Concerns after lobectomy for carcinoid tumor in lung

Hi @kristin3. With the information that you had at the time, you made the best decision that you could make. Some doctors, even with late-stage cancers, will surgically remove primary tumor area, for fear that the cancer will present in the same area again in the future.
Does your clinic/hospital offer a patient portal, or a way to see the radiology reports? I'm able to read my CT reports before seeing my doctor, allowing me to formulate questions for him. There are often things mentioned by the reading radiologist, that my oncologist doesn't see as significant. This gives us a chance to talk about those things and for me to gain clarity.
Do you know yet if they able to biopsy the new nodules? What are the next steps?

Hi @kristin3, I have over 50 typical carcinoid tumors/DIPNECH across both lungs. Because I have so many, they did not consider a lobectomy, but they did want to get rid of the largest tumor 2.6 cm to reduce risk of metastasis. They sent me to an interventional radiologist at UCLA who used microwave tumor ablation to destroy the largest tumor 2 years ago. It worked. He told me we will do it again on any tumors that reach 2 cm. Most are about 1 cm right now. He doesn't feel we need to remove all of them and told me he and I will be partners for a long time as these are slow growing -- more of a chronic condition. You might ask your doctors about microwave ablation if they suggest removing additional tumors.

MICROWAVE ABLATION: Invasive with needles like a biospy, but non-surgical. It took 2 hours while I was awake and didn't really hurt. Just hard to lie face down without moving for 2 hours on CT table because they had to send me in and out of the CT scanner 25 times to check the location of the ablation needles. Had to be sure they were properly placed before frying that tumor.

Like Lisa mentioned above, I also read my radiology reports through the patient portal prior to appointments and have my questions ready especially about incidental findings. I love to ask my interventional radiologist when we talk after periodic scans because he has the expertise to look at the image right in front of him, see if he agrees with the radiologist who wrote the report, and even compare what he sees to my previous scans to see if it was something there all along and just never mentioned before. He's so patient and nice. His NP told me people come from all over the country to see him. If your doctors want to talk to him about microwave ablation, his name is Scott Genshaft MD, Interventional Radiologist, UCLA. I hope this helps.

Do you know what type of carcinoid you had removed? Typical or atypical?

Thank you so much. My carcinoid was a typical. and 4.7cm. I was upset because they never mention the others on any previous CT scans until after my lobectomy.

I am seeing my Oncologist in 2 weeks. I see him every 6 months and my Thoracic Oncologist every 6 months with repeat CT scans . Thank you so much for everything.

@kristin3 -- typical carcinoids are the best kind to have. They are the slow growing kind. I understand why you were upset that they didn't mention the other tumors. Are the other ones small? How many? I wonder if you might have DIPNECH also since that causes multiple tumors in both lungs. DIPNECH can be a precursor to carcinoids. I just had my 6 month CT scans and no significant changes in tumor size with any of them. They first discovered mine in 2008 and it took a decade for them to double in size. Good luck with your oncology visits. Again, my oncology team only wants to destroy tumors if they reach 2 cm.

DIPNECH also usually causes respiratory symptoms. Do you have any symptoms such as chronic coughing for no apparent reason and shortness of breath upon exertion? My carcinoids/DIPNECH are treated with octreotide injections to slow growth even more and to treat symptoms. It took my coughing away and reduced shortness of breath. It has been life changing for me.

If you haven't already, check out discussions on neuroendocrine cancer for more info. I posted an informational video overview for that.