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Lung nodule could be slow growing carcinoid: Watch and wait is scary
Neuroendocrine Tumors (NETs) | Last Active: May 30 4:55pm | Replies (40)Comment receiving replies
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?
Replies to "Hello @sun56 and welcome to the NETs discussion on Mayo Clinic Connect. I can understand what..."
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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