BRCA test

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ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
Hi, it's ohilly. I had my mastectomy on Feb. 21 and am on the road to recovery! I just wanted to ask the group what they thought about the benefits/disadvantages of getting tested for the breast cancer gene? I did make an appt. with a genetic counselor, but now am having doubts about the benefits of finding this out. What good will it do since I already plan to be very careful about getting follow-up care and checking myself. On the other hand, maybe there is another side I have not considered. I am worried about the expense since my insurance pays for 80 per cent of my care and we already have so many medical expenses from my surgery. My father's sister died of breast cancer, my father's brother's daughter got breast cancer in her thirties and is now doing fine, and then there's me (my father's daughter) who also got breast cancer. I should mention that my father also died of cancer (chronic leukemia). I had a complete hysterectomy, but have told there is a history of uterine cancer on my mother's side. I am also an Ashkenazi Jew (another apparent risk factor). So what do people think about the benefits/disadvantages of testing? Thanks. Ohilly

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  • hi ohilly, it sounds like maybe it would be a good idea to give the test a try. I had the test done because i am the 4th person in my family to have breast cancer. My Mom's sister died of the disease. My test result was negative. But I do know that ovarian cancer thrown into the mix does increase possibility of having the mutation. As you said, with or without the test you are going to be closely monitored for recurrance anyway. But, if you were to test positive, then others in your family could be tested also(for a much reduced fee). Think it over, but you have to do what is most comfortable for you. Good luck, Eileen
  • seof
    seof Member Posts: 819 Member
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    My Sister was diagnosed with breast cancer in 1999, died in 2003. She was tested and came out negative. She has 2 sons and a daughter. Mom had a pre-cancerous condition in her uterus prior to that...has not been tested. I have another sister who has not been tested or diagnosed. After I was diagnosed I was tested and am negative. I have 2 daughters, so I felt the test was important. In my case the negative result did effect some of the decisions we have made about treatments and surgery, since we got the testing done early on. I think I would want to know, even if it was after the fact, just to satisfy my curiosity, and to give my family information that might effect them some day. Insurance covered mine, but I think it would have been worth the price for me if it hadn't.

    You will have to do what is best for you and yours. I am glad you are doing as well as you are. seof
  • My great grandmother (all maternal side)was Ashkenazi Jewish, thought the practice was lost through subsequent generations, only to be revived by me..now the only self identifying Jew in the family. To think that the cancer is part of my legacy of choice is a little hard for me to find out..so have opted not to have the test. I feel, as you have expressed, that I will do everything I can so how would the info help. There is cancer in my family (mother, father). My daughters are already talking mammogram at 22 (twins). Don't think I could handle the news right now..maybe later I will do the test. There are something you need to decide right away and few things, thank G-d, you can put off a while. That's my take.
    Best wishes,
    Joyce
  • I agree with joyce. This is something that can wait. Get a grip on what you have to handle right now and ponder this issue in a year or so.
    However, I would suggest that even if you decide the results of the gene test are not important to you, they may be important to the future women of your family, daughters, nieces, etc.
  • phoenixrising
    phoenixrising Member Posts: 1,508
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    I think if it were me I'd want to find out. Maybe not now, but definitely at some point. There is ongoing research in genetics and breast cancer and I guess I would want to know what applies to me and what doesn't. But that is just me...I needed to know everything about my cancer. I somehow felt that the more I knew the better I would be at fighting it. But it's early yet and that info probably won't change your tx,
    so you have lots of time to decide.
    jan
  • kbc4869
    kbc4869 Member Posts: 159
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    Hi Ohilly,

    It's a personal choice. And I agree with the girls that it may not be something that you need to deal with right now.

    One thing I would like to let you know on the side of caution, as this happened to me: if you do choose to get the test, absolutely under no circumstances do you share this information with anyone in the insurance business. In my case, they called me. The woman said that she was a BC nurse and was doing a courtesy call to see how I was doing. She was from the insurance company. She could not come out and ask me the result of the test, but made many leading statements to get me to talk. Genetics testing has many implications when it comes to insurance. Who knows what they're storing in a database some where and how it may affect your family or generations to come. I hate to sound so paranoid, but they can be quite sneaky and dispecable. Just beware. The genetics staff will explain to you all these types of issues. For instance, no where in your medical records should it ever be stated that you tested positive. Tell your dr verbally so he or she is aware, but have no records on it in your files.

    Just wanted to share this with you and the others. It sure is a jungle out there!

    Take good care,

    Kim
  • bev49
    bev49 Member Posts: 42
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    Hi chilly,
    I had it done only to have the knowledge to save my daughter, and 2 graddaughters from guessing if this could happen to them someday. It also affects my sister, and her 2 daughters, so I for one wanted to know so they could take the diagnostic measures needed to keep ahead of this cancer. I was so blessed to have it test negative, and what a relief to all the women I just mentioned. So, with that said, it made us all feel so much better knowing what the genetic testing would show, as there is a family history of breast cancer, ovarian cancer, colon, and liver, so for me, it was a decision I didn't feel was a difficult one to make. This test is amazing, and also ruled out ovarian cancer which my maternal grandmother died from. It is certainly a decision that is different for each of us, but for me, I am glad to have had it done, and it was good news. Take care, always good to hear from you.
    Blessings,
    bev49
  • DAArps123
    DAArps123 Member Posts: 8
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    I had the breast cancer genetic testing because I wanted to know if my children were at a higher risk. I was pleasantly surprised that I did NOT have the BRCA1 or the BRCA2 gene mutation. IF...I had the gene mutation then it would mean that it absolutely came from my mom or my dad and that they are at a higher risk since they are still living. IF...I had the gene mutation then it would mean my daughter and son have a 50% chance of having the gene mutation. It would also increase my sisters and brothers and their kids chances. The gene testing people told me that there are MANY advances and research tests going on right now that would make gene mutation replacement an option in about 10 years which would help my kids and their kids etc... I think it would help other family members if you did the tests. Hope this helps. DeeDee
  • DAArps123
    DAArps123 Member Posts: 8
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    unknown said:

    My great grandmother (all maternal side)was Ashkenazi Jewish, thought the practice was lost through subsequent generations, only to be revived by me..now the only self identifying Jew in the family. To think that the cancer is part of my legacy of choice is a little hard for me to find out..so have opted not to have the test. I feel, as you have expressed, that I will do everything I can so how would the info help. There is cancer in my family (mother, father). My daughters are already talking mammogram at 22 (twins). Don't think I could handle the news right now..maybe later I will do the test. There are something you need to decide right away and few things, thank G-d, you can put off a while. That's my take.
    Best wishes,
    Joyce

    I was reading your reply and had a thought. I don't know if you know this, but...mammograms and sonograms don't always see cancer, especially in younger women. I'm 43 and it didn't show up on mine. My story can be found on this site under "Breast Reconstruction Questions" that I listed today. It might be better for your daughters to know whether the gene mutation is there or not. Better safe than sorry. Just my 2 cents. DeeDee