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Neuroendocrine Tumors (NETs) | Last Active: Nov 29 1:22pm | Replies (429)

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@breck

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.

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Replies to "Yes, they want to do a needle biopsy. They say there slow growing so they want..."

Hi @breck
Thank you for your response. Sorry this is so scary and you have breathing issues. Also sorry to hear your original care team did some damage.

My tumors are very very slow growing. They were first found on a CT scan 16 years ago and based on symptoms have likely been there at least 30 years. I take octreotide injections that have really helped the chronic coughing and shortness of breath. My case is being managed well by a NETs team at a university hospital near me. I’m glad you’re at Mayo now with a team familiar with lung NETs. My team tells me we’ll be partners for a very long time. An experienced NETs team makes a difference. Prayers for you. ❤️