BRCA testing when kids turn 18?

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AlteredArtgirl72
AlteredArtgirl72 Member Posts: 24
edited September 2017 in High Risk for Breast Cancer

After my diagnosis in 2015 I was sent for genetic testing. This past Feb my variant was upgraded to "Sufficient evidence for dosage pathogenicity." The variant is rare – it's only been seen two other times, one is a family in Germany and the other is my brother. Aside from the BRCA1 variant we also have extensive family history (on both sides of my family) including a male with breast cancer so I don't feel like this is something we can ignore.

We have two sons, ages 15 and 18. They know about my genetic testing but not sure it's occurred to them that it could affect them. I'm 5 weeks out from bilateral mastectomies and will be having reconstructive surgery in Oct, so discussing all of this with them hasn't been a priority. But I'd love to hear from any of you with genetic variants/mutations about how you discussed the situation with your children? I'm understanding children need to be 18 before they can be tested? (I was BRCA tested through Myriad then cancer panel through Invitae.)

Thank you so much for any insight you can share! This is hard stuff!

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2017

    AlteredArtgirl, we know talking to your sons about it can be very hard! We're sure some of our community members will be around shortly to offer some insight but, in the mean time, you might want to check out the following article from our main site:

    Sharing Genetic Information With Children and Young Adults

    Hope this helps!

    The Mods

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  • AlteredArtgirl72
    AlteredArtgirl72 Member Posts: 24
    edited September 2017

    Mods, thank you for the link – will read and have my husband read as well! :)

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2017

    Hi, Artgirl. I don't have a BRCA mutation. I have one that carries increased risk for some other cancers. You might ask your genetics specialists this question: If your kids were to test positive, at what age would recommended screening start? I have a genetics specialist and counselor at my cancer center. They advised me about what age my kid should start screening, which was much later than 18. So I decided that for this kid, talking about it later rather than earlier would be best. Why test and add this worry when it's too soon to take any action? This is what I decided regarding the mutation. As far as bc risk, I found out that my kid thought getting bc would happen for sure because I had it, and they were surprised and reassured to learn the risk was lower. So if the kids are already concerned about their risk, then giving them solid information is better than leaving them with vague worries. I hate how this bc stuff affects our kids.

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  • AlteredArtgirl72
    AlteredArtgirl72 Member Posts: 24
    edited September 2017

    Hi, Shetland :) Thank you for your response – and it totally makes sense!

    My geneticist at Cincinnati Children's had said since my age of diagnosis is 39 that my sisters/nieces should start getting mammograms at age 29 (the "10 years earlier than family member diagnosis" suggestion.) My sisters are in their 30s and insurance is now covering their mammograms, nieces are middle school so they're a ways out from that point.

    The geneticist leading the medical study for my family's variant (Ginger) called Friday to let me know two more family members tested positive for the variant so I took your advice and asked her what she thought about when to test. She said #1, BRCA1 isn't an indicator for pediatric cancers so there's no need to test early. And #2, doing the testing in their mid/later-20s may be appropriate as they're nearing the age when they'd start getting mammograms and also may be part of their life decision making processes at that point.


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  • Runnermum
    Runnermum Member Posts: 383
    edited September 2017

    Imay not be remembering correctly but went thru genetic testing/counseling this summer. I tested negative so have not had any follow up appts with genetic counselor, but I remember from my appt with her that we discussed the risks of the ability for my children to obtain life insurance if I had tested positive this summer and chose to have our children tested now and they also tested positive. We discussed this as 2 of our children are both in 20s and still in college. So neither have started their careers yet. And we have 1 child still in his teen years.


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  • AlteredArtgirl72
    AlteredArtgirl72 Member Posts: 24
    edited September 2017

    Runnermum That was definitely another aspect I wondered about and would encourage our children to get life insurance before then. I know medical insurers aren't currently allowed to use genetic testing results to deny healthcare coverage but I think (?) life insurance companies are able to use that as a factor. Though just realized you're RunnerMUM rather than "Mom" so wondering if you're in UK or Australia? :)

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  • Runnermum
    Runnermum Member Posts: 383
    edited September 2017

    Nope live in the U.S. Runnermom was already in use so went with runnrmum.

    That's how I remember genetic counselor explaining to me...can not be denied medical ins but can be denied life ins with positive test result.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited September 2017

    Thanks for the heads-up about life insurance! Will let family members know.

    Your geneticist's advice makes sense, Artgirl. That is a good point, to also consider when the kids will be making life decisions. I think with pathogenic BRCA mutations, some women may choose to not delay childbearing, so they can have their kids and then do a prophylactic oophorectomy.

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  • AlteredArtgirl72
    AlteredArtgirl72 Member Posts: 24
    edited September 2017

    Runnermum and Shetland Thank you so much for your responses. This may seem like a low-key discussion but it's hard to have these conversations with friends because they've not been through the process (through no fault of their own!) It's a lot of info to take in when you're going through it ourselves, let alone trying to explain it to someone else.

    Shetland, regarding decisions on having kids earlier, my cousin's wife was diagnosed with BC at age 32 right after they got engaged. She asked about the possibility of harvesting eggs so they could have children after treatment but her cancer diagnosis was such that her surgeon and oncologist said that process for can take months and they didn't feel it would be smart to delay her treatment (she had chemo, surgery and radiation though not sure in what order.) Learning that was another one of those "I didn't know that" moments and may be something my nieces find valuable to know if they end up dealing with the BRCA1 variant as well.

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