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Sep 24, 2019 · I am not ok with this at all in Neuroendocrine Tumors (NETs)

I'm so sorry Andre1221. Could you clarify something for me? When you said that there is no comparison to Mayo in JAX, were you meaning that Mayo was not investigative enough? That's so disappointing. I've been to JAX to accompany my child for her spinal treatment, but at Nemours, not Mayo. I just heard so many good things about Mayo, I am sad that there was no interdisciplinary approach for you. Do you think it was that specific doctor, or that someone dropped the ball, or that it was a systemic problem in JAX?

Sep 24, 2019 · I am not ok with this at all in Neuroendocrine Tumors (NETs)

I'm so sorry that you were met with such dismissive behavior! Thank you for the kind advice. I was already thinking about moving down toward Tampa, which isn't too far from Shands, which has a good reputation. Mayo is 7 hours away, and I feel your pain with the plane rides – my daughter has repeatedly had to go to JAX for her scoliosis management.
Thank you again!

Sep 24, 2019 · I am not ok with this at all in Neuroendocrine Tumors (NETs)

Thank you for your kind words. I couldn't tell if my first msg posted, so that's why I wrote another one. Thanks for your help. Yes, freaked out is a good term. I did talk to the office about removing those diagnoses – the most they would do is move the breast cancer over to "inactive problems." Yes, I made an appointment with GI for thursday. Thanks so much!

Sep 24, 2019 · I am not ok with this at all in Neuroendocrine Tumors (NETs)

I’ve had test after test for vague symptoms of profound fatigue, trouble swallowing, weight loss, and on and on. The last five years I’ve seen gastro, rheum, ENT, neuro, all who shrug their shoulders and tell me I’m fine. Everything comes back negative. I have been saying, « I am NOT fine. » My NP ran a few extra tests this month and 24 hour urine, messaged me to repeat the tests (chromogranin A and 5HIAA) because they were out of range. I’d never heard of these before. Second test the Chromo A had come down considerably, but still 5 points out of range. I don’t know the results of the other test.
So I log on the patient portal in the middle of the night and find a message from a technician that says, « The NP wants you to go to GI because of a possible carcinoid tumor. »
I’m so angry. This is the third time I just happened to see something of gravity, not because anyone TOLD me, but because I happened to come across it. The first two, I found while looking through the pt portal and under « problems » it said, « breast cancer. »
Nobody told me that! Later, I found under « problems » “múltiple sclerosis. » Guess what- I never had either one of those diagnoses. I repeatedly asked them to remove them because I couldn’t get life insurance, but they are still in my chart. I don’t know what to believe now. I’m furious that I keep finding diagnoses, go to the doctor to ask, and they say they just put it in there to get a test paid for. UGHH

Sep 24, 2019 · I am not ok with this at all in Neuroendocrine Tumors (NETs)

Hi, I’m 48 years old. I’ve been seeing doctors for years because of profound fatigue, headaches, trouble swallowing and on and on. Basically have been told I’m fine, I just need to eat this or do that.
My primary care nurse ordered a couple extra labs this month, chromogranin A and 5HIAA. I got a message saying they were out of range, I repeated, the 2nd chromogranin A came down a lot, but was still 5 points out of range. The nurse didn’t say much but referred me to GI. Tonight I logged on to the patient portal and a technician left a msg for me saying that the nurse really wants me to make an appointment with gastro because of a « possible carcinoid tumor. » Nice way to find out. At 2AM in my messages. I’m a little freaked out.