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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
Hi Stevestenberg31
Your detail was very helpful and I am at a crossroads right now. I discovered my NETs on 03/24 by electing to have a full body MRI (no symptoms of anything at the time) and was told after every imaginable test that it was slow-growing. I am also in a Clinical Trial for Nets and my specialists are part of the NET group. 2 months after the last PET scan, I was rushed to the ER on 08/10 in immense pain and could hardly walk etc. They took more tests at the hospital and found multiple lesions in my Mets liver (originating in my SI) had grown significantly. I was sent home with a prescription for Morphine. I pushed for Lanreotide (Somatuline) quicker and just heard from my Oncologist on 08/25 that I would hear from the 'Surgical Liver Team' in 3 weeks and then it would take time if they would be operating.
My concern has always been the 'waiting'. Told it was slow growing and now it's not, told they have to monitor the drug first (for 3 months), but I am concerned about it spreading to my lymph or other organs. Any suggestions?
Replies to "Hi Stevestenberg31 Your detail was very helpful and I am at a crossroads right now. I..."
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.
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Wow, hang in there. My situation was that i had a blockage caused by the SINET. I went into the ER and requested an MRI or CTScan w/ dye. B/c my bowels were blocked they did the surgery the next day. Maybe your pain is from a blockage? I suspect i had a "partial" blockage for months. Have you lost weight? Can you not eat very much? If yes the situation might be similar. I too have NETs in my liver but the bloating and pain was from the SI blockage.