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Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)Comment receiving replies
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?
Replies to "Hi @breck You’ve been through a lot. Sorry to hear they did not get it all...."
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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.