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Newly diagnosed - neuroendocrine tumor in intestines
on routine ct scan found a small abdominal mass. wasn't clear where it was originating from . went to gyn oncology. finally decided it wasn't gyn. had mri. was scheduled for surgury but surgeon wanted endodrine to clear me first. she did labs, 24 hr urine and pet scan. some labs and first urine got "screwed up by lab. my tumor has gotte.n much ,much larger. it has been a month since this happened. my surgury has been rescheduled twice. i am scared!!!! i feel like by the time i can have surgury they will tell me "it is to late. i had faith in all my drs seen here but now worried i should have gotten 2nd opinions at the start and now it is to late.
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Just off a virtual call with the doctors. They are putting me on a regimen of monthly Octreotide injections to shrink the tumors and reduce the carcinoid symptoms.
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2 ReactionsGet to a university hospital/teaching hospital. Nets are very slow growing. I have had mine for almost 20 years. They are rare hence the recommendation to a university hospital.
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2 Reactions@tennisfan
I hope that the Octreotide injections are helpful to you in managing the carcinoid symptoms as well as reducing the tumors.
When will you be having your first injection?
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1 ReactionNot scheduled yet, I’m waiting to hear back on the appointment. So many possible side effects.
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1 ReactionI understand you have had neuroendocrine tumors for many years. Were you receiving any treatment prior to Feb 2023 when you started octreotide shots?
I was recently diagnosed with metastatic liver neuroendocrine tumors, well differentiated, grade 2 KI-67 6-8%. I am looking at starting octreotide shots are to watch and wait. Thanks for sharing.