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The Day I Found Out I Am BRCA2 Positive

When you think about the major tests you’ve taken in your life, which ones come to mind? Is it your driver’s license test(s), your ACT/SAT tests, a big test you aced, or failed, in high school or college? Or is it a test of the medical variety that comes to mind, such as a biopsy, bone scan or MRI?

I guess the title I chose for this post is an obvious give away about where it’s headed.

I remember that day well. There are so darn many of “those days” to remember. That day was another one of those “stand-out” days.

After my biopsy confirmed I did indeed have breast cancer, the next big piece of my particular cancer puzzle to figure out was my BRCA status. Since my mother had already tested positive for the mutated gene, the chances were 50/50 that I would as well. I was in the “thinking about getting tested” stage when cancer reared its ugly head speeding up the process for me. Cancer doesn’t allow you to think things over for too long.

I had to wait about two weeks for the test results to come back and of course, my oncologist was out of town during the week of their expected arrival. Feeling more than a bit impatient a day or two after that expected arrival date, I decided to call the clinic and unsuccessfully attempted to talk the nurse into giving me the results over the phone. She emphatically told me the results hadn’t arrived yet and I would have to wait until my scheduled appointment on Tuesday; that was Friday. I didn’t believe her for a minute. I knew the results were in and she was just following proper protocol and I told her so, but she “stuck to her guns.” More waiting.

After hanging up the phone that day, I realized on top of everything else, I had surely sounded cynical, desperate and probably more than a little annoying, but I didn’t care. I felt like I was quite literally fighting for my life.

On the following pleasant Tuesday in May 2010, hubby and I waited calmly in the exam room wondering about the next bomb shell. My oncologist slowly entered the room carrying the purple folder. If you’ve had the test, you know about the purple folder; at least it wasn’t pink.

                   

Immediately I knew from his demeanor what the results were. Actually, I knew even before he entered the room. Some things you just know. Call it woman’s intuition, or whatever else you choose, I somehow knew what the results would be.

My hubby, my oncologist and I calmly looked at the white sticker that had been attached to my purple folder. There they were. The same words I had seen on my mother’s folder; positive for deleterious mutation. The same dreaded words in the same dark bold-faced black letters as if to further emphasize my doom.

Positive for a Deleterious Mutation - I read the words over and over and all I could think of was that they sounded more like words to describe some serious mental illness. I hope that doesn’t sound offensive to anyone who has suffered from mental illness. If they do, I apologize.

We weren’t surprised, or at least hubby and I were not. We were becoming more accustomed to hearing bad news. However seeing the words written down and then stated out loud, somehow amplified their power and significance.

The results were in and they were conclusive, not even “suspicious.”

My genes were tainted. It was time to fine-tune our plan.

More on that later.

What’s a test you failed?

Do you believe in intuition?

Have you had genetic testing or counseling?

 

59 thoughts on “The Day I Found Out I Am BRCA2 Positive

  1. Wow, Nancy. Kudos to you for being such a strong self-advocate! You did the right thing by taking this test, and by failing it, you could be proactive.

    I’m sorry, though, that you failed it. It must’ve been a crushing blow.

    Yes, I believe in intuition. It was intuition that helped me save my life twice (of course, maybe I’m like a cat, so I have maybe 7 lives left!). The first time was when I found my own cancer, and the second time was when I got a prophylactic double mastectomy, against the advice of some physicians. Some laughed at me, but a biopsy revealed that my supposedly healthy breast was filled with precancerous cells.

    I hope my intuition doesn’t start failing me. How many times can one get lucky?

    1. Beth, Well, I didn’t really feel like a strong advocate at the time that’s for sure. I kind of felt like I had been backed into a corner and had to get tested. It was a blow, but I was totally expecting the positive results. I can’t believe some of your doctors laughed at you; that’s just wrong. I’m glad you went with your gut and made the right decisions for you. And look at the advocate you have become not only for yourself, but for others as well! Thanks for your thoughts, Beth. And keep going with that intuition, it’s served you well so far hasn’t it? Although, I hope you don’t need it for anything big for a long time.

  2. Nancy,

    What a great post! Thank you for sharing this. I look forward to hearing about how you “fine tuned your attack”.

    I do believe in intuition. And like Beth, intuition saved me at least once, perhaps twice during this whole cancer rollercoaster (first in getting diagnosed and second in firing my first oncologist).

