GENETIC Testing? My Insurance Is NOT Going To Cover It. MM Is Not Hereditary...what Else Would This Test Show? Would It Be Worth Self Pay? | MyMyelomaTeam

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GENETIC Testing? My Insurance Is NOT Going To Cover It. MM Is Not Hereditary...what Else Would This Test Show? Would It Be Worth Self Pay?
A MyMyelomaTeam Member asked a question 💭

It is one of those appointments that has just shown up in my portal...

posted November 28, 2023
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A MyMyelomaTeam Member

I requested genetic testing and have appointment next week. My brother was diagnosed with ankylosis spondylitis in his twenties and my sister had back surgery 2018. they are twins. I read that that could be a cause of MM. I actually have always had a healthy back, no real issues until treatment started but my mother said there was a gene they test for to confirm and it’s hereditary. All I wanted was that test, now they have me doing genetic test. I better call insurance, not doing it if not covered. Thanks for making me aware of the costs possibly. ❤️

posted November 28, 2023 (edited)
A MyMyelomaTeam Member

Since my mom also has MM...son is going to be tested...I think his doctor has him worried...simple blood and urine tests should rule MM out for him...I just don't want to spend..what I'm sure is thousands of dollars...

posted November 28, 2023
A MyMyelomaTeam Member

I can’t believe I was thinking the same thing while lying in bed a few hours ago! Not so much my personal testing but more if some of us are predisposed to this disease. Is there something in our genetics 🧬 that allows us to contract MM vs the rest of the population. There are about 170,000 of us who have MM. Many of us inhale the same air, ingest the same food, touch the same things, imbibe the same liquids. But for some reason we were stricken. I’m glad you emphasized not hereditary. Even though family members may get MM it’s most likely they have been exposed to the same environment and may have the same genetic weakness.

I am hoping more research is done on the genome and what area makes us vulnerable to MM. Once that is accomplished your insurance company will pay for lifetime testing to stay ahead of this stealthy disease.

posted November 28, 2023
A MyMyelomaTeam Member

Joan, they do test for the genetic alterations on the myeloma cells themselves. It's very important to know what type of myeloma we have and if we have any high risk genetic alterations that can make treatment tricky. I have P53/17p deletion and 11:14 translocation on my myeloma cells. It's important to have Fish testing done on our first bone marrow biopsy.

posted December 1, 2023
A MyMyelomaTeam Member

I don't know if this relates, but Ron was diagnosed with prostate cancer 2 years before his MM diagnosis. His prostate oncologist recommended genetic testing, but it was testing of the cancer itself, not on his dna. We understood it to be a matter of determining the aggressiveness of his tumor, and the best approach for attacking it. It wasn't terribly expensive. But like I said, it may not be what you're being encouraged to consider; no idea if there's any such test to target one's specific MM dna. If not, it seems an exercise in futility since the disease isn't hereditary so far as current science knows.

posted December 1, 2023

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