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Neuroendocrine Tumors (NETs) | Last Active: 1 day ago | Replies (410)Comment receiving replies
Hi Lenora, my husband has been diagnosed with Neuroendocrine cancer and we knew nothing about it? He has a spot on the tail of his pancreas and is many lesions on his liver, also the lymph nodes are involved in his stomach. He also has some bulged disc's in his back which is where the liver lesions were discovered. We sent him for an mRI for his back. He has had 7 back surgeries, he is ex-military. He is being treated with Sandostatin once a month. His pain levels are out of control? Now it seems to be going down his hip and leg? I don't know if it from the back or the cancer? His pain is worse than it was with back surgeries? I am speaking to his Dr. on zoom chat Tues. he had a Copper? PET scan? Maybe I do not know clinical terms but that is what we were told. We are going to Moffitt in Tampa, does anyone have any advice?
Replies to "Hi Lenora, my husband has been diagnosed with Neuroendocrine cancer and we knew nothing about it?..."
Hi, thanks for your reply to my post. So sorry to hear that your husband's
pain is so severe. Perhaps the doctors can come up with a more effective treatment plan for pain control. It sounds as if he went to hospital for the back problem and they discovered NETs. This seems to be a common occurrence. When you speak with the doctor tomorrow, there are some things you can ask about. Find out if they know the primary site for the NETs, the liver or the pancreas. Did he have a Gallium 68 pet scan which is the best to find where NETs are and how many? Is your doctor someone who specializes in NETs? Are they planning other treatments besides the Sandostatin? Best of luck. Hope you get the information you need to go forward.
Lenora
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Sorry to hear that, you are going to a good place for medical care, does he has his thyroid checked?, I have that type of cancer and sometimes with medications the tumors get smaller, good luck!