    My worry now is that the daily pain that I have is altering my intuitive abilities . . . the fear of a recurrence is something that I think about often. I don’t know what to make of the daily pain that I have. I have brought it to the attention of my docs and initially it lead them to repeatedly scan me. But, now it is seen as just pain (since, fortunately, my scans all came back NED).

    Anyway, thank you for sharing your story of your BRCA testing. I am sorry that you tested positive (funny way of saying it, isn’t it? Positive?).

    I really do look forward to hearing about how you altered your plan of attack after learning of your BRCA positive status (that is when and if you feel like sharing).

    I hope you have a great rest of the week, this one sure has gone by fast for me!

    All the best,

    Lisa

    1. Lisa, I’m sorry you have so much pain. I have a fair amount of discomfort myself. Like you, I’ve been scanned and so far mine have come back NED too. Thank goodness! I’m glad your intuition served you so well. And twice, that’s amazing! I will be sharing about the fine tuning at some point. Thanks for your interest. And thanks so much for sharing your thoughts. Does your family have a history of cancer, Lisa?

  3. Wow, what you’ve shared with us is so important and powerful! As I mentioned, I am struggling with the testing for a number of reasons. It’s ironic that I’m reading about this topic today since I just had this said conversation with a very good friend of mine last night, who is also an oncology nurse. Such is the reason I’m attending a seminar next month on genetic testing/counseling. Maybe I can put some of the “I’m a failure” demons to bed. As far as test results, 1 in particular stands out in my mind, my pathology results which stated- “poor prognosis”…Kudos to you for doing this test and for sharing this with all of us. Thank you!

    Suzzann~ (aka-the ostrich w/her head in the sand)

    1. Suzzann, Thanks so much for your honest comments. I’m glad this post came at a good time for you and attending that seminar will surely help you sort things out. These are big decisions and it’s all about timing isn’t it? My timing turned out to be not all that great, but… And, you are not an ostrich with her head in the sand!! Very funny! Let me know what you decide!

  4. What’s a test you failed? My first driver’s test! I hit a cone while doing some weaving exercise.

    Do you believe in intuition? Yep. I am mostly guided by my gut with most medical decisions. If it doesn’t feel right, it usually isn’t, like when one doc told me I *needed* Taxol/Taxotere but I truly believed with every fiber of my being that I didn’t. Now, this was backed by research, too. Crazy twist of fate landed me with a new oncologist, who looked at my chart and told me, “I don’t think you need Taxol!” Aha, I knew it. And now, 7 years later, I am fine — w/o having had the drug.

    Have you had genetic testing or counseling? Yes, and I did not test positive for any mutation.

    1. Jacki, Ha! I don’t think you are alone in not passing your driver’s test on the first try! Another thumbs up on the intuition question; that’s very interesting to me. Good for you for making the decision you felt was best for you. Sometimes it can be really tough to go against the status quo. So glad you are doing well seven years out and I’m glad you tested negative. One less thing to worry about. Thanks so much for your comments, Jacki.

  5. Hi Nancy
    Thanks for sharing your story. Very timely and important!

    As my first meeting with my surgeon was winding down, she asked if I had any more questions.

    I told her I was Jewish. That coupled with my family history (mom had IBC and died in 1983) got me sent over for the BRCA test posthaste.

    Ashkenazi (Eastern European) Jews are 10 times more likely to have mutations in BRCA1 and BRCA 2 genes than the general population. Approximately 2.65 percent of the Ashkenazi Jewish population has a mutation in these genes, while only 0.2 percent of the general population carries these mutations.

    I am not a carrier for the BRCA1/2 mutations. (Guess I’ll have to check back when more are discovered…)

    As a reminder and for those who might not know, having an abnormal BRCA1 or BRCA2 gene doesn’t mean you will be diagnosed with breast cancer: seven percent of breast cancers in Ashkenazi women are caused by alterations in BRCA1 and BRCA2 (See http://www.genome.gov/10000507.)

    1. Katherine, It’s kind of funny isn’t it, you’re Jewish and tested negative and I’m not Jewish and tested positive. So much for statistics! Seriously though, the statistics are important and you make a good point about the Ashkenazi Jewish population being at greater risk for carrying these mutated genes, especially brca1 as I understand it. Also, just because you test positive for the gene, doesn’t mean you WILL get cancer, but it does greatly increase your odds. Thanks very much for your comments, Katherine. Is there a pattern of hereditay breast cancer in your family, or has it just been you and your mom? Although that’s certainly enough.

