Benign carcinoid tumor in bronchi tube

He is a cancer specialist who told me he knew all about carcinoid tumors. He never mentioned them as "NETS" and I had never seen it in all my reading about this type of lung cancer.
I had a problem with seeing the post-op X-ray stating it was done for a benign tumor. That made no sense to me.
When I asked about it, he said it had to be listed that way for insurance to pay. To my way of thinking, that is backwards
First off, I was told to have surgery because the tumor had started growing. I just don't understand why it would be listed as benign. He had done a biopsy, so he should have known at that time. All he said was the biopsy showed it was cancer.

@nannybb I just copied this from Mayo's website:

Carcinoid tumors are a type of slow-growing cancer that can arise in several places throughout your body. Carcinoid tumors, which are one subset of tumors called neuroendocrine tumors, usually begin in the digestive tract (stomach, appendix, small intestine, colon, rectum) or in the lungs.

Maybe you want to consider getting a second opinion. I agree with you that your process with this doctor is rather unusual.

@nannybb
PET scans are much more sensitive than X-rays. The PET scan would likely be where they saw the other tumors (or CT scan) but a PET scan looks at the amount of glucose each tumor is using as cancerous cells use more glucose.

@nannybb my pet scan came back clear no other tumors or anything suspicious just the tumor In my bronchi tube it's so confusing a lung doctor rang me today told me there's strong evidence it's benign typical carcinoid and that once it's removed I won't need future treatment like chemo or anything like that just need regular scan to keep an eye for recurrance

Sorry the removal was incomplete. My suggestion is ask (insist) to see a NET specialist for a second opinion because a lot of doctors, even lung specialists, are not very familiar with Neuroendocrine tumors (NETs). I have many typical carcinoids in all lobes and it is a rare form of cancer (1% of lung cancer cases), but don’t let that scare you. It’s very, very slow growing. It’s typical to have one tumor and remove the lobe with the tumor for a one and done surgery and then just monitor you with CT scans for 10 years. You’ll find many people on this message board that have had a lobe with typical carcinoid removed and that was the last of it. Sorry you have to go through this but you’ll be okay. Blessings to you.

@californiazebra Interesting, because someone else on here said carcinoid tumors do not light up well. After the PET, my doctor confirmed all was well. So I have absolutely no idea. I'm going to research some more. Your answer sounds very plausible. Thank you very much.

@tomrennie I saw the surgeon today, and he now thinks because I have a small ribcage, they most likely did nerve damage taking the tumor out. He wants me to continue the acupuncture and will reevaluate in 4 weeks. If I am still in pain, he wants to give me a cortisone shot with something to numb the area. I have medical background and really did quite a bit of research before the surgery....but thank you for looking it up as well. It is very rare, and was also rare in my case as far as the location. It is usually a gut cancer and if in the lungs, would be in the upper lobes. I don't smoke. I thought if I got anything, it would be breast cancer that runs in my family. It is also somewhat rare, as it presents on the outside of the breast on the nipple as a sore. Thank you again. I'm still pondering the 2nd opinion.

@tomrennie
Dogs are great for making you stay on track. I had 3 dogs in a condo with no yard so we walked several times a day. No dogs for 3 years now so it takes more self-discipline when I’m tired. Now I take my good camera with me to photograph the wildlife.

@jessie1990
Recurrence for typical carcinoid is unlikely so once you recover from surgery you can get back to enjoying a long life with your kiddies. 😊