Waiting For Results Of BRCA Genetic Testing

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barb3246
barb3246 Member Posts: 175
edited June 2014 in High Risk for Breast Cancer

I am a woman in my mid 40's with a strong family history of BC (Mom died at 57, grandmother diagnosed in her 20's).  I recently had genetic counseling/testing for BRCA1&2, and will receive the results of my test on Dec. 3.  I thought I was ready to find out, but I am now overwhelmed by fear and anxiety. I am a huge worrier, and the anxiety about my breasts overwhelms me. I have had 4 breast biopsies (all thankfully benign) in less than 1 year, and am being followed in the breast health center at a teaching hospital in Boston. My sister got tested last year and she is negative.

I practically have panic attacks every time I go to my breast surgeon's office for appointments or imaging, and I can barely sleep the week before these appointments because I get so nervous. I actually get a pit in my stomach when I try to do my monthly self exam, I am so afraid of what I might find.  I can't imagine the level of anxiety I would have and how I would cope if I test positive. On the other hand, I know how important it is to have this information.

All my doctors have recommended prophylactic mastectomy and oophorectomy if positive. I haven't decided on the mastectomies, but would probably do the oophorectomy, although I am really afraid to lose the protective benefits of estrogen on my heart. I have a heart condition as well, so that just stresses me out even more. I kind of feel like I am doomed with all my medical issues. If I get BC, the chemo will just damage my heart further or I won't be able to take it at all. If I get the surgeries, I lose the estrogen to protect my heart, as well as undergo surgeries which may be dangerous due to my heart condition. I have never had any surgery or general anesthesia, so of course I'm afraid about that as well. Yes I know, I'm a big baby and I'm rambling. Enough of that!

I guess I don't really have a question - I just needed to vent and hear others' opinions. I don't have any friends who have dealt with these same things to talk to, and my husband thinks surgery is very drastic (just get checked more often he says). I don't think he really understands the implications of a positive result.

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  • smithlme
    smithlme Member Posts: 1,322
    edited November 2009

    There is a web site called FORCE at www.facingourrisk.org that is dedicated to genetic breast and ovarian cancers. I found it very helpful after I found out I carry the BRCA 2 gene. I have had two different primary breast cancers before I found out I carry the gene. I've since had a hysterectomy w/BSO to try and side-step ovarian cancer...

    Linda

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  • jenamae
    jenamae Member Posts: 47
    edited November 2009

    im 21 and just had the test done and am brca1+... i was worried too, i have 2 young girls and my mother died when she was 30 from bc...but i figured worring will not help the situation just make it worse...if you are + just do what you can to stay healthy and to catch it early if it does show...hang in there

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  • barb3246
    barb3246 Member Posts: 175
    edited November 2009

    Hi jenamae,

    Thanks for the reply. I'm so sorry that you tested postive, but you sound like you have a really good attitude!  Are you planning to do any preventive surgeries?? What have the doctors recommended for you?

     Barb

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  • hrf
    hrf Member Posts: 3,225
    edited November 2009

    I highly recommend the FORCE website. There is an amazing amount of information there as well as support.

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  • jenamae
    jenamae Member Posts: 47
    edited November 2009

    they have just told me to get screening every 6 mo so if i ever do get cancer then they can catch it early and do what they need to do.

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  • barb3246
    barb3246 Member Posts: 175
    edited December 2009

    Wow - I'm surprised they didn't recommend any surgeries for you.  What kind of screenings will you do for ovarian and breast cancer?

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  • LISAMG
    LISAMG Member Posts: 639
    edited December 2009

    Jenamae,

    Who are "they" that suggested screenings every 6 months, being BRCA1 positive? I agree with barb's question and concerns for you, especially given your Mom died so very young at the age of 30. Please do not think I am being intrusive, but I sincerely hope you have received genetic counseling regarding your positive results. They are the most up-to-date professionals to guide you with decision making. Yes, you are very young, but many BRCA1 cancers have an early age onset and can be very aggressive. There are no guarantees whatsoever for early detection, especially for BRCA carriers. Are you being followed by BRCA savvy doctors? Have you considered breast MRI yet? Please reach out for information, do your own research and seek the experiences of other high risk women too, they can be your best advocate sometimes. Best wishes!

    barb3246, you have a positive attitude!! Sending wishes for "No mutation detected" your way tomorrow!! Keep us posted.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Barb and Jenamae---in addition to the FORCE website, there is a TV documentary ("In the Family") that you should try and see. (Google "Joanna Rudnick" or "In the Family" and it should come up). She is a young woman who is BRCA positive----it takes you thru her personal experiences with getting genetically tested and deciding on preventative mastectomy and oopherectomy surgeries.

    Anne

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  • hrf
    hrf Member Posts: 3,225
    edited December 2009

    Jenamae, I agree with what Lisamg wrote. Based on my own personal experience as a BRCA carrier, I can tell you that surveillance doesn't always work and 6 months can make a difference between life and death. All the best....

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  • Cherries58
    Cherries58 Member Posts: 17
    edited December 2009

    Hi Barb, You probably have your results of your BRCA test by now.  I'm hoping it's neg.  I was in the same boat this summer. My mother died of bc and my older sister has had it twice. I tested positive for BRCA2.  There was no doubt in my mind I wanted the oopherectomy and bi mastectomy. It's not as bad as you imagine although it's not a walk in the park either.  I had a laproscopic oopherectomy...not that bad.  8 weeks later I had a nipple sparing bi-mast.  I have expanders that are uncomfortable but it's not nearly as horrible as I imagined. I know my body will miss the estrogen but it's worth it to me to get rid of the fear that one day it will hapen to me too.  I know it's still possible but chances are slim. And, I'm almost 4 weeks post mast and my boobs don't look bad at all.  I was barely an A and now I'm a B and may go to a C. Hang in there.

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  • far_north_friend
    far_north_friend Member Posts: 6
    edited December 2009

    All I can say to you at this point to you is:

    I had no family history.  Instead I was diagnosed this past March with

    Stage III BC , Grade 3, with 4 positive lymph nodes...

    I wish I had known 3 - 5 years ago that I was BRCA positive because there

    would have been something that I could choose to do about it to avoid what I having to go

    through now.

    You have an opportunity to know and make a choice.

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