Chek2 gene - I have it and had breast cancer 5 years ago

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GoldCoaster2018
GoldCoaster2018 Member Posts: 3
edited February 2020 in High Risk of Recurrence or Second Breast Cancer

Hi, I've recently been told that I have the Chek2 gene and it would have given me the bc 5 years ago. I'm gathering information after speaking with my surgeon, wondering whether to have a bilateral mastectomy (had a lumpectomy at the time as my tumour was found early and was small).

Can anyone help me with their experience with this, it sounds as though my increased risk is now between 40-60% higher of getting a recurrence (family history etc), so I don't know if I can (mentally) cope with just being monitored more frequently (it does my head in once a year!)

Thanks for any advice or experience that you can help me with, much appreciated :-)

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

    Dear GoldCoaster2018,

    Welcome to the BCO community. We are sorry that you have not yet received any responses. You might consider doing a search using the blue tool bar and typing in CHECK2. Such should take you to other posted about the CHECK2 gene and possible members with whom you can correspond. The Mods

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

    My sister and I have the Chek 2 mutation - we both had breast cancer at age 55. We were both Stage 3 at diagnosis - mine was 7 years ago, hers was 3.5 years ago. At the time of my diagnosis, I had a single MX as I did not know about the gene mutation. After my mom and sister were diagnosed, we of course had testing. Our mom did not have the gene.

    My sister initially had a lumpectomy, but got the advice at our major cancer center to have a double MX which she did. She could not stand the stress. My Onc highly suggested I have the other breast removed and I was going to do that this month. However, after a lot of testing, etc., my surgeon did not want to do the surgery because of other health issues I have - mainly my heart. I had major heart damage during chemo and Herceptin. I am being monitored even more closely as a result.

    I suggest you get genetic counseling, if you havne't already done so. It helps to put things in perspective on how to move forward.


    Sending my best wishes to you!

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  • Fritzmylove
    Fritzmylove Member Posts: 330
    edited November 2018

    I have the CHEK2 gene mutation, and will be having a bilateral mastectomy, aswell has a hysterectomy and oopherectomy once I finish chemo. I had planned on the BMX even before discovering the mutation, but the hyst/ooph was suggested by my gyne onc. Not only will it eliminate a large amount of estrogen (I’m ER+) but it also eliminates the risk of ovarian and endometrial cancer which is a risk with CHEK2.

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  • GoldCoaster2018
    GoldCoaster2018 Member Posts: 3
    edited November 2018

    Thank you for your response, I'm also very estrogen positive but had a complete hysterectomy a year after my lumpectomy. Also have had the thyroid removed years ago, so it is "only" more regular colonoscopies and whether to have the mastectomy now...

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  • GoldCoaster2018
    GoldCoaster2018 Member Posts: 3
    edited November 2018

    HI Denise, thank you for your response and I'm very sorry to hear of such a strong family similarity for something so difficult! It would be hard, not to be able to have the other breast removed, due to your health - I hope that you are doing as well as can be expected with something like this.

    I did have a session with the geneticist to discuss my results and have now seen my surgeon re the options too, just wonder if the statistics are high enough to have the mastectomy, I nearly did it at the time but didn't know about the Chek2 then!

    thanks again :-)

    Andie

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  • Ladybug1952
    Ladybug1952 Member Posts: 7
    edited December 2018

    Hi Goldcoaster2018,

    I am also from Long Island's Gold Coast if that's what you are referring to. I was diagnosed In 2012 with Stage 3 IDC, 5 cm, right, several nodes, HR+, Her2- . Chemo (ACT) shrunk the tumor by 99%. I also had 38 radiation treatments and took Femara for four years Had a modified radical mastectomy after chemo and 13 axilla nodes removed.

    Mammogram every 6 months to left breast, tons of blood work every 3 months and I thought I dodged a bullet Fast forward to Oct. 2016 with a nagging 'pneumonia' that really turned out to be fluid in my left lung pleura with metastasis to bones and lymph nodes is the mediadtnum(thorax) . Stage IV

    No one in my family ever had breast or gynecological cancer. Finally I insisted on genetic counseling and my insurance agreed to the $6,000 testing because of other cancers on maternal and paternal side: bladder, stomach, prostate, leukemia.

    I was very surprised to learn I have a Chek2 genetic mutation. I had never heard of it. If I knew in 2012 what I know now I would have had a bilateral mastectomy and maybe considered a total hysterectomy.I am over 60 . I was told that due to the Chek2 mutation, every first degree blood relative has a 50% chance of getting cancer: specifically prostate, breast, stomach, pancreas. I am glad to know this so my children and siblings can be vigilant about testing I also read that a Chek2 mutation gave me a 70% chance of breast cancer at some point in my life. Lousy odds for sure....

    The first node found at Stage 4 was on the left side,'healthy' breast and it was a lymph node above my collarbone, the supraclavical node. My hormonal and Her2 status hasn't changed after biopsy which you need to know for treatment . I am doing extremely well over 2 years after the stage 4 diagnosis I have used Ibrance and Faslodex for 17 months with success of nodes shrinking and Xgeva injections monthly halted the bone mets and led to healing . Now on monthly Afinitor with Aromasin and Xgeva injection every 3 months. Pleural fluid has dried up and I feel really good. I also had only 14 rads to my mediastinum which knocked out a node that was causing a cough I know there are brand new treatments for Chek2, which I believe is an oral drug called Lynparza or Olaparib. There were a few women who were in clinical trials and did well. I am not sure if you must be stage 4 to receive it. Having a double MX is not an easy decision. I am not sure if it would help me much at this point, but it has not yet been suggested I plan to question my onc further.

    I hope this information gives you some insight into your genetic risks. Chek2 really seems to have been realized in the last 10 years. There isn't as much info as for BRACA 1 and 2 .

    Wishing you good health and healing with whatever choices you make. It's a bumpy road for sure, but new drugs are out there so there is hope.

    Stay well!

    D.











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  • Arya44
    Arya44 Member Posts: 54
    edited February 2020

    HI GoldCoaster2018,

    I just got results back recently from genetic testing and was very surprised to find out I had check 2 mutation. There is no family history of breast cancer on either side so am kind of floored!

    The genetic test was done almost a year after my breast cancer diagnosis and the only treatment I had was double mastectomy with reconstruction for bilateral cancer, I did not need chemo because I had a low oncotype score that meant very little chance of recurrence.

    Fritzmylove...I was never given information that there is higher risk of ovarian and endometrial cancer with check2, but was told there is a slightly increased risk of colon cancer.


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