  6. Indeed, thank you for sharing Nancy. Reading your recollection of that day and experience brought up memories.

    In my case, I had wanted to undergo testing for years, but it took me years of pushing to get my siblings to agree. When I finally succeeded in convincing them, we all underwent testing together, I felt a sense of accomplishment and relief in simply getting that far. All but 2 of us tested positive for BRCA2. For me, that knowledge felt empowering. I felt like I could finally see the ghost in the room. Ugly ghost for sure.

    Thanks for writing this.
    Susan

    1. Susan, I’m wondering now how many siblings you have. You bring up an important point about how not everyone, even in the same family, wants to know this information. It’s all about personal choices. Also, I know what you mean about feeling empowered, although I didn’t feel that way at first. I like your description of the ugly ghost in the room! It’s perfect. Thanks for adding to this discussion, Susan.

  7. Thanks for your post on your experience being tested for the BRCA mutation. It really resonated with me. 3 years ago (a few months after my Dad died, though, while I inherited the mutation from him, he did not die from cancer) I tested positive for Lynch syndrome, the “deleterious mutation” linked to colon, endometrial, and lots of other cancers. I had a similar reaction to “deleterious mutation” (though my notification was over the phone! I guess being out of state gives them no choice?) and it’s been sort of a lonely road, so I just wanted to say thank you for your post. It made me feel less lonely about a very stressful process, though our deleterious mutations are not the same beasts.

    1. Caitlin, Thank you so much for commenting here and for sharing your personal experience. I’m sorry about your dad. You’re right, the road can feel lonely, but thanks to some changes, it’s no longer necessary to keep quiet about our personal genetic findings. That change is huge. Like you said, even though our mutations are not the same, sharing about them helps. I’m glad you feel less alone. So do I. That’s the whole point of all this sharing isn’t it?

  8. Nancy – thanks for sharing your story. I had my mother (she had breast cancer, along with an aunt and cousin) tested for BRCA – negative – “family history is suggestive of an inherited breast cancer susceptibility”. I do believe in intuition. As I was considering preventative masectomies I randomly came in contact with three ladies (I never brought up breast cancer – they did), one that was battling breast cancer, one that was an oncologist nurse working with breast cancer patients and the other who’s breast cancer was found when having a reduction. Three stories that were told to me as I was deciding whether to have masectomies or take Tamoxifen. I felt I couldn’t ingnore their stories (promptings) and in May 2010 I chose to have masectomies for my diagnosis of ALH. I feel I made the right choice. It was brave of you to get tested!!

    1. Valerie, Thank you very much for adding your voice to this discussion. It sounds like you do have some strong family history there, “susceptibility,” as you called it. I’m sure there are more yet to be discovered genetic links; another reason we need further research. I’m glad you are comfortable with your decsions. Good for you. Thanks for calling me brave; I’m not.

  9. When I got my results it was the day before my double mastectomy was scheduled.

    I was not surprised. Every woman in my family has died of breast or ovarian cancer. EVERY one…

    I had known I would get breast cancer since I was 16 and found my grandmother’s death certificate in my dad’s desk. I was told as a child she died of pneumonia, but the death certificate told the real story. And then I knew – I was next.

    The day I got my results just proved to the doctor what I had been saying all along (and they were not believing). And so the doctor finally agreed to give me a double. Ten days later I had the ovaries removed.

    I kind of think of it as one of those curses from the Bible, the ones pronounced on your children and your children’s children. And I wonder what someone did so long ago that brought this curse upon so many of us…

    Thanks for writing. Always thought provoking.

    1. Dianne, Wow, I cannot believe there have been that many women in your family affected by cancer. I’m so sorry. And what a sad story about your grandmother and the deception surrounding her cause of death. Based on your family history, it’s really surprising your doctor was so difficult to convince regarding your risk. Good for you for being such a self-advocate. I don’t believe in curses, but I certainly understand how you feel. Thanks for sharing your compelling comments.

    2. Nancy,
      The policy of my health plan at the time was to ask if any sisters, aunts or your mother had been diagnosed with cancer. But I have no sisters, nor does my dad. My mom is not from the affected side of the family. I am the only girl left, besides a couple of third cousins.

