genetic testing

twillits
twillits Member Posts: 32
in Ovarian Cancer #1
I am wondering if anyone out there has had the genetic testing done. It's the BRCA1 test. If so, did you also get the BART test done? Is it really necessary? I had the BRCA1 test done, and was told that if it's a negative result it is a good idea to have the BART test done as well. Problem is that test is not covered under insurance and is about $700 to be done. I am stressing as to whether I should do it or not. I haven't gotten the first test results back yet. It takes a couple of weeks. So I have time to decide. I will talk to my onc and see what he thinks.
If my results will be positive, I also do not know what to do.....
Anyone else have this done? What do you do?

Comments

  • Gottalovelife
    Gottalovelife Member Posts: 45
    #2
    Just had it done
    Just had genetic testing done. They called me Monday and I don't carry the BRCA 1 or 2 gene mutation, it was such a relieve to hear that, because the percentage of women who get breast cancer that have that mutation was scary. Would had to have made a major decision regarding my breast. But the main reason it is a relieve is I know that my Ovca isn't hereditary and my daughter hopefully doesn't have this to worry about. There was one more test they are waiting to hear from but they didn't think anything would come from it. Praise God it is just so good to know that my daughter doesn't have to worry about it. They didn't say anything about the BART test will have to ask whether or not I should have that done, you think they would have said something about that, if they think I should have it done regardless if insurance covers it or not, I want to know for my sake and my families sake. Will pray for good results for you and if anyone knows whether or not the BART test should be done let us know.

    Hugs and Prayers
    Cindy
  • JoWin615
    JoWin615 Member Posts: 150 Member
    #3
    BRCA 2 positive
    After my debulking surgery for ovca last year, I was advised to get the BRCA test because of the fact that my family is riddled with breast cancer. It came back positive for a BRCA 2 mutation. (I still don't know the difference between 1 and 2). What you "do" with these results depends on your age. Since I am already 68, here's what a genetics expert advised me to do: 1. Inform all my close blood relatives of my positive status, so that they can make their own decision whether or not to get tested. 2. Get intensive breast screen for myself (something every 3 months).

    What is the BART test? I have never heard of it.

    Hope tis helps.

    Cheers, Jo
  • sandyinmi
    sandyinmi Member Posts: 17
    #4
    Awaiting my results
    I was diagnosed in December, and just had my testing done last week. They tested for the three most common mutations. I am awaiting my results.

    If you're positive, you need to speak with your oncologist. There are a number of steps than can or should be taken. Options include increased surveillance, chemoprevention, and surgery. Also communication with family, etc. I was told by the counselor that she will be writing a letter addressing the results.

    Sandy
  • anicca
    anicca Member Posts: 334 Member
    #5
    BART
    From http://www.ucsfhealth.org/newsletters/primary_care_connections/june_2008/cancer_genes/index.html

    "This new technology, called BRACAnalysis® Rearrangement Test (BART), detects rare, large cancer-associated rearrangements of the DNA in the BRCA1 and BRCA2 genes, which were previously undetected by standard genetic testing called comprehensive BRACAnalysis®. BART and BRACAnalysis® were developed by Myriad Genetics Inc., the single supplier of BRCA1 and BRCA2 testing in the United States."

    I was tested for BRCA 1 & 2, and my genetic counselor was certain I had a mutation, given my terrible family history. She was able to get insurance approval for BART after the first 2 levels of testing were negative, but BART was negative too. While I was relieved that my daughters do not have to worry about the known mutations, the counselor said it is likely that there is an unknown mutation in my family. I donated sputum to an ongoing study searching for additional mutations. Results will eventually be published, but no data will be available for individuals.

    Meanwhile, a recent court ruling has deprived Myriad of their stranglehold on the test!
  • jepsj5
    jepsj5 Member Posts: 18
    #6
    BRCA
    HI! I am a BRCA 2. I think BRCA 2 have a higher risk for OVC than Breast where the BRCA 1 is higher for Breast. But a BRCA 2 has an increased risk for both. My mom who currently has OVC was tested and she was a BRCA 2 and her sister and I are both positive as well. So why did you only have the BRCA 1 test done? Or Was it the broad testing?
  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #7
    Im thinking about it
    My oncologist told me it is covered by insurance. I would re-check that.
    I have four daughters, so i am concerned that they could be at risk. I mother and sister had hysterectomies in their 20's due to endometriosis, so they have no long history with their ovaries. My aunt had breast cancer in her 30's, but it was felt it was due to DES exposure as a fetus. She also had oophorectomy and hysterectomy in her 30's due to dysmenorrhea. So I am looking in to the testing.Kim
  • lulu1010
    lulu1010 Member Posts: 367
    #8
    kimberly sue 63 said:

    Im thinking about it
    My oncologist told me it is covered by insurance. I would re-check that.
    I have four daughters, so i am concerned that they could be at risk. I mother and sister had hysterectomies in their 20's due to endometriosis, so they have no long history with their ovaries. My aunt had breast cancer in her 30's, but it was felt it was due to DES exposure as a fetus. She also had oophorectomy and hysterectomy in her 30's due to dysmenorrhea. So I am looking in to the testing.Kim

    I had the testing
    Women with BRCA 1 mutations have a 50-85% lifetime rishk of developing breast cancer, and a 40-60% lifetime risk of developing ovarian cancer. Women who have a BRCA 2 mutation have a 50-85% lifetime risk of developing breast cancer and a 15-20% risk for developing ovarian cancer. Cancers of the pancreas, prostate, and larynx as well as melanoma may also be associated with BRCA 2 mutations.
    My mother died of breast cancer which she developed while I was in utero. I developed PPC (ovarian) at the age of 57. I had the testing done. They checked BRCA 1 and 2 by the BART method. I came back positive for BRCA 2. My doctor felt that even if he was able to stabalize the ovarian cancer, I most likely would develop breast cancer and then have 2 cancers to fight. I chose to have double mastectomies. Unfortunately, before my reconstruction was completed, the ovarian resurfaced. I am now on Doxil and my CA 125 is back to 26 and I am feeling well. I will be finishing the reconstruction very soon.
    I never thought I was a person to worry too much about the breast cancer as I always had frequent screening but I must say that now I feel relief that I dont even have to worry about it. I have the expanders in and look normal. Recently took a trip to Maui and I am sure no one had a clue by looking at me what I had done.
    I have two daughters that tested negative as did everyone else that was tested with the exception of one cousin who had breast cancer 10 years ago. She has gone back on medication and is getting frequent breast screening and did have her ovaries removed.
    I hated telling my family that they may have a mutation but in the end it was a gift. If they didnt have it they didnt have to worry anymore and if they did they could take preventative action.
    I hope this helps at least one person.
  • pattysoo
    pattysoo Member Posts: 170
    #9
    testing, yes
    I think it's a good idea. My insurance paid for the BRCA tests and a clinical trial covered deeper testing of the tumors themselves. It can lead to treatment decisions. I was glad to find out that I'm BRCA negative for my daughter's and granddaughter's sakes but saw some statistics about better survival for that population that won't apply to me. Anyway, information is power so I advocate for testing.

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