1. < Neuroendocrine Tumors (NETs)

I am not ok with this at all

Posted by freeangel @freeangel, Sep 24, 2019

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.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

sbcook70 | @sbcook70 | Sep 24, 2019

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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feebee | @feebee | Sep 30, 2019

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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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 2, 2019
In reply to @feebee "I also was 48 when first diagnosed with NETs. My primary care Dr. totally missed the..." + (show)
@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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feebee | @feebee | Oct 2, 2019

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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Tom Wilson | @tomewilson | Oct 2, 2019

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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1 reply
feebee | @feebee | Oct 8, 2019
In reply to @tomewilson "Most insurance plans will let you go out of network for a second opinion. You can..." + (show)
@tomewilson

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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Thank you. I see the new oncologist on the 21st. We'll see how knowledgeable he is about NETs. Then I'll build my case from there.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 9, 2019
In reply to @feebee "Thank you. I see the new oncologist on the 21st. We'll see how knowledgeable he is..." + (show)
@feebee

Thank you. I see the new oncologist on the 21st. We'll see how knowledgeable he is about NETs. Then I'll build my case from there.

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I appreciate your update, @feebee. I look forward to hearing from you after your appointment on the 21st.
Will you provide an update after you see this new oncologist?

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1 reply
feebee | @feebee | Oct 9, 2019
In reply to @hopeful33250 "I appreciate your update, @feebee. I look forward to hearing from you after your appointment on..." + (show)
@hopeful33250

I appreciate your update, @feebee. I look forward to hearing from you after your appointment on the 21st.
Will you provide an update after you see this new oncologist?

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I sure will!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 29, 2020
In reply to @freeangel "Thank you for your kind words. I couldn't tell if my first msg posted, so that's..." + (show)
@freeangel

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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Hello @freeangel,

The last time you posted you were going to see a GI doctor. I hope that appointment went well. How are you feeling now?

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jenniferrasigade | @jenniferrasigade | Nov 30, 2023
In reply to @freeangel "Thank you for your kind words. I couldn't tell if my first msg posted, so that's..." + (show)
@freeangel

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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It’s a medical record. They won’t remove anything. However, you can get life insurance if your cancer is inactive for two years or more.

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