Welcome to the NETs Group! Come say hi.

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?

My experience over the 22 months I’ve been getting the injections is that they determine the next MRI based on the the results from the previous one, I’ve gone 5 months between them down to 3 months.

Sophiarose, the radiologist and doctors want most of the Octreotide or Lanriotide out of your system so the at least 3 weeks after your last shot is preferred.
The way the scheduling worked for my next Dotatate scan is I'll get the scan on Jan 8th and have my next shot on the 9th. Your doctor decides how often to do them - some have them done every 3 months, some every 6. So the radiology department where you'll have yours done should ask you when was your last injection, and your doctor will determine how often to do them.
Good luck.