Genetic testing...does anyone have the CHEK2 gene mutation

Posted by sandyjr @sandyjr, Sep 17, 2019

I have had bilateral breast cancer. According to my genetic test, I do not have the BRAC1 or BRAC2 mutation...I have the very rare CHEK 2 mutation. Has anyone had this mutation? If so, what was your plan of action?

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I have Chek 2 and have been treated for prostate and breast cancer. I see my internist and Mayo oncologist and proton radiation oncologist each twice each year. So far I am doing well but hate tamoxifen 🤢!

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@colleenyoung

@sandyjr, I've been using Google and internet searches. But you're right. Most of the information comes from research studies and journals. There's not much info in layman's language unfortunately. The link in my post above is pretty comprehensive and not too hard to understand, not easy, but not too hard.

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Type Google Scholar onto your Google search bar. It will take you to 100's of articles about Chek2.

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My daughter has the CHEK2 mutation. She found out when she was enrolled in a study.
I had breast cancer 30 years ago. There is no history of any cancer in my family.
I will request a genetic study myself- I have another daughter and a son.
My daughter with the CHEK2 has been followed with mammogram, ultrasound and MRI after suspicious findings. So far, so good.

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@astaingegerdm

My daughter has the CHEK2 mutation. She found out when she was enrolled in a study.
I had breast cancer 30 years ago. There is no history of any cancer in my family.
I will request a genetic study myself- I have another daughter and a son.
My daughter with the CHEK2 has been followed with mammogram, ultrasound and MRI after suspicious findings. So far, so good.

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I have the Chek2 gene and 2 of my 3 adult children recently tested positive for it. They are now being followed closely by their physicians who are familiar with this nasty gene.

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@dick61

I have the Chek2 gene and 2 of my 3 adult children recently tested positive for it. They are now being followed closely by their physicians who are familiar with this nasty gene.

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@dick61- I’m afraid that my other 2 children have it too.
It really scared us to find out of this gene mutation’s existence.

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While irrational, I felt guilty giving the Chek2 gene mutation to my 2 adult children. However, they are medically intelligent and have become aggressive in watchful waiting. Makes me feel a tad better.

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You should not feel guilty. I'm sad that my son has my mutations, but it's nothing I did. I don't blame my parents for having passed anything on to me. They gave me life. My son had a 50/50 chance of inheriting 4 identified genetic mutations I had and he got all four! What are the odds of that? BRCA2, CHEK2, HNPP, and a rare unknown vascular variant. The genetic counselor said, "This one is weird. Only one other person has ever had it." I said, "It's my son!"

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I have the Chek 2 Kinase mutation. I now get a breast MRI once a year and regular mammogram once a year.

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I did have genetic counseling myself to see if my daughter got her mutation from me. I tested negative for CHEK2- so it probably was passed from her father.
Of course I had breast cancer- now she has 2 factors.

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@dick61

I have Chek 2 and have been treated for prostate and breast cancer. I see my internist and Mayo oncologist and proton radiation oncologist each twice each year. So far I am doing well but hate tamoxifen 🤢!

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Tamoxifen used to make me sick to my stomach as well but when I switched to taking it before bed I stopped having this side effect. I've also heard a lot about switching manufacturers if you are experiences side effects.

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