BRCA1 gene mutation

Heatherbelle
Heatherbelle Member Posts: 1,226 Member
in Breast Cancer #1
I had genetic testing a while back & got my results that I am positive for the BRCA1 gene. This upsets me most because I have two young, beautiful, spunky little daughters. My mom had breast cancer also, and her mom died of ovarian cancer when she was 52. I have my appointment with my gynecologist the first week of July to set up a complete hysterectomy - ive already had my tubes tied so I'm done having babies. I have an appt with the genetic counselor on July 11 to discuss this further. I know it's a good thing that I know, so that my daughters can be as proactive with their health as I have been , but it's still a really crappy thing to find out :( Anyone else have any info regarding being positive for this gene mutation?
Thanks & *hugs*
Heather

Comments

  • New Flower
    New Flower Member Posts: 4,294
    #2
    Heather
    Heather,
    I am very sorry, you got the news which mother do want to hear. Please do not loose hope, there is a chance that your daughters are not having it.
    Your Mom also needs to be checked for this mutation. I was told that ovary removal is a must for this mutation because it is avery difficult to detect at early stage.
    Sending you a bug hug.
    New Flower
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #3
    I am being tested July 20th
    In the past they were only testing some of those who had tripple negative breast cancer for this gene mutation. However the NCCN began reccomending the test for all with triple negative breast cancer. I have 3 daughters and a son and would like to insure that if I have the gene they know the ramifications of this.
  • BMS
    BMS Member Posts: 127
    #4
    BRCA gene
    I had the tests done as well, and am grateful that mine was negative. I was surprised when my MO wanted me to have it since there is no history of BC in my family, except for me, and I have no sisters or daughters. He said it was because they would monitor me differently going forward if I had it, and because of my ancestry (Ashkenazi Jews), there is a higher percentage of reoccurrence if I had it.

    I am sorry for your news, but it's better for your daughters to know the potential than not. Good luck and we're always here to talk to!

    Bonnie
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #5
    Heather, I think that even
    Heather, I think that even tho the news sucks, it's really good that you did the testing. I think it's better to have the information and knowledge, then you can make decisions accordingly. And your lovely daughters can do the same.

    ...I'm waiting for my results to come in.

    Hugs,

    Linda
  • aysemari
    aysemari Member Posts: 1,596 Member
    #6
    Oh Heather.....
    this news just SCUKS!!! I can only imagine how you must feel with
    your two beautiful daughters, not the kinda news anyone wants to
    give.

    I don't know what to say other than, I know what a strong woman
    you are and what an exceptional example you set for your daughters.

    Hugs,
    Ayse
  • carkris
    carkris Member Posts: 4,553 Member
    #7
    Gabe N Abby Mom said:

    Heather, I think that even
    Heather, I think that even tho the news sucks, it's really good that you did the testing. I think it's better to have the information and knowledge, then you can make decisions accordingly. And your lovely daughters can do the same.

    ...I'm waiting for my results to come in.

    Hugs,

    Linda

    I was told that parp
    I was told that parp inhibitors work in TNBC withthe mutation. a promising new therapy.
  • laughs_a_lot
    laughs_a_lot Member Posts: 1,368 Member
    #8
    carkris said:

    I was told that parp
    I was told that parp inhibitors work in TNBC withthe mutation. a promising new therapy.

    I think you may be right
    I think you may be right on that. At least with one of the BCRA gene mutations but not with those who do not have the gene mutation. There has been a lot of researh in this area but I am not sure if I know the latest.
  • poplolly
    poplolly Member Posts: 346
    #9
    I wanted to have the test,
    I wanted to have the test, but my insurance has a deductable and I just can't fit in one more bill. I hope to eventually have it done; my mother had breast cancer and lung cancer; my aunt had breast cancer; my father had kidney cancer,,so I feel like a walking cancer factory right now. I have typed up the family history of cancer for my daughter and son (my husband has had colon cancer and prostate cancer) so my son and daughter can take this to their doctors. And of course I will be insisting that they have specific tests every year. I certainly agree that this is the crappiest "house" I've ever lived in so far. I'm so sorry you are in the same house. It doesn't automatically mean your daughters will have the same gene; my mother had two other sisters who never had cancer at all nor did their children.
  • BLUbecca724
    BLUbecca724 Member Posts: 2
    #10
    I have the gene too
    I think you're approaching this the best way you can. And your positive attitude will be great for you kids. If you test positive there is a 1 in 2 chance that your immediate family members will also have the gene. My mom had it and my sister and I both test positive. She is having a baby Friday, c-section and will have a hysterectomy the same time. I am seeing my surgeon Thursday to hopefully be able to schedule my bilateral mastectomies. I have no children yet, and remain hopeful that I can have a baby before I have the hysterectomy.

