So confused about biopsy of a lung nodule that grew: What's next?

So sorry for the mistakes but so nervous I wish I could post the report here but don't know how

I was given the diagnosis of a carcinoid tumor and operated on in July of this year. I saw a pulmonary specialist, and a cancer surgeon before making this decision. Both agreed I should have surgery. I have been in terrible pain for the past 5 month, unable to work. I have resorted to acupuncture, which has helped in some places to some degree. A person on this forum, suggested I go for a second opinion to an actual NETs specialist. Wish I had done this pre-op, and not post-op. She was kind enough to even steer me to a specific doctor. I saw this doctor yesterday. He did a brief physical, asked questions, and went back to his office to look at my chart notes I had requested from the hospital. The upshot....he told me I had been misdirected in treatment. I asked him point blank if he would have operated. He said, "I will not lie to you. No, I would have watched and monitored your tumor". Reading my records, he felt the pathologist report of the biopsy noted it was a tumorette. (Which denotes size) He explained what he thought the pain was coming from (nerve compression) what to do going forward (possible freezing of those nerves involved) and a new therapy which involves shots of a hormonal nature specific for Carcinoid tumors. Upshot: Have a specialist in your specific cancer review all available information. Go for 2nd and maybe even 3rd opinions. Make sure you have ALL your questions answered BEFORE any invasive procedure. I now have to have 2 more procedures to just get rid of the pain.

hi @indalee1959 - if you can take a screenshot of the report, you can add it to your post, or as a new comment. it's good you had the biopsy done. was it a needle biopsy? when do your meet with your doctor to go over the results?

@mamajite

I have been trying to do a screen shot, never did one before, I bring up the biopsy report than try to post it, pressed from clip board but nothing.
I have a oncol I have LGL leukemia and he has been watching this nodule with scans. He said he doubts very much it is cancer. I was in the hospital for abdominal pain for some reason the E R Dr. was my Dr. after I was admitted, next I knew I had a virtual visit with a pulmonologist and a date for the biopsy.
I have a friend who is a retired oncology nurse I sent her the report and she said the first part is why the biopsy is being done, the other 2 sections are telling me no malignancy. if you can direct me to do the screen shot I would appreciate that, I have the s s up,

Hello @indalee1959, Mayo Clinic Connect is made up of patients facing similar conditions and treatments. We are not clinicians and cannot offer medical advice. You don't need to post a copy of the report. From the text you added, 'no malignancy', sounds very reassuring! Most lung nodules are not cancer. They are usually infection, inflammation, fungus, etc. I hope you can speak with your doctor soon.
Did you just have the biopsy today? How are you feeling?
Do you have an appointment set up with your oncologist?

I had the biopsy done Nov. 24 th, got the report yesterday. I actually see the Dr. tomorrow he will go over the report with me, I am pretty sure I will need follow ups. The nodule was 1.4 by 1.1 have other smaller ones in both lungs,

@indalee1959, I'm glad that your appointment is coming up. Waiting on information/clarification is tough.
Please come back and let us know what you find out. Hugs.

I Just saw there was more info on the report and it says positive for TTF-1, when I did a search it is a cancer marker, Negative for Insm1 p40. How can it be negative for malignancy and have a cancer marker? Will let you know you the outcome. I have a 40 minuets appointment late afternoon/

hi @indalee1959 - the TTF-1 test is used to figure out if the nodule/tumor originated in the lung or is a metastasis from elsewhere. mine was also positive and I have adenocarcinoma. do you have rheumatoid arthritis by chance? I read that about 1/3 of LGL leukemia patients also have RA, which can cause pulmonary nodules. I'm glad you are following up on everything with your doctor and will know more soon. the unknowns are always the hardest! let us know what your oncologist says.