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

Discussion

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
@sun56

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

Jump to this post

Replies to "I became aware of the nodule in February 2023 after CT scan due to COVID .I..."
Teresa, Volunteer Mentor | @hopeful33250 | Mar 25, 2023

@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?

VIEW AND REPLY
AC | @aclanton | May 27 11:21pm

Hi. I am in a similar situation but am scheduled for a biopsy in a few weeks. Mine is 2.3 cm and appears to be a carcinoid in both a pet scan and a ct angiogram. The thoracic surgeon clearly thinks it’s carcinoid and is prepared to do surgery pending the biopsy results, but the pulmonologist says multiple types of infections can be mistaken for carcinoid. It’s so hard to wait, for sure!

VIEW AND REPLY