Brac test in late 60's...

Hindsfeet
Hindsfeet Member Posts: 2,456
edited June 2014 in Genetic Testing

I didn't see the need for a Brac test because I was first dx at 63. I thought if I had the gene I would have been dx in my 30's or 40's. It has been suggested by one doctor and someone else to be tested do to family history, and 4 dx's  since fall 2007. I spoke to my oncologist and she saw the need for me to have it checked. She said due to about 4 cousins, one who died at age 38, a aunt who was dx in her 30's, and other cancers in my family, plus a grandparent with European Jewish heritage, and my history of breast cancer. Also...another, my doctor brought up since, it was a factor that I had bilateral breast cancer, and that they were different cancers. My oncologist thought it was good I have it done since I have still one breast and all my plumbing...and for my daughters sake.

I was very nervous about it and I wasn't for sure I wanted to know. I went in an spoke to someone at the oncology clinic about the test. She said the gene test cost $4,000.00 and most insurance (if they pay for it), do not pay for it all. I would be responsible for part of it. So, I said forget it. I got a call back and my insurance will cover it 100% because they see me extremely high risk for the gene. This makes me really nervous. I had the blood test earlier this week. I am really hoping it is negative...not so much for my sake, but for my daughter's sake. I don't want her to have to deal with breast cancer or fear she will get it. I' sorta regret I took the test.  

Comments

  • Annette47
    Annette47 Member Posts: 957
    edited December 2013

    If you have the gene, you have the gene, whether or not you take the test.   Finding out just helps your daughter - instead of leaving her in blissful ignorance that could hurt her down the line.    Hopefully you will come back negative, but if not, that doesn't automatically mean she will be positive - there's still a 50-50 chance she won't be, unless her father also carries it.    If you do come back positive, what that means for her is that she should be tested .... nothing more until those results are in.   If she is positive, better she knows so she can make appropriate decisions about screening and risk reductions instead of being blindsided by an unexpected diagnosis.  

    (((HUGS))) I took the test myself in large part for my two daughters (ages 13 and 10).  Fortunately I was negative, but my way of thinking about it for them was simply that knowledge is power.

  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited December 2013

    Annette47 has given you good advice. If you have the mutation, you have the mutation--the test just lets you know. Why regret having it done? 

    I was one of those people blindsided with a breast cancer diagnosis, out of the blue, at age 34. It was Triple Negative, aggressive, and I had no family history. Turns out I have a BRCA1 mutation and I gave it to my daughter. She just turned 20 and she is about to have a bilateral prophylactic mastectomy and will be very vigilant about her risks for the other BRCA1-associated cancers because I gave her the gift of KNOWING she was at substantial risk. You've already had a cancer diagnosis, so how can knowing if you carry a mutation be worse than that? Even if you do have a mutation, that doesn't mean that your daughter does. And even if you both have a mutation, it doesn't mean she will definitely get cancer. 

    Also, it is an incorrect assumption that just because you were diagnosed in your 60s, your risk level is negligible. It is not. My BRCA positive immediate ancestors did not develop cancer early, and none of them had the female cancers associated with a mutation. It's also worth noting that BRCA1 is associated with pre-menopausal breast cancer and BRCA2 is more associated with post-menopausal breast cancer. That doesn't mean that they have to follow this rule, but many with BRCA2 mutations aren't diagnosed until after menopause.

    And just for clarity's sake: everyone has the BRCA1 and BRCA2 genes; it's whether or not you have a MUTATION in these genes that is the big deal. The test looks for mutations, not the presence of genes. Sure, it gets shortened to things like "BRCA1 or 2 positive or negative", but what's really meant by that is whether the person is positive or negative for a mutation in either of these genes. 

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2013

    Hindsfeet, with the fact that you've had two separate breast cancers and two recurrences, I suspect your daughter is already dealing with the fear that she will get breast cancer.  Even if she doesn't say anything to you about it.  

    So you shouldn't regret that you've had the test.  You should be proud of yourself for having test.  You are doing something proactive that will hopefully ease your daughter's mind, or possibly could save her life.  If you test positive for a BRCA mutation - which is quite possible but which is what you hope doesn't happen - that provides hugely important health information for your daughter.  At that point, your daughter can choose to be tested.  As Annette and lintrollerderby indicated, your being BRCA positive doesn't mean that your daughter will be - there is a 50% chance that she will test negative.  And if she tests negative, think about how relieved she will be and how much that will ease her mind! On the other hand, if she tests positive, she will be in a position to make decisions about what to do to manage and/or reduce her risk, whether it's joining a high risk program and getting increased screening, whether it's taking a drug like Tamoxifen, or whether it's surgery.  

    The fact is that you either are BRCA positive or you're not.  And your daughter is either BRCA positive or she's not.  Your being testing doesn't change that for either of you.  The only thing being tested changes is whether you know if you are BRCA positive or not.  If you do test positive, of course when your daughter finds out, she
    will be scared both for you and for herself. And if she subsequently finds out
    that she too is BRCA positive - and therefore very high risk to develop breast cancer - she will no doubt be very upset. But it's not the test that puts your daughter at risk.  Quite the opposite.  The risk is already there. The test simply exposes the risk and allows your daughter to do something about it.  If it turns out that you are BRCA positive, your being tested provides you, and your daughter, with the information necessary to be able to take charge of your health and make proactive decisions. And that's a good thing.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2013

    Thanks for your encouragement and info. I am fortunate that the test isn't costing me anything. My daughter and I recently visited someone, and the topic of breast cancer came up. My friend was concerned for my daughter especially since I had 4 bc dx. . I then said I just had the blood test done to see if there was a mutated gene. I was surprised my daughter took it well. Although she said she wasn't about to get a mammogram. She did find a lump under her arm pit a month a go, but said it is now smaller so it could be hormonal. She doesn't want to talk about it. Her father is a 100% European Jew. There is a lot of skin cancer on my husbands side of the family. I don't know if skin cancer is related to bc. Hope not. I never thought I had the gene, but the possibility is scary. I am going to be so happy if I'm negative for the gene.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2013

    Question: Do both parents have to have the mutated gene for your child to inherit the mutated Brac 1 or 2 gene?

