Family Discovered They Are Check2 Positive Because of Me.

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rachelcarter35
rachelcarter35 Member Posts: 368
edited December 2018 in Genetic Testing

Our family has never had any cancer so it was quite a surprise this spring when I found out that I had cancer in both breasts and needed a double mastectomy. I did genetic testing and discovered I was check2 positive. All of the women in my family tested to see if they had it at that point. Two of my three sisters and one niece of two tested positive. Strangely I felt guilty having to scare them this way. Rationally I know I've improved their odds because now they know to be more vigilant and will be able to get more testing from their insurance companies. They have all started their screening for colon cancer and breast cancer and thankfully are cancer free at this point.

Yesterday I found out that my 30 year old niece wants a double mastectomy. It feels like such an over reaction. I wish she knew how hard it is. I'm making the best of my frankenbreasts but am very clear that if I had had the choice I would have kept my breasts.

She is not taking into consideration that her grandmother and mother have lived to 85 and 65 respectively with no cancer of any kind. She is not taking into consideration the potential complications and health risks of the mastectomies themselves. She is not taking into consideration how she will look aesthetically.

After 5 months of treatment and getting back to work and health once again cancer is messing with my life in a new way!


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  • Salamandra
    Salamandra Member Posts: 1,444
    edited November 2018

    That is hard to watch. If you can, encourage her to get multiple medical opinions and do her own research. That might make her feel better about waiting. Also to explore with a therapist.

    I met my radiation oncologist for the first time today. He spent a little time ranting about women who opt for mastectomy when lumpectomy+radiation is on the table. One thing I've been thinking about though is that women have different relationships to their bodies, and to their breasts, and even to our gender. I would assume that for women who make that choice, informed etc, they are doing what's best for them based on a whole picture that someone outside, even a doctor, can't necessarily see.

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  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited November 2018

    Thanks Salamandra I actually enjoyed being flat chested after my mastectomies. It was freeing. I had been size G! For my niece though I wish she knew how brutal it all is. It feels like she's taking a bazooka to a mouse.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2018

    Rachel, why did only the women in your family test? My understanding is CHEK2 is a significant colon cancer risk for men too. I was tested for CHEK2 because of my dad's family colon cancer history

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  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited November 2018

    Only living relatives are women.

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  • star2017
    star2017 Member Posts: 827
    edited November 2018

    That's tough, Rachel. You've done the right thing by letting her know (as I did all my cousins), but I can understand how you feel watching her. Is there an NCI designated cancer center nearby? Can she speak to other women who have been in a similar position. It may be easier for her to hear from strangers too.


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  • rachelcarter35
    rachelcarter35 Member Posts: 368
    edited November 2018

    I've done all I can and have backed off at this point. One of my sisters is closer to her and is in discussion about it. It can't become an argument to win or lose but the best decision for her. I don't want her to dig in her heals. I've said my piece so I'm leaving it alone at this point. Maybe she is on this forum and will find this thread.

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  • Moderators
    Moderators Member Posts: 25,912
    edited December 2018

    rachelcarter35, what did your niece decide?


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  • KBeee
    KBeee Member Posts: 5,109
    edited December 2018

    The CHEK2 gene may have come from your father's side and not your mother's. My mom had breast cancer and then a new primary in her other breast 20 years later. I have had breast cancer twice. Her mom lived to be over 100, but her dad had multiple types of cancer, and his dad also had cancer, along with many others on that side (and her dad got cancer in his 60s, my mom had it in her early 50s and I had it in my early 40s). We have a VUS in the CHEK2 gene (which is thought to be a problematic VUS). I understand your concerns, but ultimately, your niece has to make her own decisions, so it's good you backed off. Hopefully she has given it thought, and your concerns and trouble with the surgeries are things she has should considered. Should my daughters get tested and decide for a mastectomy, I'd support them. If they decide against it and just want extra screening, I'd support them in that decision too. Luckily I did not have complications with my BMX, and my new "breasts" look better than my old ones ever did, but I've seen enough complications to know how wrong things can go. She may feel that by doing this surgery now, she is minimizing her risk of cancer later, and not only having to have BMX, but also chemotherapy, radiation, etc...which carry their own risks and life disruptions (as you have unfortunately had to experience).

    The good news is that you got tested, you were proactive in sharing it with your family, allowing them to be proactive, and giving them the opportunity to get whatever monitoring they need to be sure any cancers are found early. You should not feel guilty in any way. You should feel empowered, and you in turn gave them the opportunity to be empowered to make decisions...even if they were different decisions than you would have made.


    Hoping your reconstruction heals better and that things are looking up for you.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited December 2018

    My sister and I are both Chek 2 positive - myself, my mom and sister were diagnosed with BC within 3 years. However, our mother was not. It came from my dad's side of the family. They had a lot of different cancers and my dad died of pancreatic cancer.

    We were the first breast cancers in our family's modern history, but who knows many years ago?

    Going to a good genetic counselor is a wise idea at a major cancer center or university. We did and it was very helpful. It would be wise if your niece sought their advice, but you have no control over it.

    Chek 2 was only discovered about 20 years ago, so I feel fortunate they have learned so much in such a short time. However, many doctors in my mid-size city were not aware of Chek 2. But at our large university NCI Designated Hospital where we received treatment, they knew so much.

    Sending all my best to you...




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