Neuroendocrine tumor: What tests are used for diagnosis?
I had chromograinin A test done which was very high and 5-HIAA been waiting for results for over 2 weeks, I have a lot of pain 1” above my belly button, pain in back off and on, stool not normal, flushing in face, heart racing. I had ct scan and mri and only thing came back as adrenal gland left side thickening. Last year this happen to me after I had a colonoscopy but then symptoms went away and I just had another colonoscopy 8 weeks ago and my symptoms started up again. Just read that anesthesia can bring on a crisis. This year I had ct scan of lung, abdomen and pelvis, mri and they came back ok, except for adrenal gland thickening. I have all the symptoms. Is there another scan or test I should have? Please advise. Thank you
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Thank you! I still have pain, but again don't know which condition is causing most of it. Have abdominal pain with sweating and nausea every morning, then subsides.
My 5-hiatal test came back 5.8 normal range. My symptoms getting worse, tomorrow I’m taking the capsule test, where they take 1000 pics to see my small intestine.
When I found out I had Neuroendocrine pancreas cancer all my blood work was normal. They should do an MRI to see what is going on with you. That is how they found mine and then did a biopsy of the lesion to type of cancer. . They found out I had Neuroendocrine / Acinar which is very rare and only found in 1% of pancreas cancers. Sending Prayers 🙏🏻🙏🏻🙏🏻
@terlato I was also diagnosed with POTS my recent emergency laparoscopy showed intestines adhesions and more than DIE II stuff in cervix and uterus bad cells… I’m scared that everything is being overshadowed cuz I had neuroendocrine tumor of my rectum 2019 and they say that my issues are DIE II (stage 4 endometriosis) and hemorrhoids. But those things look and feel bad maybe adenomyosis but no investigation is being made in those structures and nobody took biopsies of the tissue strangling my bowels or see under the omentum… my CA 19.9 been high, chromogranin A and D dimers Cardiolipin and more… bone scan more “degenerative changes not definitive focci” that wasn’t there and I’m still waiting for another scan but don’t know what to get I really wish I could get MRI PET they have fried me down here at Kissimmee I’m the local’s doctors and ERs.
I had an mri and that came back normal.
My blood work came back fine the MRI showed the cancer.
Thank you. Still have pain with symptoms. Going to GI doctor today and hopefully my referral for Endocrinologist will be approved. Still waiting for the urine test results. This is so frustrating. It seems there aren't many doctors in Las Vegas that have dealt with this , so they are all confused and don't know what to do. In the meantime, I am the one dealing with all this. I just wish I could have had made an appointment with the Mayo Clinic in Arizona. Have to look into other institutes that deal with this in California. Thank goodness I have a wonderful Neurologist and Cardiologist who are doing their best to help. They are starting the paperwork for me to go to UCLA, but unfortunately that takes months to get approved! Wish me luck today with the GI doctor!
I pray all goes well for you. It is so frustrating. Years back I had cervical cancer and had a stroke I was 42 stroke, 43 cancer. Also had terrible hemorrhoids, had surgery, and such bad abdominal pain, that they decided it was my appendix so they took it out. But, before all this no one was listening to me! I had to go to California to get the diagnosis of cervical cancer.
You need to call your insurance company and tell them you are not getting the quality of care and that you need PET scan. I'm sure they can give you some information on how to go about it. I once had an issue and my insurance company helped and I got what I needed.
Please, don't give up and change doctors if you can. Many prayers coming your way.
Sorry for my delayed response back to you as I have been traveling back/forth to Mayo the past two weeks for my follow up appointments. I am so sorry to hear that you are having such pain. For the nausea, it is possible for you to ask your physician for meds that can prevent it? Do you have any additional testing coming up? Please keep us posted. If we can help, please feel free to reach out to us. I have found that on Mayo Connect, we all support one another in our various healthcare journey. While our paths may differ, the goal is the same. Stay encouraged and know that you are being thought of.
Thank you Sherry! I just saw the GI doctor and he has scheduled, endoscope and colonoscopy on 2/9. Still waiting for the 5Hiaa urine test results. He feels I have all the symptoms of a carcinoid tumor. He states, let's start here and if that doesn't show anything we will go further with testing. I'm thankful this doctor is taking my symptoms more serious than my Oncologist! He was very impressed with my Cardiologist who has gone beyond her specialty. Fingers crossed all goes well. And yes, I do have medication for nausea from the Oncologist when I was on Imbruvica. Will keep informed on results.