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New Diagnosis: husband's labs are all indicating NET
Neuroendocrine Tumors (NETs) | Last Active: 14 hours ago | Replies (36)Comment receiving replies
Finding out you may have a net is a hard thing to deal with! Stay positive there are a lot of treatments and tools in the toolbox as my Net specialist told me. I hope you have a multidisciplinary team. If not get one! You didn’t elaborate about symptoms or how this presented you stated high chromagranin A . Does he have symptoms? If the suspected tumor or tumors don't have not have receptors the won’t light up on the PET scan I think 90% have them. It sounds like you have a lot of unknowns at this stage. I am one that studied my disease so I know what may happen down the road. I know everyone is different so always do what’s best for you. I was diagnosed in May 2021 have been through a lot but the team has me stable at this time I am 68 I have Primary Pancreatic Net with inoperable functioning metatastic liver tumors I go to the University Of Michigan Medical Center
Replies to "Finding out you may have a net is a hard thing to deal with! Stay positive..."
Hi,
This is my first post on this site. Just discovered it a few days ago. I was diagnosed with a NET on/in my liver this past November. What a rollercoaster ride. It's actually a metastasis from a NET I had removed in 2008. Thought I was out of the woods back then. Since it's spread it's considered Stage 4. Who is on a multidisciplinary team? Right now I have an oncologist at University of Wisconsin. And I would appreciate some guidance for finding the treatments and tools in the toolbox. Right now my toolbox seems pretty empty. Thank you?
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Thank you! His symptoms started like he was having panic attacks, high BP, headaches, left flank pain. He has lost 110 pounds. MRI and CT showed tumors on both adrenal glands. Our hospital system is partnered with Mayo Clinic.