      They have since changes the policy to include more than two direct family members.

      I even have an uncle that had breast cancer…

      1. Dianne, Thank you for providing more insight into your family history. It’s staggering the number of cases in your family. You raise an important point. Men do get breast cancer too. I’m glad some things have changed policy wise. Thanks for sharing.

  10. Getting tested is more important now than ever (if you already have breast or ovarian cancer) because there are new therapies for which it seems to matter.

    If you tested negative years ago, it might be time to visit a genetic counselor again. My family’s gene (on my non-Jewish side) was only found 6 years ago. It was considered suspected until we have more members of my family tested (all who have tested have had it) so we got it changed.

    You CAN get it from your father (who could have gotten it from his father and so on) so it is possible to have a woman be diagnosed with cancer and to have BRCA even if she has no breast or ovarian cancer in her familial line.

    1. Teal Toes, Thank you so much for commenting. I knew sometimes it can’t be determined if a mutation exists for sure, but I didn’t realize you could go back and get retested and have the status changed. Thanks for the information. And you’re so right about the father’s side being very important to look at too.

  11. Not only do I remember my test results, I had to fight to get the test in the first place! “You don’t have any family history,” my doctor said. “No reason to suspect you’ll test positive.” No reason other than my little voice that’s never steered me wrong.

    Yes, I had the test, and yes, I’m BRCA2+ to which my doctor said, “Wish we’d known that earlier.” Duh…. No kidding!

    Listen to your little voice!

  12. My results were handled very poorly. No genetic counseling before or after. My Internist’s office handled the test. The nurse that drew my blood didn’t even know what the BRCA gene was. They all acted like I was having this really weird test that no one had ever heard of before.

    My blood got delayed getting sent out and after 3 weeks, I had to hunt it down in Utah. I was in my Internist’s office for my BMX pre-op (he was on vacation and a physician I didn’t know was filling in) when I got the results… She was looking at the computer and just blurted out, “I see you’re BRCA negative.”

    Yes, I was relieved. But her casual attitude was very off putting. (I blogged about it in my “Pre-Op Road Trip” post).
    From what I’ve heard, I am in the minority with how casually my test was handled. In the end, since I was negative, there was really no harm done. But it did piss me off!

    -Renn

    1. Renn, Your testing experience was really handled poorly! Wow! Actually, the person who drew my blood had no idea either… The delay and cavalier attitude of those directly involved with your testing is simply unacceptable, especially the person on the computer blurting out the results. I don’t blame you for being pissed off! Thanks for sharing!

  13. Thanks for sharing that day with us, Nancy. I know it’s hard to write these memories, but I think those of us going through this really need to hear from others, what it’s truly like.

    Like you, I met with a counselor and had the test after my biopsy came back positive. Despite my family history, I saw no point in being tested prior to my diagnosis. Either it would happen or not. I was never thinking along the lines of prophylatic surgery (then!). While waiting for the results, which I assumed would be positive, I debated a bilateral mastectomy vs. lumpectomy. Figuring if I was BRCA positive, the choice was made for me. I’d take the surgery and be aggressive. When my results were, surprisingly, negative, I had new issues. I was being told my risk of recurrence was lower and lumpectomy was suggested. In the end, I opted for the bilateral. I wanted no regrets.

    Being BRCA negative didn’t make me feel any better. I still considered my genes screwed up and still do. I think now, anyone with a family history of the disease should be tested. It is good to know. It puts the power in our hands to possibly change something. Great topic!

    1. Stacey, It’s interesting to me you felt there was no need to get tested prior to diagnosis even with your family history. I try not to beat myself up about not getting tested earlier; hearing your thoughts makes me feel better about that. Like you, I was told I could consider a lumpectomy if my test came back negative, so in some ways a positive result made the desision for the bilateral a whole lot easier. I admire you for having the guts to have the bilateral despite testing negative. I think you made the right decision. Thank you for adding to the discussion here, Stacey.

  14. Hi Nancy,

    Yes, that feeling of being backed into a corner is a familiar one to me. I think that sometimes being an advocate involves going through a lot of difficult experiences, but going through with whatever needs to be done anyway.

    I call myself an advocate, but I have experienced the desire to run away from it all, and I have felt backed into a corner so many times. I’m glad you did the right thing!

    1. Beth, Thanks for your additional comments. I think we’ve all wanted to run away at one time or another, trouble is, things still “catch up” with you, so running doesn’t really solve anything anyway.

