I am not ok with this at all

Posted by freeangel @freeangel, Tue, Sep 24 2:01am

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.

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

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@freeangel, welcome to Connect. You'll notice that I moved your 2 messages into one discussion thread, so members of the group can see the whole story.

I can imagine that you are freaked out. That is no way to find out about a possible medical problem. Have you considered contacting the office of patient experience at your hospital to get the incorrect information removed from your patient record? About the possible carcinoid tumor, will you be making an appointment today with your gastroenterologist?

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Hello @freeangel and welcome to Connect. I can't imagine what it would be like to read about possible diagnoses on your patient portal before you were told in person or at least by phone.

I would encourage you, however, to follow up on with a gastroenterologist about the elevated chromogranin A and 5HIAA numbers. I have had three surgeries for carcinoid tumors and it is important to deal with them at an early stage.

In addition to the symptoms you have mentioned, have you had any diarrhea or hot flashes (that primarily affect your face)?

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Dear @freeangel, I read your post with a growing dread. I was first diagnosed with a rectal carcinoid during my first colonoscopy in 2000. It was removed during the colonoscopy. It was small and had not produced symptoms. My gastro, internist and oncologist all told me the problem was gone, don’t worry and a carcinoid isn’t really cancer anyway. After 5 years of worrying and being rebuffed, I followed my instincts and found a specialist — on my own — a plane ride away from my Texas home. He refuted everything my local doctors had told me. There are more chapters to my story, but my point is: Find an experienced specialist and see him/her asap. Almost 20 years later, those people exist all over the U.S. If you cannot quickly see the first specialist you call, hang up and call another. You have suffered too much emotionally, if not health-wise. The kind support people here can direct you to sites where specialists are listed. I have learned to research for myself by reading everything from newspaper articles to articles in medical journals — to understand what docs tell me, to ask questions, to challenge, if necessary. I know you can find someone who knows what tests to order and is familiar with paths forward, if a carcinoid diagnosis is, in fact, accurate. Use your understandable anger to help yourself get answers, to propel yourself forward toward the best help possible.

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Hello @mgreene and thank you for the encouraging and informative post to @freeangel. Personal experiences, like yours, speak volumes. You are right that many doctors (even gastroenterologists) will diminish the idea that carcinoid is cancer. Carcinoids ARE a rare form of cancer.

For the benefit of @freeangel and others, here is a link to the website for The Carcinoid Cancer Foundation. Here you can find lots of information about carcinoids and also a list of doctors (around the world) who specialize in dealing with this rare disorder,
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

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@colleenyoung

@freeangel, welcome to Connect. You'll notice that I moved your 2 messages into one discussion thread, so members of the group can see the whole story.

I can imagine that you are freaked out. That is no way to find out about a possible medical problem. Have you considered contacting the office of patient experience at your hospital to get the incorrect information removed from your patient record? About the possible carcinoid tumor, will you be making an appointment today with your gastroenterologist?

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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!

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@mgreene

Dear @freeangel, I read your post with a growing dread. I was first diagnosed with a rectal carcinoid during my first colonoscopy in 2000. It was removed during the colonoscopy. It was small and had not produced symptoms. My gastro, internist and oncologist all told me the problem was gone, don’t worry and a carcinoid isn’t really cancer anyway. After 5 years of worrying and being rebuffed, I followed my instincts and found a specialist — on my own — a plane ride away from my Texas home. He refuted everything my local doctors had told me. There are more chapters to my story, but my point is: Find an experienced specialist and see him/her asap. Almost 20 years later, those people exist all over the U.S. If you cannot quickly see the first specialist you call, hang up and call another. You have suffered too much emotionally, if not health-wise. The kind support people here can direct you to sites where specialists are listed. I have learned to research for myself by reading everything from newspaper articles to articles in medical journals — to understand what docs tell me, to ask questions, to challenge, if necessary. I know you can find someone who knows what tests to order and is familiar with paths forward, if a carcinoid diagnosis is, in fact, accurate. Use your understandable anger to help yourself get answers, to propel yourself forward toward the best help possible.

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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!

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Good afternoon. This whole ordeal started with me fourteen years ago and gradually worsened. My first indicator was chronic headaches that would last 30 seconds to 3 days. My local pcp referred me to Shands at UF. After 3 years of misdiagnosis, the Chief of their Neurology Department told me that they couldn’t fix me. He cited that I didn’t fit in any headache family, that I was somewhere between cluster and migraine. He was polite and professional but…..

