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Replies to "Yes, we are seeing the only net specialist in town at UCSD. The Dr. said no..."
Neuroendocrine Tumors (NETs) | Last Active: 15 hours ago | Replies (14)
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Yes, we are seeing the only net specialist in town at UCSD. The Dr. said no surgery for the pancreas. However, I don't why. Or of he meant not right now. I feel like they only give you bits of information at a time. Like not to overwhelm you. But we have a high schooler at home to enjoy as much as possible. I like to know what might be ahead of us.
Replies to "Yes, we are seeing the only net specialist in town at UCSD. The Dr. said no..."
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I totally sympathize with your situation. Its frustrating to not have the answers you need. But it is important for you to understand what is being recommended or not recommended so you need to ask these questions and insist on an answer.
Also, it's very important to educate yourself as much as possible so that you feel comfortable if what the doctors - even a specialist- tells you makes sense or not. Had we relied on a top net specialists opinion of no options for my husband 17 years ago he would not be alive today.
Fortunately there are many net specialists in California. That is where my husband's journey began and we saw many of them. A second opinion may be helpful for you. Cedar Sinai in LA has an excellent net team and an excellent net surgeon, Nicholas Nissen. Other great options are City of Hope, UCLA and Stanford.
Many years ago a well renowned net surgeon referred to surgery and liver directed therapies like y90 in this way. You're Cinderella and it's 11:55 pm. You tackle what you can of the tumors and you've set the clock back to 7 pm.