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

I had 2 typical lung carcinoids diagnosed a little over a year ago. One was in the upper lung and the other the lower. I did 5 rounds of sbrt radiation on them . So far so good! Had ct scans with contrast every 3 months with no evidence of disease and now going to 6 months. I also get monthly sandostatin injections. Thinking of you.

Could you tell me what type of removal you had?

@sun56 I was told that mine was calcified and that’s nothing to worry yet fast forward I’m having acute dyspnea and mild pulmonary hypertension… CT showed one little nodule on right lung and cardiomegaly at the begging but now my heart looks like a deflated ballon… had positive ANA have been begging for biopsies but now their going to do bone biosphere for my iron deficient anemia that they think it’s my menses but I have history of neuroendocrine tumor of rectum and now I’m currently having NON clear margins of CIN3 after 2 surgeries… I’m struggling to breath 😖hope everything goes well with you and get the help you need in timely manner 🙏🏻 Blessings

My primary doctor did hint to it .. because he states that he has been seeing this occur with COVID .. but he still has sent me to see oncologists/ hematologist to view my pet/ ct scan

I had fdg pet / ct scan so far ..and told to wait 12 weeks for next ct .. by pulmonologist and thoracic surgeon.. they informed me they don’t want to do an invasive procedure too soon and it is nothing ..

@sun56

Keep learning about NETs and educating yourself. As you do not yet have a diagnosis, you do have some time to learn as much as you can. Has any blood work or other tests been done to further diagnose NETs?

Here are some tests/scans recommended by the Carcinoid Cancer Foundation for diagnosing and follow up for NETs.
--Diagnosis and Follow-Up Tests
https://www.carcinoid.org/for-patients/diagnosis/diagnosis-and-follow-up-tests/
On the Carcinoid Cancer Foundation website, you can view videos of doctors talking about this diagnosis. Some you will find are on the staff of Mayo Clinic.

You are wise to not focus too much on this right now. Has it been suggested that this might possibly be a Long COVID problem?

Do you mind sharing what symptoms were you experiencing?

In ‘07 I had a bronchial Carcinoid tumor removed. It is very slow growing but when my symptoms became more frequent, they surgically removed. Haven’t had an issue in my lungs since.

I became aware of the nodule in February 2023 after CT scan due to COVID .I was told that after comparing to older ct scans it was there but smaller at 4mm . I wasn’t aware. I had a pet / ct scan which showed some low activity 1.8 in lung area .. was told ct scan in 12 weeks .
But prior to this I had been experiencing rapid heartbeat, hot flash .. intense anxiety… especially after COVID but prior also it started 2 years ago . I have hypothyroidism but the levels were always good. Kept feeling the same feelings off and on..I always had pvc / pac but they became more intense along with night sweats ..and day sweats (suddenly) then over then repeated..thank you for the list of doctors..made an online request for appointment ..any additional suggestions will be helpful and support ..trying to not focus on it too much cause I don’t have definitive diagnosis just watch / wait and suspicious of carcinoid

Yes 2nd opinion says it mimics a lung carcinoid (solid round nodule / slow growth)

Hello @sun56 and welcome to the NETs discussion on Mayo Clinic Connect. I can understand what you mean when you say that you are scared. Am I correct in my understanding that it has been suggested that this is a lung carcinoid?

If so, we have a discussion group on Connect where you can meet others who have lung carcinoids. Here is the link to that discussion group,
https://connect.mayoclinic.org/discussion/typical-carcinoid-tumor-in-lungs/
As you read the posts in this discussion, feel free to ask questions or make comments by clicking on the "Reply" button.

Are you currently seeing NET specialist? If not, this might be a good first step as you watch and wait. NETs are a rare form of cancer and general oncologists are not always well-trained in diagnosing and treating NETs. If you would like to be seen at a Mayo Clinic facility, there are NET specialists at all three campuses, Rochester, MN, Jacksonville, FL and Phoenix, AZ. Here is a link you can use to see about an appointment,
http://mayocl.in/1mtmR63
If you are not able to be seen at Mayo Clinic, here is a list of NET specialists from the Carcinoid Cancer Foundation,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
If you are comfortable sharing more, were you having symptoms that led to the diagnosis of NETs?