← Return to Neuroendocrine tumor in small bowel with lymph nodes involved

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I was diagnosed with carcinoid in March 2018 when I, too, had a blockage in my small intestine. Although that was removed along with 10” of my intestine, there are quite a few scattered throughout my body that could not be. In April that year I started on monthly injections of Sandostatin. However, in July 2019 I had another blockage, this time in my large intestine so they removed 11”. In March 2020 I went to Mayo in Phoenix for a consult for PRRT treatment. But the pandemic hit and I waited until April 2021 to start the treatment. In that time the lesions had grown. I started the treatment that month, completing it last October. A PET CT in March this year showed everything is “stable”. I continue the monthly injections, watch what I eat, and exercise 4-5 days a week. I would encourage anyone with a new diagnosis to do your own research about your diagnosis, and find what works for you to keep you healthy mentally and physically. NETS are slow growing. They are rare so it’s important to find doctors who have knowledge of and experience dealing with them.

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Replies to "I was diagnosed with carcinoid in March 2018 when I, too, had a blockage in my..."

Hello @phyllisden and welcome to Connect. I appreciate you sharing your journey with NETs with our discussion group. You have made some good decisions such as realizing the importance of finding good doctors who have experience in this rare disorder. You obviously done your homework and you have some good results.

Will you share as you continue to pursue treatment?