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Laparoscopic Possible Open Surgery Resection - Small Bowel NETS
Neuroendocrine Tumors (NETs) | Last Active: Apr 21 3:05am | Replies (70)Comment receiving replies
Hello @ricki8
I certainly understand your concern and also your wanting answers sooner rather than later. Have you considered getting a second opinion?
I would highly recommend Mayo Clinic. They have NET specialists at all of their three locations. Here is information about obtaining an appointment for a consultation (if it is too far for you to drive, you might consider a virtual appointment). http://mayocl.in/1mtmR63
If a Mayo appointment is not possible, for any reason, here is a list of NET specialist throughout the country.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Once again, a virtual or in-person appointment might put your mind at ease regarding your treatment options.
Are you still having the "intense pain" that you mentioned? Are you able to eat or are you losing weight? These are all important considerations.
Replies to "Hello @ricki8 I certainly understand your concern and also your wanting answers sooner rather than later...."
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That is so kind of you, thanks.
I am in Canada and under a Clinical Trial for NETs with specialists in this field. I called around the world and the original time to get started was about the same. If I left Canada, they would not support me. I only became extra worried when it changed from slow-growing to fast-growing. The intense pain luckily got me in the E.R. where the change was discovered. I seem to be normalized right now with more energy than the last several years. It's so hard to know if I should push my oncologist and the surgical team to incorporate any surgery before they give me the blood work and another CT scan in mid Oct. I was hoping that someone else has a story that I can relate to. I did drop 20 unnecessary lbs., but seem to be holding.