  15. Nancy, great post about testing. I can’t even imagine what it was like to receive the results you did. I was recently tested for something very private and shameful (not due to my behavior), and fortunately was negative. I also got tested for BRCA-1/2 and again was negative. I guess I could say I did not pass the test when both my biopsies came out positive for breast cancer and my lymphedema was diagnosed. I do believe in intuition; mine is very strong, and as a result I’m in a better place now, freer and more ready than ever to take on new challenges. Thanks as always for sharing your story.
    XOXO,
    Jan

    1. Jan, I guess we all have tests in our lives of various types don’t we? I’m sorry you had to have one recently you felt so uncomfortable about, but I’m glad it was negative. It seems many of us do believe in intuition and use it as a guide. I’m glad you are feeling ready to take on all that lies ahead for you. I know you’ll be just fine. Thanks for your comments.

  16. Nancy,

    This is an amazing post. Your line about “deleterious mutation” is classic.

    I am curious though about the distinction between BRAC 1 and BRAC2 and what additional steps (removal of ovaries?) are recommended. I trust you’ll be writing about these?

    Thanks for sharing this,
    Jody

    1. Jody, Thank you for reading and commenting. As far as I can remember the two are both variations or mutations of two specific genes. Everyone has these two genes, but people like me have a mutation which does not allow the gene to properly do its job. As far as the ovaries, yes, I blogged about that in an earlier post this past spring if you’re interested. Many women who test positive are encouraged to have their ovaries removed at some point. I chose to do so as well.

  17. Thanks for sharing your story. I found out 8 years ago, when I was 26, that I inherited the BRCA 2 mutation. It was a terrifying time. Testing was somewhat new and it felt like no one had even heard of this. Within a 3 year time period, my Mom and 3 of her sisters were diagnosed with breast cancer. Their doctors suggested a family study. In 8 years, there has not been a day I haven’t had this looming in my mind. I know that I must make some difficult decisions in the very near future.

    1. Meagan, Thank you so much for sharing about your situation here. It is all overwhelming at times isn’t it? I’m sorry your mom and her three sisters have been diagnosed. I understand your worries and know it’s a difficult thing to have this always looming in your mind. I’m sure you will ultimately make decsions that are right for you. Get informed and trust your instincts. Keep me posted on what you decide. Good luck.

  18. I too failed! I tested positive for the BRCA2 mutations in January after my mother was diagnosed with breast cancer 1 year earlier. My mom, my grandmother, my grandmother’s twin sister, and my great grandmother all had breast cancer with my grandmother being the only one who died from it. My grandmother’s other sister died from pancreatic cancer and I know that I am now at higher risk for that, albeit much lower risk than breast and ovarian cancer. I am at the stage of deciding what, if any preventative measures to take. I am glad I know, but I hate the decisions that I now have to make.

    My testing was ok. I met with a genetic counselor and given my history, I was not surprised to get the results, but I actually had a felting moment of “maybe I tested negative” when the counselor showed up at my appointment with out the NP that she had stated would be there if I tested positive. I don’t think that the implications of the results settled in until a while after I got my results. I was on a 2 mile run one night and started crying in the middle of it. Now it’s something I keep thinking about. I will make a decision, soon, but only after I feel comfortable with doing my research.

    1. Amy, I’m sorry you did indeed test positive. It’s a lot to absorb isn’t it? The decisions you make from here on out are really big ones, but remember they are yours and yours alone to make. Good luck as you think things through. Keep me posted on what you decide and thanks for sharing about this personal issue.

  19. Dear Nancy

    I just stumbled on your blog by chance as I was searching on people personal experiences with having brca positive and what to do next.

    I was diagnosed with breast cancer on 25 May 2012 and had a lumpectomy done. Due to strong family history, I insisted on the genetic testing and here in Sydney, the results can take up to 4 – 6 weeks. My other roller-coaster ride was my oncologist said I need chemotherapy as my cancer is Grade 3. I decided to have the Oncotype DX testing done and that is another 2 weeks of waiting for the results. Finally I did get some good news as I was classified as low recurrence rate and so I don’ t have to go through chemotherapy.

    Back to the genetic testing. My geneticist was quite positive that my results will be negative because of my race and being hormone receptor positive.

