1. < Neuroendocrine Tumors (NETs)

To get genetic testing, or not?

Posted by gangcarotid1 @gangcarotid1, Mar 6 8:00am

I've been on the fence whether to have genetic testing. My concern is how it might affect my future insurance coverage, and possibly, that of my children. I was diagnosed with a carotid body paraganglioma on my right side of my neck last yr and sought care at Mayo in Rochester. The endocrinologist I saw believed I had too many symptoms to be caused by the small tumor (1.5 cm) so ordered a full body scan & found 2 malignant tumors on left kidney, successfully removed in Oct. At a followup appt, I learned I now have a suspicious nodule on lung (1st place kidney cancer likes to spread if it's going to), & 1.3 cm cyst on right kidney. While I know insurances can't deny coverage based on past medical issues, I'm concerned genetic testing will cause real coverage problems. The geneticist i saw last Aug at Mayo discussed possible insurance problems that could occur. I have excellent insurance coverage now. Anyone else having these concerns?

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ericnjeffrey | @ericnjeffrey | Mar 6 10:44am

I haven’t heard of genetic testing causing insurance concerns. It’s a good thought. I’ll check with my insurance.

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gangcarotid1 | @gangcarotid1 | Mar 6 12:16pm

My understanding is, the pre-existing issue could happen if you change insurances...

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annamay | @annamay | Mar 7 10:44am

I had genetic testing this year. Both a sibling and I found we had neuroendocrine tumors in the small intestine. Since we have another sibling, with a child, we are having the testing. So far I found that I do have an inherited mutation. Now both of my siblings are being tested.
I was told that a positive test could affect future life insurance coverage, not medical insurance. I'm retired so that is not an issue for me at this stage of my life. I realize that I already have a cancer diagnosis, that is already a label on me. But there are different factors for each of us to consider. There are many changes in the current white house that I don't know what the future will hold.
I wish you the best and hope you find the support that you deserve.

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1 reply
gangcarotid1 | @gangcarotid1 | Mar 7 11:21am
In reply to @annamay "I had genetic testing this year. Both a sibling and I found we had neuroendocrine tumors..." + (show)
@annamay

I had genetic testing this year. Both a sibling and I found we had neuroendocrine tumors in the small intestine. Since we have another sibling, with a child, we are having the testing. So far I found that I do have an inherited mutation. Now both of my siblings are being tested.
I was told that a positive test could affect future life insurance coverage, not medical insurance. I'm retired so that is not an issue for me at this stage of my life. I realize that I already have a cancer diagnosis, that is already a label on me. But there are different factors for each of us to consider. There are many changes in the current white house that I don't know what the future will hold.
I wish you the best and hope you find the support that you deserve.

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Thank you for your reply. Yes, I'm on same pg w the cancer label, and am retired and kids settled on their own so life insurance isn't on my list of Todd's. I've decided if another growth is found anywhere in me, I'm going for the genetic testing, as it can target possible specific DNA mutations that may be the answer to ALL the growths.

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gangcarotid1 | @gangcarotid1 | Mar 7 11:21am

To Do's, not "Todd's"...

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