When Mayo Jax started treating me, their NET Specialist said the reason for the obscure headaches is the Serotonin being dumped during carcinoid attacks and/or crisis. Obviously, a lot can change from fourteen years ago. Unfortunately, I went to them thinking as reputable that they are, I would have a good chance. Sadly, they just focused on my headache and never considered anything else (yes, looking back there were several signs and symptoms pointing to this illness).

I am also a patient at Moffitt. They did my second opinion in August 2018. I was happy with them but comparing them to Mayo Clinic isn’t even close for me. No disrespect to anyone currently there or considering them, just my experience and opinion.

Hope you get some relief and results. If I can help, please reach out.

Take care, André

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@andre1221

Good afternoon. This whole ordeal started with me fourteen years ago and gradually worsened. My first indicator was chronic headaches that would last 30 seconds to 3 days. My local pcp referred me to Shands at UF. After 3 years of misdiagnosis, the Chief of their Neurology Department told me that they couldn’t fix me. He cited that I didn’t fit in any headache family, that I was somewhere between cluster and migraine. He was polite and professional but…..

When Mayo Jax started treating me, their NET Specialist said the reason for the obscure headaches is the Serotonin being dumped during carcinoid attacks and/or crisis. Obviously, a lot can change from fourteen years ago. Unfortunately, I went to them thinking as reputable that they are, I would have a good chance. Sadly, they just focused on my headache and never considered anything else (yes, looking back there were several signs and symptoms pointing to this illness).

I am also a patient at Moffitt. They did my second opinion in August 2018. I was happy with them but comparing them to Mayo Clinic isn’t even close for me. No disrespect to anyone currently there or considering them, just my experience and opinion.

Hope you get some relief and results. If I can help, please reach out.

Take care, André

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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?

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I’m sorry if there was a misunderstanding. Moffitt and MD Anderson in Houston refused to see me initially because I had “no evidence of disease”. It was Mayo who picked up the ball and ran. Moffitt agreed to see me, only after Mayo’s diagnosis. I can’t even begin to praise Mayo enough for all that they have done. The rumors are true, they are the Disney World of the medical industry. I’m so, so thankful and proud to call myself a Mayo Clinic patient. Please consider them for any of your medical needs, especially to manage NETs.

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I totally agree! Dr. Starr and Mayo has been life changing and wonderful experience! I felt so lost and insignificant until I found Mayo and my NET Care team! It's funny you called it Disney World because that is exactly what I compared it to the first time my husband and I walked through the doors! We travel from Charleston, SC and it is so worth it❣🦓

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I also was 48 when first diagnosed with NETs. My primary care Dr. totally missed the ball on my case. After years of various health problems including a diagnosis of Hashimotos thyroiditis I was sent for a colonoscopy and upper GI. Both tests came back normal but the smart gastroenterologist sent me for capsule endoscopy which found my tumor. Had surgery and was diagnosed officially with stage 4 NETs. Was in lymph nodes and liver. Six years later I have spot on my liver and doctors keep sending me for MRI liver biopsy etc.. Have an appointment with new oncologist this month. He's filling in until our town finds a new oncologist. No one seems to have an extensive knowledge of nets in my area. We will see what happens.

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@feebee

I also was 48 when first diagnosed with NETs. My primary care Dr. totally missed the ball on my case. After years of various health problems including a diagnosis of Hashimotos thyroiditis I was sent for a colonoscopy and upper GI. Both tests came back normal but the smart gastroenterologist sent me for capsule endoscopy which found my tumor. Had surgery and was diagnosed officially with stage 4 NETs. Was in lymph nodes and liver. Six years later I have spot on my liver and doctors keep sending me for MRI liver biopsy etc.. Have an appointment with new oncologist this month. He's filling in until our town finds a new oncologist. No one seems to have an extensive knowledge of nets in my area. We will see what happens.

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@feebee, I wish you the best with your new oncologist. Have you considered traveling to a center that specializes in NETs for a second opinion?

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Yes. I have researched doctors in my own state that specialize in NETS. But it's all about insurance and a Dr. that is in my insurance network.

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Most insurance plans will let you go out of network for a second opinion. You can also build an argument that they don’t resources who are NET specialists. I’d be happy to help you with such an out of network letter

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