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Anyone living long-term with DIPNECH on lungs?

Neuroendocrine Tumors (NETs) | Last Active: Nov 20 5:25pm | Replies (30)
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@tammyv615

Hi @californiazebra
This tumor that was ablated was the only one that the dotatate pet ‘lit’ up and biopsied as a typical carcinoid with bronchoscope. I have many small tumors with the DIPNECH, and the plan going forward is CT to watch those for growth.
Where did you have your ablation? Mine was done at Mayo in Jacksonville.

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Replies to "Hi @californiazebra This tumor that was ablated was the only one that the dotatate pet ‘lit’..."
Zebra | @californiazebra | May 19 7:49pm

@tammyv615

Good plan. I had my tumor ablation at UCLA. They have a NETs multidisciplinary team in place as I’m sure Mayo Jacksonville does. I went with UCLA because I was already seeing a local oncologist who is part of the UCLA system for my breast cancer and wanted to stay in the same system for ease. The NETs team orders the octreotide injections but I receive them monthly at my local breast oncology office for convenience. It saves me from a 4 hour round trip to UCLA in traffic. Happy about that.

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