What To Do???

When I was diagnosed I had no family history of breast cancer.  In fact I wasn’t able to check off any of the risk factors.  I had known women who were concerned about the possibility because of a strong family history, but it wasn’t something I ever really considered.  Nearly a year to the day after my diagnosis my mother was diagnosed.  All of a sudden our family became one of those I’d only heard about.  Now I have things to sort through that I never thought I’d have to.  Things I’d rather not think about, but they concern my children so I don’t see a choice.  I also have two sisters to think about.

The first issue is do I get tested for the BRCA gene.  I just don’t know.  I may have a family history now, but it’s still not a very strong one.  And I’m afraid the lack of the BRCA gene may give my sisters and my daughter a false sense of security.  By the same token, if I DO have the BRCA gene it doesn’t necessarily mean they will end up with breast cancer.  I suppose I should talk to my sisters about this.  As for Katie, she’s 13 right now.  My oncologist suggested I may want to be tested when she’s a little bit older.  It could affect her decisions about marriage and, even more importantly, having children sooner rather than later.

And what about Taylor.  He’s 16 and has a lovely girlfriend.  Her mother is also a breast cancer survivor.  Let’s just say they end up getting married someday.  How does the fact that both mothers had breast cancer affect their children?  And should the double history be part of their decision to get married?  Adding to all this is what I saw on GMA yesterday morning [article].  We now have the capability of screening embrios for an inherited gene which would increase the risk of breast cancer.  So does that play a part in their decisions?

Sometimes I have this very irrational guilt over what I’ve done to my children.  Stupid, I know.  I didn’t ask for the cancer.  But you know how it is for us moms.  We want to protect our children from the ugly.  I don’t want them to have to ask the questions.  I wish neither of them had to think about what my cancer and my mother’s cancer means for them.  But I can wish in one hand and spit in the other.  I certainly don’t want them to bury their heads in the sand.

What thoughts have you had on these issues?


9 Responses to What To Do???

  1. imstell says:

    Jen – I didn’t think I had a family history either. Then my mom was diagnosed 6 months after I was. We are both BRCA2 positive. Turns out we actually DID have quite a family history. My great uncle and his 3 sisters had all died from breast cancer. Family secrets! Bah! Though I don’t have any girls, my boys are also at an increased risk.

    I think I’d stop short of genetic profiling, however. I wouldn’t do it in hindsight for either the BRCA gene OR my youngist’s genetic blindness. For me, it’s messing with God’s plan.

  2. bcjenster says:

    Imstell – I totally agree about the genetic profiling. I do confess to worrying more about my daughter than my son, simply because breast cancer is so uncommon in males. But like I said, it’s still something for my son to consider when he starts thinking about marriage and children, etc.

  3. jillaldrich says:

    Great post, Jen. My first response was to think that it would be near impossible for a boy or a girl in love to let this information play into a decision of the heart. My second response was that you absolutely should let your kids know that they are at higher risk and that marrying someone with equally high risk could mean off-the-charts risk for their own children. I struggle with this issue. I want to let my own Katie know of her increased risk in the hopes that she’ll do whatever it takes to lower that risk (avoiding HRT, eating less sugar, drinking in moderation if at all, low-fat diet, etc.) but I also don’t want her to have to constantly worry about it. I’ve decided to err on the side of more information. It is what it is, and although it breaks my heart that she has to now consider these things, those things could save her life. And I don’t know how I feel about genetic profililng. Thanks for giving me, as always, something to think about.

  4. sprucehillfarm says:

    These questions are always on my mind. I have three daughters. My oldest is 14. I do have breast cancer family history. My grandmother had it. But she was in her late 70s when she had it. I have no other risk factors. I worry for my girls and wonder what testing would do to their lives. I have some time to decide. It is a tough decision.

  5. tori says:

    I think it is important to share all the facts with the kids when the time is right. That is in theory. In reality, it is really hard to imagine telling my kids that they were at higher risk for anything. I think I would want to know though, and if I had known earlier that I was going to get cancer, I wouldn’t have had to change anything but what if I hadn’t gotten married at 20 and what if I hadn’t been done having kids by the time I got it? What an awful position to be in. I know you know that it isn’t your fault that you had cancer, and it isn’t your fault that your kids are more at risk, but I also know that just because I know that about myself, it doesn’t make me feel any less guilty about being the one who brings it to the family.

  6. mod*mom says:

    i had to make that decision whether to be tested (my mother, grandmother, plus a great grandmother on the other side had breast cancer). i like as much information as possible, especially for my daughters planning benefit + i wanted to know whether i might want to have a prophilactic bilateral + hysterectomy. even though, i had all that history, i don’t have the BRCA1 + 2 genes they can test for. i don’t even have the same kind of hormone type + mine is her2neu positive. my husband has breast cancer in his ancestory too. breast cancer is very common + there are a lot of different types, but i’m glad to know for sure, i don’t have that kind with 85% chance of ovarian cancer. i’m glad i was tested, + i recommend you test to so you can make informed decisions.

  7. Laurie says:

    “irrational guilt” – oh yes! This post really spoke to me.

  8. Sarah says:

    I knew in my heart I had the gene before I got tested; I mean, I was fourth generation in my family to have breast cancer! great-grandmother right on down to me. My mother and aunt also tested BRCA1+. But my sister did not test positive. It took her two years to be ready to go for testing; she was a newlywed and wasn’t prepared to make decisions based on a possibly positive result just then.

    One thing, though; if you are BRCA+, your daughter is not the only one who may have inherited the gene mutation…your son is just as much at risk. Men can get breast cancer, too. I have twin sons and I pray every day that I didn’t give them the genetic mutation.

  9. My mother did not want me to get tested, because of insurance considerations. But once I got cancer, I did not wait. I got tested right away. Because:

    Knowledge is Power.

    The more knowledge I have, the more educated I become, the better my decision making abilities. I don’t want to be afraid and I don’t want my kids to be afraid.

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