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited December 2013

    No, only one parent, and if that parent has it you have a 50% chance of inheriting it.

  • DiveCat
    DiveCat Member Posts: 968
    edited December 2013

    I agree with the others, the test only changes knowledge...and the ability to do something about it. It does not change whether you have the gene or not. Your daughter likely already is aware there is a "risk" to her...and even if you are negative for BRCA-mutations she may still be at risk (she should talk to a genetic counselor, in any event). Unfortunately a negative result in your case may not mean she is in the clear. If you are positive she may still be negative...a true negative...which would be wonderful news! If you and she are positive, there are added screening options, preventative options (surgery, chemoprevention, etc) and great medical care teams out there for high risk women.  A BRCA-mutation puts one at risk of other cancers too, so even if you have had BC, it still allows higher care for other areas of concern.

    As was indicated, while early onset is one marker of a potential BRCA-mutation, it is not the only one. A high family history of BC, ovarian, pancreatic, etc, bilateral BC, ovarian and BC in same person, are all potential flags as well.

    I think it is a good idea to have taken the test, it will help clarify some things for you and your daughter, but whether your test comes back negative or positive, your daughter should talk to a genetic counselor as either result can have different implications and options for her.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited January 2014

    My oncologist said I won't know my results until early Feb. She said it takes a long time to get results back. I'm not worried. My daughter knows I had the test. There are other reasons for having aggressive cancer (4 times) after 60 such as lots of X-rays at age 12, and hormone treatment/menopause. However, I will be relieved if it is negative. I'll let you know once I know.

  • geekyknitter
    geekyknitter Member Posts: 187
    edited January 2014

    Big hugs!  It can be tough waiting.  :(

    I'm speaking from the perspective of a grown child who has not yet gotten cancer.  I think testing is a wonderful thing you can do for your daughter as well as for yourself.  As everyone has already said, if you and her have the mutation, it's there regardless of whether you test or not, but if you test, there are things you and she can do to help significantly reduce your future risks!  :)

  • lekker
    lekker Member Posts: 594
    edited January 2014

    There is a difference between genotype (presence of a known harmful genetic mutation) and phenotype (physical presentation - or lack thereof - of mutation-associated illness). Some families with a given BRCA1 mutation (genotype) present only with ovarian cancer while another might have early onset breast and another might only see prostate in their family trees (phenotypes). Yes, BRCA mutation related cancers tend to in general present young, but not always.  I know it's a very personal decision to test or not, but I feel like you've given your daughter a gift by getting tested.  

    You asked about skin cancer and BRCA. Melanoma is considered a possible BRCA cancer. Were the skin cancers in your husband's family melanoma or squamous/basal?  If the former, even if you test negative for BRCA your daughter might want to consider getting tested for the three founder mutations associated with Ashkenazi Jews. The test is only a few hundred dollars but probably convered by insurance.  If the family cancers are squamous, I've never heard of a genetic syndrome that includes those but I could be wrong.  There is a genetic syndrome that includes multiple basal cell carcinomas within an individual though. It would be in your daughter's best interest to speak with a genetic counselor even if your test comes back negative to discuss the possibility of risk conferred by her father's side. 

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited February 2014

    Lekker, thanks for your info. I saw my doctor yesterday and got the test results back. Negative! I am relieved for my daughter sake although I know my husband side she still could be at risk. I don't think she wants to or is willing to be tested. The reason, I even thought of being tested is my conversation with someone in that older women, 60 and up can have aggressive cancers. It is not just the young that are at risk for very aggressive cancers. This is because, I was dx with breast cancer 4 times in just about 5 years. I was told it could be due to possibly having the Brac gene and it could show later on in life. So, since my cancer was very aggressive, as in just a year it went from single focus to multifocal covering about a 1/4 of my right breast the surgeon thought it was strange the cancer was moving so quickly, and. she said, for whatever reason my right breast wanted to make cancer cells. Also I was tested, due to family have B.C and for my daughter sake.

    Looking back, I guess I would contribute my aggressive cancer to hormone treatment during menopause, or young adolescence x-rayed a lot due to serious lung infection (with the old x-ray machines). There is scarring on the right side of my lung from the lung infection thought at age 12 that it could be TB.

    But, my doctor wants me to go in and have another ultra sound as the two ultra sounds differ. From what I understand, the fatty lumps are growing. They want to make sure it's not cancer. I don't even check my breast anymore because I don't know the difference between fatty lumps, scar tissue, or tumor. All feels the same, and I don't want to be running to the doctor for every lump I feel. I did say to my doctor that since the Brac test is negative and two years since dx, I only want to be seen once a year. Since I am no longer at risk, with the Mx, I saw no need to see an oncologist twice a year. Then they called me and said they were concerned about the ultra sound and want me to have another one. Ug.

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