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    Decision Point (Surgery versus systemic medical treatment): Back in 2015 NIH picked up metastasis to peripancreatic lymph node on gallium68 Scan. Subsequent investigation with multiple specialists pointed to further watch and wait. Health was relatively stable until past 2 months. Symptoms have dramatically increased as well as new symptom of highly elevated blood pressure. GA68 past November showed marked SUV uptake in that lymph node but it had remained stable in size until recent MRI has detected doubling in size requiring a new treatment decision. My current NET specialist is Dr. Wolin at Mt.Sinai. He will present findings to tumor board next week and I will need to decide whether to proceed with surgical intervention or Everolimus. I am holding off on PRRT for now because the liver has continued to remain stable.

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    User: ginger50

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    Hi Creede. I also have stage 4 Neuroendocrine cancer. There is a wealth of information on the Carcinoid Foundation website and numerous FB groups for this cancer where you can gain knowledge and the experience of others. I have been living with this cancer since 2012. I am glad to answer any questions. Seek the advice of a NET specialist. Keep copies of all your medical records including pathology and scans etc. this is a cancer where you will need to become your own advocate as much as possible. Your ki67% determines the aggression of the disease. Many patients with well differentiated disease can live several years even at stage 4.

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    User: contrail

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    Procedure or Surgery: Went to Wren Laboratorities in Branford Connecticut to get the Netest blood test done. Very positive experience. Test results will be back in 2 to 3 weeks. I am looking forward to having more information. I remain open about this.