BRACA tests & Ovaries

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J9W
J9W Member Posts: 395
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

good morning Ladies,  I was dxd in Aug 2009, had a mast on right side, started tamox but had to quit taking it after 11 months. So, now I do the six month split of mammo/mri. At my recent onc visit, he strongly suggested I get a BRACA test done and told me if it comes back positive he'll want my ovaries out. I am somewhat reluctant to get that test done - I don't feel comfortable with that gene info being 'out there' and don't trust an insurance company won't get the info somehow and then screw me over. Plus, I just don't want another surgery and recovery.  Am I being an idiot? Should I get the ovaries out? And if I just take them out, can't I skip the gene testing??? Or how about keeping my parts and doing CA125 blood tests or tumor marker tests - could that work? Any advice is greatly appreciated.

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  • Jelson
    Jelson Member Posts: 1,535
    edited June 2011

     Since you have a family history of breast cancer, Has anyone else in your family had the test and tested positive? If your oncologist is concerned that you aren't taking Tamoxifen, might you be a candidate for Aromasin as an alternative to Tamoxifen?  I don't know how old you are. http://www.breastcancer.org/risk/new_research/20110604.jsp  and I don't know if the guidelines for treating DCIS have changed (yet) and whether Aromasin will be recommended for pre-menopausal and menopausal women with DCIS but it might be worth asking your onc about it.

    What a dilemma - I can well understand not wanting the test and not wanting further surgery. Why don't you check out the BRACA/high risk board here on BCO and I am sure there are websites where just these issues are discussed by other women in similar positions wrestling with variations on surgery and monitoring.

    Take care

    Julie E 

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  • JAT
    JAT Member Posts: 81
    edited June 2011

    Did your doctor say why he wanted you to do the test? Is there a family history of breast and/or ovarian cancer, and are you very young?  My BS suggests that all her patients under 50 get tested. I was 43 at diagnosis, no family history of any cancer at all, but I did the test. I have 6 sisters, none with any breast issues so far (and all but one  older than me), and I have a young daughter, so I wanted to know for their sakes as well as my own.  The genetic counselor was wonderful-- did a very thorough family history before she took the blood, and even then I could decide not to do it after meeting with her.  I came back negative for the mutation but many believe there are probably some genetic mutations that just haven't been discovered yet.  It was very stressful waiting for the results (2 weeks).  I was determined to do a  bilateral even if I came back negative, but for many women this is a deciding factor in doing a uni or bilateral mastectomy.  Removing ovaries is a tough decision because it puts you in instant menopause, which at a very young age means a whole host of other issues (esp. heart and bone health).  I suggest that you make an appointment with the genetics counselor-- it's all confidential-- and chart your history and get your odds before deciding to do the blood test.  As for ovarian cancer screening, as of now  none of those tests are very reliable. I do get a pelvic ultrasound yearly, but my gyno says this doesn't really make much of difference in terms of catching ovarian cancer at an early stage, and the blood test is only helpful in post-menopausal women, but also not a reliable tool either.   ----JAT 

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  • Emaline
    Emaline Member Posts: 492
    edited June 2011

    My first surgeon recommended it, said she recommends for anyone under 50, even if there is no family history. She said you never know when that mutation is going to happen. I was not ready to consider taking my right breast yet, or my ovaries.  I ended up switching surgeons, and this one did not bring it up.  He is very big on breast conservation or maybe he just decided it wasn't necessary.

    I decided to bring it up with him come September when I see him again. I have a young daughter and 2 nieces. They need to know.  Oh and I have an older sister, so she needs to know as well. but I am fighting with her since she has still not gotten her first mammogram yet. I'm about ready to choke her.

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  • Tildymom
    Tildymom Member Posts: 32
    edited June 2011

    I am so confused.....  so does DCIS and ovarian cancer relate to each other?  I am undiagnosed  but waiting on Stereotactic  biopsy results to see if it is what they thought...DCIS.  But am also having cramping issues below and ocassional bleeding...which I had a partial hysterectomy 5 yrs ago...so I dont bleed...well, I shouldnt bleed...but have twice in the past yr.  But like I said lots of cramping.  SO, do thes two relate to each other?

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  • agada
    agada Member Posts: 452
    edited June 2011

    Hello

    I did have my ovaries removed since I had a very high number of women in my family with breast cancer.  My cousin's breast cancer progressed to ovarian cancer and my doctor was not happy with that.  My Jewish Eastern European background gave me the genetic predisposition for breast cancer.  However, my BRACA testing came back negative but other sites on your chromosome not tested for can probably lead to breast cancer.  I wish Myriad Genetics would do more research on this if they have not already.  I believe they hold the patent for the breast cancer area of the chromosome. This is by no means a slam against Myriad Genetics. 

    I am lucky as I am going through only mild menopause.  I do feel mentally better about getting my ovaries out.  I don't know what your bleeding means but going to your doctor for a check - up should make you feel better.

    Agada 

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  • Tildymom
    Tildymom Member Posts: 32
    edited June 2011

    Thanks Agada....  I have been twice to the dr with the bleeding and had an US, which they didnt see anything.  So, I am not sure what all this cramping is about...just my normal I guess.  Thaks for the info!

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