18 year old daughter wants test

Miller1353
Miller1353 Member Posts: 84
edited June 2014 in Genetic Testing

My 18 year old daughter asked today if she could go ahead and give a blood sample to see if she is BRCA1+. I am very conflicted. Please share your experience or daughter's experience if tested early in life.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited October 2012

    Miller1353, I don't have any experience with this. However, everything I've read says women should be tested at age 25 or older. The information would have no impact on her life at this point, since she wouldn't start screening for many years even if she is positive.

    Your daughter is probably worried. Perhaps you could talk to her about having, in general, good health choices (nutrition, exercise) since no matter what her BRCA status is, those are good choices.

    Since your daughter is asking for the test, I'm assuming you're BRCA+. If you're not and your husband is not, then it would be impossible for her to carry the gene. Is she aware of this? We sometimes think our kids have more knowledge than they actually do.

    All the best.

    Leah

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  • howhm02l
    howhm02l Member Posts: 147
    edited October 2012

    Miller - such a good question. Although my daughter is only 4, I think about it often. I belong to a BRCA + group on Facebook, which is much more active than the group on here. I have really been surprised by how many 19and 20 year olds have had PBMX and ovary removal.



    Initially, I thought I would want my daughter to be tested at 18. Then I read a study about the psychological impact on young women eho test positive - the anxiety they had about dating, when to "reveal" their genetic status to a potential spouse, etc. I do not want my daughter to worry about that.



    Now, I am leaning more towards her waiting to be tested, as I did, until she has completed her family. (understanding that it is her decision) My mother was diagnosed with BC at 34, her sister was 42, and I was diagnosed with DCIS at 40. I have a friend, who is in her mid20s, whose mother is BRCA +, and my friend and her sister are both using surveillance and waiting to be tested.



    I should note that we do not have a family history of ovarian cancer, which I think would change the calculus in the decision making. Also, if women in our family were diagnosed in their 20s, that would change the decision making process.



    Knowing that the screening for BC is so good, particularly for those with family history, it is. It not necessary to know BRCA status to have that screening. I started getting mammograms at 24. Now, for those with strong family history, it is recommended a mammo every 12 months and an MRI every 12 months so that there is screening every 6 months.



    I will be interested in following your daughter's decision.

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  • fredntan
    fredntan Member Posts: 1,821
    edited October 2012

    I am brca negative- do husbandsvget tested? I have two daughters

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  • Miller1353
    Miller1353 Member Posts: 84
    edited October 2012

    I am BRCA1+. In her view, she will wonder about it whether she tests or not. She says she would rather know than wonder. I guess I can see her point. I asked why she wanted to know. She said that she would have a PBMX before she went to medical school.



    If she is not positive, it would be such a relief for her to know it. I am the first family member in many generations to have bc. I inherited the mutation from my father. She has a 16 year old sister who does not know I am BRCA+.



    When I found out I was positive for the mutation, we decided not to tell the girls until after college. One day last year, my daughter was reading thr local newspaper during October. There was an article about BRCA. She asked me point blank if my bc was genetic, and I could not lie to her. It was a split second decision, and I still do not know if it was the right one.



    I am so sorry that my girls have to deal with this. It is something I could never have imagined.



    Thanks for sharing your stories. I do not know anyone who is BRCA+. Your comments help to not feel so alone.



    I will keep you posted on what we decide. I asked her to think about it for two weeks. I have an appointment with my wonderful surgical onco in a week. I hope to get her perspective as well.



    I am not too FB savvy. If you could give me the name of the group, I will search for it.



    Thanks to all!

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  • howhm02l
    howhm02l Member Posts: 147
    edited October 2012

    The Facebook group is BRCA Sisterhood.



    A good genetic counselor will also be helpful. I will be thinking of your daughter.

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  • Ginger48
    Ginger48 Member Posts: 1,978
    edited October 2012

    Miller- I am BRCA2+. My daughters are 17 and 20. I did share my BRCA status with them when I found out. They will begin mammograms at age 25. Neither of them have asked to be tested yet.

    I would recommend your daughter meet with a genetic counselor if she seems serious about getting tested. It is heavy information to handle and there are financial considerations as well. It is recommended that people get life insurance before being tested because if you test positive you can be denied life insurance.

    Good luck with this decision!

