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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
How old are you? Why is surgery not an option ? Im 55yr old male. I was diagnosed with the same January 2023. I started Somatuline 2/15. I went to the ER 4/20 bloated and in pain. B/c the SINET was blocking my SI I had SI resection, 2.5cm NET, the GB, and 8 lymphnodes removed. I feel great now and gained 15lbs since. Im exercising daily etc.. The NETs in the liver haven't changed, im being told after 2 subsequent MRIs. Hang in there🙏.
Replies to "How old are you? Why is surgery not an option ? Im 55yr old male. I..."
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?
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I am a senior and I might benefit from Cryoablation, but my NET surgeon said that normal surgery can possibly spread the cancers as they are connected to my lymph nodes etc. As we are all different and many of the NETs are in hiding, this is like war where a strategy is so very important. I am happy for you that you are having success.