalers and they all make me cough harder and provide no relief. I really do not cough much but when I do it is a fit. Hoping to keep up to date here and get help deciding the issues as they arise. Had the carcinoid tumors discovered 30 years ago at age 40. They have been watched sporadically for growth only for the last 6 years but only difference is that I now sleep with oxygen and a CPAP. I use oxygen over 7000 ft. And with strenuous exercise.