Women with breast cancer gene

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JackieS
JackieS Member Posts: 1

I am looking for women who have been tested for the breast cancer genes and/or women who have a history of breast cancer in their family and are deciding whether or not to be tested.  For anyone that has been tested, I would be honored to hear about your experience if you are willing to share.  I am also interested to hear what are the determining factors to decide whether or not to be tested.  Thank you.

Comments

  • BethNY
    BethNY Member Posts: 2,710
    edited October 2008

    Jackie you should check out www.facingourrisk.org the whole site is dedicated to BRCA.

    I was tested due to being diagnosed at a young age, and of ashkenazic Jewish descent. This was back in 2004 when I had to go to a genetic counselor, but now, my breast surgeon does them right in her office.

    I was negative, and because of that, insurance would not cover my sister having the test even though she fits the criteria by insurance standards.

    Myriad does provide help for people that cannot afford to take the test in certain circumstances.

  • nash
    nash Member Posts: 2,600
    edited October 2008

    I was also tested due to young age and Ashkenazi Jewish descent. My father, who was Jewish, died of pancreatic cancer, which is often BRCA related. My mom, who was not Jewish, died of breast cancer. The docs all thought I'd be BRCA positive for sure, but it came back negative. I did have one doc tell me I probably carry some sort of BRCA mutation that hasn't been discovered yet.

  • lisettemac
    lisettemac Member Posts: 213
    edited October 2008

    I was tested because I was dx at age 39 and had no family history (meaning, I'm adopted).  So, it was recommended that I get the BRCA test.  I was relieved to be negative.

  • wackyjackie
    wackyjackie Member Posts: 669
    edited October 2008

    Jackie S,

    I have the same name...Jackie S...S being for "Sassi".   Anyway, I was dx at 46 and had bilateral mast., chemo rads and I'm on tamoxifen.  I went to a genetic counselor this past summer(at the recommendation of my onc.) and even though I didn't have a lot of odds in my favor, she recommended I get the test and, luckily, my insurance covered it.  Thank goodness I was negative.  But just as Nash above, they told me there are mutations that are undiscovered and I could carry it.  My daughter is 21 yrs old and my main concern was about her.  She will have to be checked starting ten years before my dx (35 yrs. old).  The counselling was very informative and the test itself was just a simple blood test.  Good luck.

    Hugs, Jackie

  • infinityscircle
    infinityscircle Member Posts: 2
    edited October 2008

    My mother had her lump removed. Now she is under going treatment. She just got her BRAC test results and it was positive. I went to the doctors about a month ago when i felt a lump in my breast, they did a mammogram and I showed them the discharge I am having from my breast. It was almost like they had a no big deal attitude about the discharge. I'm 36 and now that they are telling my mom she has to have a double mastectomy I have become worried that they have maybe overlooked something with me!!! I'm scared and feel like maybe I am not saying the right things to these doctors for them to take me seriously. Does anyone have any advise for me?   

  • Makratz
    Makratz Member Posts: 12,678
    edited October 2008

    Dear Infinityscircle,

    Go and get a second opinion.  Knowing that your Mom tested positive, had breast cancer and the symptoms you've had, you really need to see another doctor.  This is serious and the Doctors should take it seriously.

    Good luck

  • Makratz
    Makratz Member Posts: 12,678
    edited October 2008

    Infinitysci,

    I am still thinking about you.  Have you spoken to your doctor?  Perhaps you should make an appointment with your Moms doctors, if it's possible.  That way the doctors would have 2 generations and definitely take you seriously.  I am praying for you both.

  • infinityscircle
    infinityscircle Member Posts: 2
    edited November 2008

    I finally got an appointment today and i am taking the copy of the test from my mother and hopefully they will take me seriously.  But I have taken it a step further than this doctor. I have no insurance so this why I believe they are just brushing me off.  I contacted UCLA and they have a program that my whole family, (the girls)are going to be a part of.  They are going to work with me because I of my no insurance issues. I have really no idea what the program is yet, I will keep you informed.  Being that I am so confused about all of it, I called UCLA gene clinic told them about my mother and the issues I am having and told them that I didn't know which way to turn next and the woman at the gene clinic just helped me from that point on. I just received the paperwork and I leave in 2 days to see my mother and we are going to fill it all out and send the paperwork in. The woman from the clinic has also set me up with another part of the clinic that are going to help me with the financial part as well. I am scared but I am thankful that someone is trying to help us.  They want to see my daughter who is 14 yrs. and my niece who is 5 mo. old. and they want to follow them and test them as they grow up. Thank you for everything Makraz and I promise to give you updates to let you know.      

  • Makratz
    Makratz Member Posts: 12,678
    edited November 2008

    Infinityscircle,

    I'm so glad you checked back in with us.  Having no health insurance alone is scary enough!  I'm so glad that you contacted UCLA and they are helping you!  Take whatever they give you.  I am having a gene test done next month and already filled out the paperwork.  There's quite a bit of it so make sure you include all the info that you can.  I come from a large family and had to contact many aunt's/cousins that I haven't seen in years.  It is worth it to get an accurate history of your family. 

    I know what you are going through is extremely scary but you must know you are making the right decision.  Please come back to these threads when you need support.

    Take good care of yourself, your mom and your daughter.  I will be thinking of you.  Please keep us informed with your updates.

  • EleanorJ
    EleanorJ Member Posts: 752
    edited November 2008

    I am having the BRCA test done, should have my results next Wednesday. Because of my young age (33) I wan't to know if I'm at higher risk or not. Also for my sister & my mom's sake, if I test positive, they both would like to know to be tested as well. And then the rest of the family (aunts & cousins) can all be annoyed at me for taking that test! LOL! Seriously, if it comes back +, it would benefit a lot of people to know. Now, what I found out during consultations is that if I test +, it comes from either one of my parent (I thought it would just be from my mom). So if mom tests -, then comes from dad and his family needs to be warned.

  • Makratz
    Makratz Member Posts: 12,678
    edited November 2008

    Thanks for the info, cebula.  I didn't know that.  Best of luck with the test.

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