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  • kellybx3
    kellybx3 Member Posts: 11
    edited October 2012

    Hi, I am 19 (20 in Dec.) My mom was diagnosed at age 31 w/ BC and passed away at age 36 after it mestastized to the brain. My dad isnt sure if she was ever tested for BRCA1/BRCA2, and since it happened 10 yrs. ago we will never know. So I decided I wanted to get the genetic test done. I have an appt. Nov. 3rd for the blood work, where I will sit w/ a GC and look into/learn more about my risks, and after I get the ressults they will then tell me what I should do. I decided to do this, because if you are considered "high risk," you should start prevention (mammos etc.) at age 25 OR 10 yrs. before a close relative was diagnosed (which for me would be in a year or so anyway) It took me a few months of really thinking about it before I decided to do this. And I'd rather know as early as I can, so I can do what I have to do to prevent getting BC in the future. @Ginger has a great point, you should maybe just meet w/ a GC first then as a family decide. Greatest luck to you and your daughter, and if your interested I can share my expierence w/ you about my first appt and so on so you kinda know what you'll be dealing with... let me know, my email is kellybx3@yahoo.com

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  • cheyenna
    cheyenna Member Posts: 379
    edited October 2012

    May i ask, why dont you get tested? You have had bc so it should be no problem with Insurance, your girls will not need to go through it, seems if you carry the gene the girls well as well.

    My husbands mother died of ovarian cancer 20 years ago, we dont know if she carried the gene, and will never know.. It scares me to death cause I have a daughter. I was tested at Dx and am negative, My husband will be tested as well beings his mother passed from it. I was told if my girl was to take the test and it be positive, Insurance Co will know she is high risk and she could be dropped? What do you think?

    Thanks

    Chey

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  • tmh628
    tmh628 Member Posts: 3
    edited November 2012

    I'm 23. My mom is braca 2 pos. And is a stage 4 survivor she just hit her 4 year mark. I was tested two months ago and I am braca 1 pos. My doctor expalined my options and I am getting preventative surgery. I'm already done having kids and got my tubes tied last year. So this decision is easier for me. I don't want my kids to see me go threw treatment. I'm glad I kno and I'm glad my daughter and son who are 3 & 4 will know enough to get tested early in there lives as well.

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  • Miller1353
    Miller1353 Member Posts: 84
    edited November 2012

    Thank you for sharing your story, tmh628.  It helps to hear from someone who has walked down this path at an age similar to my daughter's age.

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  • Mutd
    Mutd Member Posts: 148
    edited November 2012

    Tabby does your mother have a mutation in a different gene than yours? You wrote that hers is BRCA2. If that's the case then your BRCA1 must be from your father?

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  • Rose12
    Rose12 Member Posts: 95
    edited November 2012

    I have a question please. There is not history of breast cancer in my family. Only a first cousin on my mother's side. I was not tested for BRCA. Question is:  My niece's maternal grandmother on her father's side had breast cancer. Now her aunt(me) Mother's side) has breast cancer. Would she be able to be tested for this? I am not sure what the rules are. Does it have to be a first relative like Mother, sister etc?

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  • Beesie
    Beesie Member Posts: 12,240
    edited November 2012

    Rose, your niece's risk is probably not increased because of you and her grandmother (particularly because you are on different sides of your niece's family) but it's good to ask the questions and dig a little deeper, just in case.  I just posted with some information about genetic risk in another thread, in response to someone who asked about her daughter's risk.  The situation for your niece is quite similar.  Here's the link to my other post:  

    Topic: Worried about my 13 yr. old daughter and her risks

    I hope the information is helpful. 

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  • Miller1353
    Miller1353 Member Posts: 84
    edited January 2013

    Here is an update: My daughter was negative for my mutation! We are relieved and grateful.

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  • Sandlake
    Sandlake Member Posts: 211
    edited January 2013

    Miller, I remember the day my daughter received her negative results, it is such a relief! 

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  • Tmorrison9
    Tmorrison9 Member Posts: 13
    edited February 2013

    I am 21 years old and was tested at age 16. I tested positive for brca1 and was not expecting that at the time I was doing the test because my aunt had ovarian cancer I have no family history of breast cancer but with an 87% chance I decided to go talk with a genetic counselor. At the time I was so young I thought I had plenty of time to wait and see and I would just catch it early . My doc had me go every 6 months for a mammogram and I did self exams once a week . I deeply regret getting the test done so young because I just starte worrying every single day about if today was the day after years of bein paranoid bout it i finally decided to have prophylaxtic bilatetal masectomy at age 21 and I am very happy with my decision. I now am not worrying or stressing over this anymore I feel. Like I can live my life and be okay now . So gettin the test done at a young age can be beneficial for some but for others it just causes alot of grief . Looking bak now I wish I hadn't gotten tested til I was 25 and then gone from there but I am happy that I was able to stay cancer free beCause of this test. I think everyone will have different opinions and reasons for this test but before havin it done I would greatly think about if yu can mentally handle it everyday wondering about cancer

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