At what age did/will you tell your children...

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Mominator
Mominator Member Posts: 1,575
edited March 2016 in Genetic Testing

...that you carry this gene, and that they may as well?

Due to family history, and my mother being positive for BRCA2, I got counseling, testing, and discovered that I am positive for the BRCA2 mutation. I learned a lot about the BRCA2 risks. (I also have a Variation of Unknown Significance on STK11. I will register on PROMPT to learn more about STK11.)

I didn't want to wait for cancer to get me. Since I am past my child-bearing years, I had prophylactic bilateral salpingo-oopherectomy (BSO) and prophylactic bilateral mastectomy with reconstruction. At the time, I told my children I had "preventative maintenance." They haven't asked any questions.

I got my pathology report. Everything removed was benign. However, there were many areas of hyperplasia in both my breasts. I feel that I had surgery before my breasts had a chance to turn cancerous.

I have discussed being BRCA2 positive with my spouse, my siblings, my parents, and my uncle. My sister is negative for the mutation.

I have not yet discussed this with my children, who are minors each with their own special needs. My son is the oldest and has autism. I think a delay there is not harmful. My daughters are teens, with depression, anxiety, and other issues to battle. I will discuss this privately with our pediatrician and my doctors. My target is around ages 22 to 25. Age 25 is when we would start increased surveillance if they are positive.

I was wondering what experience have other parents had in telling their children, and what ages did you tell them? Have your children been tested?

Mominator

BRCA2+, wife, mom to 3 children of various special needs, musician, volunteer, 54 yrs young

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited December 2015

    I think your plan is a good one. I wouldn't lay this burden on a teenager's shoulders and I certainly wouldn't share it with an autistic child just yet. There is nothing they can do about this yet and I would think it would worry them terribly.

    In Sept 2015, found out that I have 2 gene mutations, PALB2 and Chek2. PALB2 is the Pathway And Locater to BRCA2; as such, it raises the risk of BC into the 30% range, higher if there is significant family history. Since I have a heavy family history of cancers, including premenopausal BCs, colon, lung, and pancreatic cancers, my genetics counselor has estimated my risk at 45%+. Yowza! Since my kids are in their 20s, and one of my aunts had BC at age 24, I thought it best to inform them. They have elected to be tested now rather than later. I am praying that my DD is negative.

    As a result of these gene mutations, I have undergone chemo. I will have a BMX later in Jan-Feb, followed by oophorectomy or hysterectomy later in the year. Good times. But if that's what it takes to give me the best chance of NOT having to go through this again, I'll do it.

    Best of luck to you. I know it must be hard to hold all this in, but I commend you for keeping it under wraps until your children are in a better position to handle it.

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  • Mominator
    Mominator Member Posts: 1,575
    edited January 2016

    mustlovepoodles, thank you for your insightful post. You've help me strike a balance between need to know and burden of worry.

    I have a few thoughts for you and your "good times" ahead. While I was researching my treatment options, I learned that some surgeries can be combined. The advantages include less times that you need to go under general anesthesia and less recoveries.

    Something to think about when you plan with your team. Best wishes on your journey.

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  • Mominator
    Mominator Member Posts: 1,575
    edited January 2016

    mustlovepoodles,I forgot to say, I'm wishing your family all the best. Please let me know your children's testing results.

    Mominator

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  • Polarpegs
    Polarpegs Member Posts: 3
    edited February 2016

    I have been diagnosed with triple negative breast cancer and advised to have genetic testing. I have 2 boys ages 19 and 16 and a daughter 17. I was hesitant to say anything to them about the possibility of a gene tic link although only one other family member has breast cancer and she is not TN. I too had discussed this with my other family members but my kids. However when we sat down to have a family meeting and check in, it was my daughter that started voicing her own concerns about when she should be tested. I realized then that while I thought I was protecting her , she was already thinking about it and having her own fears . I also realized that so many other people having that information left the door open for my kids to over hear a conversation I hadn't had with them yet. It was. At that point I decided to tell them that I was advised to be tested and that once those results came back we would know more and what plans and choices they would have. I also told them them about the counselling services at the cancer clinic and that we could go and talk to our doctor.

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  • KBeee
    KBeee Member Posts: 5,109
    edited February 2016

    I had BC at 43 and a recurrence at 45. My mom has had breast cancer twice. My grandfather and his father dies of cancer. My dad has had prostate cancer. DH had melanoma (caught very early. His mom has had BC twice and his dad has had prostate cancer. I feel like my kids are walking time bombs when it comes to cancer. I have the same VUS as my mom in CHEK2, which the folks are petty sure is a pathological variant. I have another genetic test pending. DH and I have been open with our kids about the family history from teh beginning. Our kids see the dermatologist every year fro skin screening already. They know that's fro life due to melanoma history in the family. When they are somewhere between 18 and 22, I will explain more about the genetics and let them decide for themselves about testing. Regardless of what the tests show, I will encourage them to do regular self exams and get mammos early.

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  • lekker
    lekker Member Posts: 594
    edited February 2016

    Mominator- do you have access to a genetic counselor? If so, I highly recommend a session with one. He/she should be able to help you work through the various issues related to discussing this with children. I'm sorry you have to deal with this.

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  • lulu27
    lulu27 Member Posts: 2
    edited March 2016

    hello moninator

    I am 25 years old and my mother is positive for brca2 gene. My mother was diagnosed 2 months ago. She had breast cancer last year. I was there with her when she was diagnosed. Our genetic counselor was surprised to know that I wanted to get tested too because she thought it is something that will impact my life. I personally think it i'll impact my life more not knowing if I am positive. Right now I am given the opportunity to know if I am positive or negative. If i am negative that is great, but if I am positive it only means there are somethings I need to add to my life like getting MRIs every year and taking proper precautions. I have the chance to be on top of it and not letting cancer scared me.

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