    It's scary to think about, but if you do the surgeries it will decrease your chances by 90%. I'm here if you wanna talk. *hugs*
  • SueRelays
    SueRelays Member Posts: 485
    #11
    Hi Heather
    I just got the
    Hi Heather

    I just got the same news from my test. I was tested as this is my 3rd primary cancer in 3 years! So now at least I know I can blame it on someone hahaha!
    I have 3 daughters and feel the same way. I can deal with this stuff, but it would kill me to have to watch one of my daughters go through it. My surgeon shone the positive light on it, saying "but just think if they are tested and they test negative.....then they can think, well at least all this stuff Mom is going through isn't going to be carried over to us"...or if it is, then knowing enough to get all the early tests. This has been a real lifesaver, according to her"....so I guess, that's what we need to do...always find the positive in every situation, which, even through 3 rounds of this nasty C stuff, I'm still trying to do!!! Trying to keep my glass 1/2 full (of wine :))!!
  • cahjah75
    cahjah75 Member Posts: 2,631
    #12
    Heather
    I'm sorry that your test result was positive. I think you are doing the proactive thing by having the hysterectomy. I took the test because of my family history but was very relieved when the results were negative. The counselor did say that my gene hasn't been found yet. I'm still worried because I'm the oldest of 4 girls who each had a daughter and my daughter has 2 girls and my son has 2 girls. There may still be a gene that is carried through. My mom had a hysterectomy when she was 46 and my sister had one just before being dx with bc. Your mom may want to be proactive also. I will keep you and your family in my thoughts and prayers.
    {{hugs}} Char
  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    #13
    Hi Heather -- I am sorry
    Hi Heather -- I am sorry about your results. It is a good thing you know so you can be proactive. There are so many mutations we still don't know about. My Dr. has no idea where my bc comes from - although my great-grandmother died from it. So there must be a mutation some place? I just wish they find a cure, period!

    I just want to mention that before I had my test done for this gene, I was told that doctors now can identify this gene on the eggs so that your child doesnt carry the gene. I thought this was amazing. I tested negative, but I would have done it - I am 33 with no children. I harvested my eggs already. There are grants for this procedure out there, since insurance doesn't cover it for cancer patients. Hopefully, one day, they will. Or better yet, there will be no need for this very soon. LiveStrong helped me with mine. This information is for your daughters to know about as well.

    I want to wish you good luck with your upcoming plans. I think its a great idea that you're taking care of yourself now. No worries later, when you are older. You can be calmer knowing you did everything you had to do, and everything you could do.

    I wish you well. God bless you.
  • TxAthlete
    TxAthlete Member Posts: 5
    #14
    BRCA1 Feedback
    Heather,

    I'm sorry to hear that you carry the BRCA1 gene. Unfortunately, my family has this genetic gene too. However, you should have your daughters tested and may find that they don't carry the gene. We had 2 daughters and one had the gene and the other did not. The one with the gene unfortunately developed breast cancer in her early 30's and passed away a couple of years later. The fight was long and hard for those 2 1/2 years but just wasn't winnable. I would highly recommend a mascetomy immediately too. Once the cancer spreads beyond the breasts there is nothing that radiation or chemo can do but delay for a year or so the inevitable. One day it is my dream that other young women and their families won't experience this pain. I don't think that this will happen in your lifetime or your daughters but one day. Good luck.......
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    #15
    TxAthlete said:

    BRCA1 Feedback
    Heather,

    I'm sorry to hear that you carry the BRCA1 gene. Unfortunately, my family has this genetic gene too. However, you should have your daughters tested and may find that they don't carry the gene. We had 2 daughters and one had the gene and the other did not. The one with the gene unfortunately developed breast cancer in her early 30's and passed away a couple of years later. The fight was long and hard for those 2 1/2 years but just wasn't winnable. I would highly recommend a mascetomy immediately too. Once the cancer spreads beyond the breasts there is nothing that radiation or chemo can do but delay for a year or so the inevitable. One day it is my dream that other young women and their families won't experience this pain. I don't think that this will happen in your lifetime or your daughters but one day. Good luck.......

    My children can't be tested
    My children can't be tested until they are 18. I've already had a bilateral mastectomy but thanks for the words of encouragement.
  • susie09
    susie09 Member Posts: 2,930
    #16
    Gabe N Abby Mom said:

    Heather, I think that even
    Heather, I think that even tho the news sucks, it's really good that you did the testing. I think it's better to have the information and knowledge, then you can make decisions accordingly. And your lovely daughters can do the same.

    ...I'm waiting for my results to come in.

    Hugs,

    Linda

    I am sorry too Heather that
    I am sorry too Heather that you tested positive for this. But like Linda says, having this information in hand will hopefully help you and your daughter with any decisions that might possibly have to be made in the future.

    Good luck to you and your daughters!

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