BRCA 1

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sony47
sony47 Member Posts: 1
edited June 2014 in Genetic Testing

Hi. My first time to the site.  I found out today that I do test positive for the BRCA 1 gene. My Mom has breast cancer at 43 and survived until it returned at Primary Pertional Cancer (PPC) at age 66, died in August 2011 at 67.  So my OB wanted me to be tested for the gene, well not surprising to me I have it.  So now I have an apt in May to meet with a genetic doctor.  I'm sure my options A)mamograms with MRI's added or B) removal of breast with plastic surgery to prevent getting the cancer.  So what do people think of the choices?  What seems to be most practical.

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  • Del11
    Del11 Member Posts: 944
    edited April 2011
    Please visit http://facingourrisk.org to find out all about your options, resources, advice, support.  It's an invaluable resource for people like us. They also have a conference coming up in June where you can learn A LOT. I highly recommend going if you can.
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  • invisible
    invisible Member Posts: 28
    edited April 2011

    I'd encourage you to research, think and take your time to come to a decision.  While I've only had my results for 6 months, and I've already been diagnosed with a primary tumor, I've chosen surveillance over more agressive treatment choices.  I'm not ready to lose any other parts of myself despite their obvious disadvantages. 

    wishing you strength and courage as you work through this difficult process.

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  • Doodle
    Doodle Member Posts: 5
    edited April 2011

    Hi sony47:

    I think you need to take the normal precautions, get a mammogram, which will tell your dr. If you need a biopsy or MRI for further evaluation! I am glad you took the initiative to be tested - it is so Important to get this early!

    I was recently diagnosed via mammo and have had a biopsy, MRI and lumpectomy. But it is all an evolution, based on tests! Stay positive, get the appropriate tests and all will fall into place. Best of luck and stay in touch! Let us know your progress! Hugs!

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  • Del11
    Del11 Member Posts: 944
    edited April 2011

    Again, I highly recommend you visit FORCE for the latest research, recommendations, etc. related to being high risk. Having said that... recommendations for breast screening are yearly mammogram, yearly MRI and twice yearly clinical breast exam.  Surveillance for ovarian cancer is a little less clear, but will usually involve pelvic and transvaginal ultrasound once or twice a year. Some doctors also do annual CA125 test (it's a tumor marker, not that helpful if you haven't been diagnosed but it's all they've got for now).  Medical guidelines recommend oopherectomy at 40 or when you're done with childbearing.  Risk-reducing mastectomy is not in the guidelines, so if you have a doctor who's pushing it you should look for another doctor.  PBM (prophylactic bilateral mastectomy) is a personal choice, and a valid one, but so is surveillance.

    Also, invisible is correct... you have time to make a decision, so do your research and a lot of soul searching. In the meantime, follow surveillance guidelines.

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  • angelinac
    angelinac Member Posts: 76
    edited April 2011

    My doctor said that I don't need a mamogram if I am getting a MRI, is that right?

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  • angelinac
    angelinac Member Posts: 76
    edited April 2011

    Same boat here. I went to the genetics center and they just advised me right now to get appropriate bi-yearly screening. If there is anything of concern in those results then to take action, I will revist with the genetics center every year. They also asked that my maternal aunt, mom and sister took the genetic tests as well to see if they also carry the gene mutation.

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  • kt57
    kt57 Member Posts: 425
    edited April 2011

    The book "Positive Results"  by Joi Morris and Ora Gordon is an excellent reference.  A very good explanantion of BRCA and the decisions surrounding it.  

    FORCE is a valuable resource too.  There is another website - I think it's Bright Pink, for women in their 20s/30s.. previvors.

    I am doing surveillance - MRI and mammo annually, alternating every 6 months and clinical breast exams every 6 months.  This is consistent with teh American Cance Society and NCCN guidelines.   

    And, yes, take your time in making decisions...

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  • angelinac
    angelinac Member Posts: 76
    edited May 2011
    Thanks kt57, I will have to check out that book.
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  • Del11
    Del11 Member Posts: 944
    edited May 2011

    Are you getting MRI twice a year? Most insurance plans won't pay for that. The recommendation is to alternate mammogram and MRI, every 6 months. In addition to a clinical breast exam every 6 months.

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  • angelinac
    angelinac Member Posts: 76
    edited May 2011

    jeskachi, I am not sure if you were referring to me. I just strated this whole process now, I definitely need a call into my insurance to ensure I don't need anything for my bilateral biopsy and I will also check into what they will cover in regards to the screenings. Thanks for that heads up.  

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