Anyone have lung NETs lining your pleura?

I have lung nets.... along with 1 Adenocarcinoma. The top right lobe and parts of the lower right lobe was removed with the adenocarcinoma. Ct scan every 6 months to watch the other carcinoid Tumors. They are small. No other treatment until these grow a bit larger

Thank you for the feedback. Hope you now are doing well. We received pathology yesterday and it is atypical. We are waiting to see if it is aggressive or slow growing in order for treatment. Was yours atypical or typical?

Mine are typical. Please keep us posted. Best of luck

I have atypical thymic carcinoids that have grown and spread throughout pleura, and mediastinum. currently causing 2Liters of fluid buildup every 10 days. Treatment of 5 different types of chemo and immunotherapy that has not worked. Where are you being treated?

Im sorry to hear you are going through that. It is actually my brother. He had his lung surgery 2.5 weeks ago. We just received his diagnosis of atypical nets this week by our local hospital. The pathology has been sent to Mayo for a second opinion, but we have not received those results for confirmation. We currently have a referral to The James Cancer Center at Ohio State University Hospital. They have a group that specializes in NETs.

I have lung nets that were dx several years ago and biopsied at that time. I saw the Oncology MD and he wants new biopsy. NETS have gained ground in the lungs and nodule noted at thyroid. He wants a new biopsy done specific for lungs and thyroid. With all the urgency not to biopsy out there due to threat of spread...wondering if I should allow a biopsy.

@lkent
I'm sorry that you have to go through this. While I'm not as well versed in lung nets specifically, it's my understanding that they can be a bit of a different animal than other nets in the pancreas or elsewhere. It is not unusual for mets to have a different ki67 than the primary. This may be why your doctor wants to biopsy it as the information may change the course of treatment. I wish you the best of luck.

@lbowers2
I've heard wonderful things about the James Cancer Centwr and their net program. Your brother will be in excellent hands!

Keep us posted. This could be any of us next

Hi I'm new to this group I also have lung nets in both lungs on the injections every 4 weeks my last scan showed 1 tumor had grown slightly it shook me up a bit..I'm still learning about this type of cancer.I hope your doing well?