Genetic test??

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all_done84
all_done84 Member Posts: 35
edited November 2017 in High Risk for Breast Cancer

Hi there,

I am in Canada, I haven’t done too much research on genetic testing but have now heard it from my doctor and my mom. Both think it could be beneficial for me to have done.

Is it very expensive? Is it really important to have? Do I make life changes and judgement calls based off the findings (whatever they may be)?


Tiny back story... I’ve been in the doctor office a few times lately with some breast concerns. I’ve had a mammogram already, shows nothing really but that I’m over 75% density. My doctor wants to do an ultrasound next as she doesn’t like the fact we can’t see anything, though we can feel something.

I’m 33, with some family history but some I don’t know about.

My sister had cervical concerns in her earlier 20s. She had to have a spot removed and has been okay since. My maternal grandmother had breast cancer in her 40s and ovarian cancer in her late 50s. Unfortunately, we had to say goodbye to her when she was only in her 60s.

We don’t know much more then that’s as my grandmother was adopted.

Does it sound like something I should consider?

Comments

  • all_done84
    all_done84 Member Posts: 35
    edited November 2017

    Doe anyone one have any insight?

  • marijen
    marijen Member Posts: 3,731
    edited November 2017

    Hi,

    Try this link and it will take you to more links on genetic testing.

    https://community.breastcancer.org/forum/112/topic...


  • vlnrph
    vlnrph Member Posts: 1,632
    edited November 2017

    Before deciding to be tested, please talk to a genetic counselor. These master degreed professionals have the best, most updated information available and can help you consider all options. Ask your doctor for a referral or call an academic medical center for suggestions on who to see. They can tell you about cost, if any.

    Your sister's cervical lesion may have been caused by a human papilloma virus for which there is now a vaccine available intended for young people. So, that condition might not be relevant to an inherited mutation. The ovarian cancer in your grandmother, especially with her breast history, is more of a concern. I am sorry that you lost her at such an early age. You are wise to be aware of these various factors. Knowledge is power.

    Be sure to have whatever life insurance you would like to have for the future in place prior to sending a sample to a lab for assessment. (In the US, our health coverage is supposedly protected by the GINA law) Also, MRI is better at detection in dense tissue however ultrasound is an appropriate next step. Let us know how things turn out!

  • all_done84
    all_done84 Member Posts: 35
    edited November 2017

    Thank you marijan, for the links.

    And thank you for your response vlnrph. It was very hard losing my grandma so early. I remember being very young and hearing them talk about how young she was to get breast cancer. She had the lump since she was 39 but was too scared to get it tested until my mom forced her when she was 41.

    I think a lot of the concerns that my mom and doctor are having is that my grandma was adopted. So we know nothing from her side. My doctor says it can be concerning that both my grandma and my mom started menopause in their late 30s and we all started our menstral cycles between the ages of 9-11.

    This past weekend I have found out that my mothers paternal side also has history of early onset of breast cancer.

    EDIT* spoke with my mom again today and she said I miss understood her. It is 5 altogether, three aunts (one wasa great aunt of hers) and two cousins.

  • Lula73
    Lula73 Member Posts: 1,824
    edited November 2017

    with the family history you have learned, it would be a very good idea to get tested. The next question is what will you do with the information if it comes back with a mutation? If you plan to do nothing different with it, I wouldn’t do the test as it’s money down the drain. If you plan to take steps like increased monitoring, alternating mammo/MRI, or even prophylactic mastectomy/oophorectomy then definitely do the test. Knowledge is power, but only if you do something with it. I agree that you should apply for & sign off on any life insurance policies you think you may need prior to the testing as the results can increase your rate to beyond affordable or you may not be able to get any insurance at all. Even if youre single without kids, a good amount of life insurance is important as you’re planning not just for today but out to 20-30 years from now

  • all_done84
    all_done84 Member Posts: 35
    edited November 2017

    I am married and a mother of two, my son is 13 and daughter is 8. I'd like to know for them. Also, if it did show anything I would for sure be doing extra monitoring and I'm not sure on what if anything else. These past few weeks have scared me a little I've been staying off of google for the most part.

    As for life insurance, I already have an issue with that. I still can get it but may have a difficult time on what I can actually do because I have celiac disease. My doctor said that may cause a bit of an issu


  • Colleen_2
    Colleen_2 Member Posts: 177
    edited November 2017

    I am in Canada too and go for my genetics testing tomorrow so I will try to remember to let you know if there is any cost. Apparently they have found some new genes so my surgeon recommended I go in for more testing.

  • all_done84
    all_done84 Member Posts: 35
    edited November 2017

    Colleen, that is so nice of you. Thank you so much

  • Lula73
    Lula73 Member Posts: 1,824
    edited November 2017

    all done- on the life insurance, I would think celiac would raise the premium rates but not exclude you. Genes for BC would shoot premiums through the roof or exclude you

  • all_done84
    all_done84 Member Posts: 35
    edited November 2017

    Yes Lula, that’s what my doctor told me abou it too. She said that having celiac would raise it a small percentage. I had no idea about BC raising it so much.

  • Colleen_2
    Colleen_2 Member Posts: 177
    edited November 2017

    So I ended up not getting any testing done. It turned out to be a session to update all of my family history. She told me that although they are finding new genes, the ministry of health isn't keeping up. She said all she could test me for would be the BRCA 1 and 2 which we already know is not in my family. She said the only way I could get tested for the other genes was if I actually had breast cancer. She also told me that if I planned on getting any genetics testing done down the road to make sure your life insurance is up to date because she said if you come back positive with any of the genes, you won't qualify for life insurance anymore. Good luck and really think about it. Even though you might get a positive result, it doesn't necessarily mean you will get breast cancer she told me so just think about how you might feel if you do test positive and how that would affect you. Keep us updated.

  • all_done84
    all_done84 Member Posts: 35
    edited December 2017

    Thank you for getting back to me after your appt.

    I am so unsure on what I want to do. It bothers me that both my mom and doctor think I should, but I just don't know what I'd even do with the information.

    Thanks agai

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited November 2017

    This was in my email today. I did my expanded testing here.


    Hi There,


    Buy the gift of Color for a loved one, family member, or friend. This holiday, we're celebrating with 2 special offers.


    The offers are good through Sunday, November 26, 2017. Your discount will be applied automatically at checkout.

    Included in every saliva-based test is a personalized genetic report, cancer risk information and screening guidelines, and free genetic counseling to help explain the results!

    Have a great day!
    Aimee and the Color team

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