Welcome to the NETs Group! Come say hi.

Interesting I never had any symptoms until I was put on Lanreotide for growth and like you it didn’t work I have find other treatments for that
Thank you
And good luck to you

I have continually gotten my lanreotide and have MRIs with contrast on a regular basis for 3 1/2 years. The lanreotide only helps control symptoms for the functioning gastrinomas I have on my liver and pancreas it never worked in my case to control tumor growth I had other treatments for that.

Yes, they want to do a needle biopsy. They say there slow growing so they want to watch them. I am on oxygen and overweight. Idk if that has anything to do with it. They said that there would be treatment options but less in my case because of my lungs and breathing. But they did set me up for an appointment did you breathing test. To be honest I'm not sure myself. And of course after I leave I have so many questions. The Dr did say he thought it was slow growing. But this was my first time at Mayo. I live in Iowa so my initial surgery I had here where they removed half my lung . But I didn't receive good care and so I want to mayo to get a second opinion and just see if they would take over my care. I'm honestly just so new to this I don't know a lot about it and I don't understand a lot about it it's very scary. I am so sorry you're going through it that's a lot too.

Hi @breck
You’ve been through a lot. Sorry to hear they did not get it all. I also have lung NETs (typical carcinoids) and DIPNECH which is very rare but sometimes a precursor to lung NETs. People with DIPNECH typically have multiple slow growing tumors. I have over 50. When you say you have multiple tumors, I wonder if they have considered DIPNECH in your case? There are only 300 documented cases so most doctors have not even heard of it. It took 12 years for me to get an accurate diagnosis.

When you say you have very big new nodules, I’m wondering how big and why they want to wait for them to get bigger. Is that so they can do a needle biopsy?

Also, do you have any respiratory symptoms such as coughing, mucous, shortness of breath? If so, for how long? Did removing part of your lung cause any respiratory issues?

It should be true for any diagnostics, but always check with your doctor and the radiology department.

Thank you
Is that also true for MRIs with contrast as well
Good luck to you as well

@breck,
Here is a discussion group on Connect that you might find helpful. Here you will meet others with Lung NETs, including @californiazebra and @emilyfaith
https://connect.mayoclinic.org/discussion/describe-your-recovery-from-lung-net-surgery/

You have had quite the introduction to NETs. I'm glad that you are being seen at Mayo. They should provide you with good guidance. The NET specialists at Mayo are extraordinary. This evening, the NETs support group will be meeting via Zoom at 5:30 EST. If you can attend, I think you would enjoy the speaker. After the speaker, the individual members share. There is a lot of support and good information offered in these meetings. If you would like to attend this month's meeting tonight, here is a link with information to register.
https://connect.mayoclinic.org/comment/1165938/
This support group meets on the first Thursday of each month. I hope you can join us!

I had been diagnosed in another hospital and had half had half my lung removed. Thought it was gone but came to Mayo for second opinion and found out it's not they're watching it for 3 months and then I go back and he wants to hold off right now on treatment till it gets bigger. Some of the new nodules are very big and I was positive at the margin where they took out my last tumor which was by my heart I guess in my lung

Hello @breck and welcome to Mayo Connect. I see that this is your first post and that you have NETs in your lungs. Is this a new diagnosis for you? Are you involved with any treatment now?

I look forward to getting to know you. Will you post again?