Lung nodule could be slow growing carcinoid: Watch and wait is scary

@jball77
You might consider messaging your surgeon through the patient portal to see if breathing exercises would be helpful prior to surgery.

We have other members with lung NETs like @collielady @tonyhasumners @emilyfaith @pattirushing @diana5 @kristin3 @californiazebra @rogo @melmangen @coco1 and many others. I hope that they will join this discussion to discuss their surgical experiences.

What other questions do you have regarding the upcoming surgery?

My surgery is scheduled for the end of May which is further out than I had hoped, but I am using the time to maximize my health. I am walking 3-4 miles a day and have started strength training. I have heard of some people doing lung exercises prior to surgery. I have wondered about that.

@jball77

I am glad to hear that you are going to Mayo. If you are being treated at Mayo, you probably are already being followed by the NET team, but it wouldn't hurt to inquire about it.

Do you have a date for your surgery?

Honestly, the only symptom I was aware of was pain in my chin. I was also having shortness of breath when going up hills and stairs, but I just thought I needed to get into shape. The tumor was found when I had a spirometry test prior to getting tested for allergies.
I am going to Mayo, Rochester for the surgery to remove the tumor. Do you think I should request an appointment with a NET specialist also?

Hello @jball77 and welcome to Mayo Connect. As others have said, it is wise to have at least one consultation with a NETs specialist. Mayo Clinic has NET specialists at all of their locations (MN, FL and AZ). If you would like to have an in-person or virtual appointment, here is a link with appointment information, http://mayocl.in/1mtmR63.

If for any reason you are not able to see a NET specialist at Mayo, here is a list of NET specialists worldwide, https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.

What type of symptoms were you having, @jball77, that led to this diagnosis?

I did 5 year watch on my lung nodules. then accidentally with through CAT scan two nodules were showing growth. My personal feeling was for them to do a Bronchoscopy, of my airway, and biopsy both lung nodules and yes it was neuroendocrine tumor/carcinoid, NETS, for short. They said slow growing most likely. I ask for PET/CAT skull Base to mid thigh GA68-Netspot, which most of the time will find any other active NETS in my body. It is l feel helpful to know my NETs were not anywhere else. I am going for second opinion to be on the safe side, also to find a NET team l can turn too! Blessings

In 2019 I had to have a pet scan because I was having liver issues - probably from my thyroid meds for Graves Disease. The PET showed a small lesion in the bottom right lobe of my lung, and, a small growth on/in my right ovary. I was referred to a thoracic surgeon re the lung and he said it was so small that wasn't worth an invasive biopsy and to just watch it. Over the years, I had mri's and slowly over the years the little fella grew. Then, one year, we decided to give myself a break from all the radiation and I cut back on some of the mris/cts, etc. When it came time for my wellness check up, my Dr requested a pelvic ultrasound. The growth on my ovary had grown significantly and when the technician had laid her hand on my abdomen, and did the internal ultasound, I knew I was in trouble because it was very uncomfortable. I was referred to a gynecologic oncologist whom wanted a PET scan done to determine what type of surgery would be required to reqmove the growth in my ovary, laprascopic or lapraotomy. Another PET was done and the lesion in my lung had grown and "lit up" on the PET scan. The Gyn Onc then had ordered a lung biopsy - don't ever want to do that again....and the biopsy determined that the lesion was a low grade neuroendocrine lung tumour. I was then referred to a Medical Oncologist close to where I live, whom, I might add is a wonderful Dr, and, was also given the name of an Oncologist @ Cedars Sinai in LA that specializes in Neuroendocrine cancer and has a multi-disciplinary team. I've had appointments with both, and, it was decided that because the growth in my ovary was doubling in size, that I should have that surgery first and then deal with my lung because the cancer was "slow growing". I the gynecologic surgery April 15th. At my last apt with Dr Andrew Hendifar @ Cedars Sinai, LA, he said I could "wait and see" with regards to the lesion in my lung. I told him , I would rather have it removed while I am still "younger" - HA!! at 66, and while my heart has no issues. So, that will be the next surgery. I have been referred to Dr Andrew Brownlee, Thoracic Surgeon, Cedars Sinai whom also specializes in neuroendocrine cancer. I am waiting for my appointment with him to see when what and when. Ive done a lot of reading from people who have any type Neuroendocrine cancer and they can't say enough about being under the care of Drs who specialize in Neuroendocrine Cancer with mult-disciplinary teams. I'm so thankful I was referred to Dr Hendifar and their team has accepted me as a patient. BTW, I also had a PET Scan with the dotatate, which then showed my thyroid nodules were lighting up on the scan - again, the right side.... weird.... and that will be the next thing to be considered once my lung cancer has been resolved.

My tumor team talked about surgery but they would have taken the entire lung. The radiologist said he could target the tumors with sbrt radiation. The team agreed this was the best option so I did it a year ago. I do get monthly sandostatin injections which I have had no problems with. So far so good! Hope all goes well for you.

I have been just diagnosed with a bronchial carcinoid. I thought my only option was surgical removal, possibly including part/all of the right lung. Was this an option for you? What was the process leading to your treatment. I honestly feel like I have had no process.

A small nodule was discovered incidentally in an x-ray 10 years ago in my left lower lung. We checked it via more x-rays periodically as it incrementally grew. From pre to post covid it had grown to 1.3 cm so I then had a CT, Pet scan, and then biopsy to determine the type of pathology. It was determined to be a low grade neuroendocrine tumor (typical carcinoid) of the lung. It was decided to excise my left lower lung called left thoracoscopy with left lower lobectomy with systemic lymph node dissection. I had no symptoms prior to the surgery. I will have periodic scans as a follow-up.