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NET symptoms despite follow-up lab work ok
Neuroendocrine Tumors (NETs) | Last Active: Dec 21, 2023 | Replies (42)Comment receiving replies
I’m so sorry you’re having all these problems! My NET was found in my cecum during a colonoscopy that I requested due to diarrhea for 1 year. My PCP kept telling me all my blood work and fecal samples showed there was nothing wrong. The NET was removed through colonoscopy/endoscopy and I had a CT scan that showed all clear, but I did not feel comfortable with that. My oncologist would not order a PET scan and said it was not needed but I begged him for days until he finally ordered it. The PET scan showed that it had spread to lymph nodes, liver and possibly heart. I will have an MRI on July 30 to see what is going on in my heart. My diarrhea has improved, but it is not completely gone. I don’t want to scare you, but please insist on a PET scan to find out what is going on, and find a NET specialist right away. I don’t think a general oncologist has the knowledge to effectively treat NETs. I will pray for you and yours to get to the bottom of this and that your symptoms will improve. Please keep us informed! Big hug 🤗
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From @helloitsme:
"My oncologist would not order a PET scan and said it was not needed but I begged him for days until he finally ordered it. The PET scan showed that it had spread to lymph nodes, liver and possibly heart. "
Thank you so much for this comment, @helloitsme. It is hard to remember through all the gaslighting that we patients do actually know our own bodies best and should trust our intuition, because that trust can be the difference between life and death.
Plus, we've usually done - oh - 5 years of intensive reading on imaging studies and what works for which conditions, (in my case) how being obese affects imaging, which lab results are going to be the most effective, and - though I still have trouble believing this one, even having experienced it - how to properly interpret them.
Hang in there. Sending you positive thoughts and healing energy. 🤗