Seeings your NETs tumors on Scans

Posted by becky6869 @becky6869, Nov 22, 2019

I was wondering if anyone has been shown their tumors on any scans? Mine are lung and lymph nodes.

I saw my first rectal carcinoid and its recurrence 10 years later on the screen connected to the colonoscopy device, before they were excised for biopsies. But that is not what you mean, is it?

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@mgreene

I saw my first rectal carcinoid and its recurrence 10 years later on the screen connected to the colonoscopy device, before they were excised for biopsies. But that is not what you mean, is it?

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Yes. Just to see any of them. I have never been shown any of mine. They just watch them. Now have 6.

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In my case, I saw what looked like a tiny skin tag. It was the color as the flesh of the surrounding tissue.

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Do they show you them on scans?

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Hi @becky6869, I want to make sure I understand your question correctly. Scans that you have had show that you have 6 tumors visible on your lung and lymph nodes. However, your care team has never shown the scans to you. Is that correct?

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Yes. That is correct. I had one removed Dec 2014 aling with 24 lymph nodes. Tumor was cancer as well as 6 of the lymph nodes. That was done in Birmingham, AL.
Moved to FL and am told I have 5 more. Just was told I have one behind my collar bone. I have never been shown any scans. I feel like I am in the dark, as it is, oh by the way, you have one behind your collar bone.

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The one removed in 2014 was in right lower lung. Was told I had a smaller one in left upper lung. Was never told anything about the grade or any other info. Just to watch them.

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@becky6869

Do they show you them on scans?

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I was handed copies of still, color screen grabs, you might call them, by my gastroenterologist. But in my case, at least, scans as I think you mean them were not applicable. They would not have shown up on a scan. I think I am not much help to you. It sounds to me like you are not with the right doctor for you.

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@mgreene

I was handed copies of still, color screen grabs, you might call them, by my gastroenterologist. But in my case, at least, scans as I think you mean them were not applicable. They would not have shown up on a scan. I think I am not much help to you. It sounds to me like you are not with the right doctor for you.

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My tumors are in lungs. Had 1 Dr in AL and 1 in FL. Neither showed me my tumors.

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@becky6869

My tumors are in lungs. Had 1 Dr in AL and 1 in FL. Neither showed me my tumors.

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Doing this by myself

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Hello @becky6869

I would encourage you to write or call the doctor's offices and ask for copies of the scans and pictures so that you will have a copy of your own records to keep and take with you when you visit other specialists. Sometimes patients need to insist on understanding their medical problems in order to be their own advocates for their health care.

Once you get copies of the reports, I would suggest that you keep them in a folder or three-ring binder to take with you when you go to the doctor. If the doctor wants their own copies, be sure that you ask for your original copies to be given back to you.

Does this sound like something you can do?

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@becky6869

Doing this by myself

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Is your doctor at the Mayo Clinic in Jacksonville, Florida?

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@mgreene

Is your doctor at the Mayo Clinic in Jacksonville, Florida?

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No. At MD Anderson. Not a specialist.
Turning 65 next month, so I got the F plan hoping to het into Mayo. Go to support group there.

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I thought you lived in Florida. Must be confused. Sorry.

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@mgreene

I thought you lived in Florida. Must be confused. Sorry.

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I do live in FL now. Just a few miles from Mayo. Hoping to get in there.

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