    I was like you and I told him to let me know as soon as possible so I could make arrangement to start radiation therapy. I got the phone call from his nurse to make an appt for me for Mon, 16 July. I started to worry. Maybe news is not so good.

    Saw him on Mon and yes, you can tell from his body language that the news is not so great. Yes, I am positive for brca2.

    Now I am just reading up as what to do next. Bilateral mastectomy with or without reconstruction or just vigilant monitoring. I thought I was getting my life back as I could see the light at the end of the tunnel. But at this stage there is a slight bend in the tunnel and I need to ride past this to see the light.

    Thank you for allowing me post this and I feel better already.

    Also thanks for sharing your story with us.

    Best Regards to you

    1. Ivy, I’m so sorry about your diagnosis and also about your BRCA+ status. It’s a lot to take in isn’t it? Give yourself some time to process the information and sort things out. You will make the decisions that are best for you. I’m really glad you stumbled upon my blog too. I hope it helps in some small way. Remember you aren’t alone. Sharing helps everyone. Good luck and stay in touch.

  20. Dear Nancy

    After much reading and talking to my oncologist, I have decided to have the bilateral mastectomy and salpingo-oophrectomy (gee, finally I can spell this long word).

    I am now at peace with myself and I am happy with my decision. I will going for the surgery on Mon. Now I can see the light at the end of the road and I don’t want anymore surprises!!!

    Best Regards
    Ivy

    1. Ivy, Thank you so much for giving this update. I’m glad you are at peace with your decisions, that’s so important. Good luck with the surgeries. I will certainly be thinking about you. Let me know how things go and if there’s anything I can do to help. My best.

  21. Dear Nancy

    Thanks for your kind thoughts. Surgery went well and I am home already. Spent 4 days in hospital and the drains came off before I got discharged from the hospital.

    Will just concentrate on recovery now.

    1. Ivy, I’m so glad the surgery is behind you and that you are home resting and recovering. Take your time and be gentle with yourself. Definitely concentrate on recovery right now. My best to you and please keep in touch.

  22. My maternal grandmother had breast cancer at the age of 65 (she died of a stroke a few years later -not the cancer). My mother was diagnosed the FIRST time at age 60 in 1977. At the time the process was, after finding a lump, she had a mammogram which was “suspicious” and scheduled for surgery. She found out it was cancer when she woke up, pur her hand to her chest and realized her breast was gone. Three years later the process was repeated. My mom survived for 22 years but had 10 more reocurrences prior to her death. She even went through chemo at age 80. I was 47 when I was diagnosed in 1996. The BRCA testing was not available then. I had had a mammogram in August of 1995 which was clear. I found a lump the end of March in 1996, went to my awesome Breast Cancer clinic where, in one day, I had a mammogram, ultrasound and needle biopsy. By 10 AM the next day I had the results. It was an agressive cancer because it had already spread to the lymph nodes but I opted for a lumpectomy and node removal. I am still here 16 years later with no reocurrence. But 2 years ago I went through an ovarian cancer scare (fortunately just a scare) and had my ovaries removed. The gynecological oncologist asked me why I had not had the BRCA testing done. My response was that I had always assumed i MUST have it given my family history but then realized it was something I needed to do for my daughters and grandchildren. So YES I do have the defective BRCA2 gene. Now I have been researching what this means to me personally and wondering about doing prophylactic bi-lateral mastectomy. I am currently 64 and in basically good health – not sure what to do. Sorry about the long post – just needed to get it out.

  23. I am so glad to have found this sight and read many of the post, I too
    have been diagnosed with breast cancer 7 1/2 years ago. I had
    shared with my doctor that a couple of my realitives on my dads side fof the family had breast cancer but he never mentioned genetic testing . I of course didnt know of such a test. Last year my sister was dagnosed and by that time two more cousins who were also sister had been diagnosed a couple years prior. Her doctor who was
    also my doctor suggested DNA testing but only after her sugery which
    was a lumpectomy. She tested positive for BRCA2. She choose to just get tested every six months because she didnt want to go through the pain gain. IF she had just been told before she would have had them both removed. Now after all these years and passing the 5 year mark that they say lessons your risk of getting it back and feeling positive I was told by her counsler I needed to be tested and my daughter too. My daughter went first and praise the Lord she was negative. I wasnt so blessed I was positive. Now I face what descision to make. Its been a rough week for me. I go to talk to counslors next week to see what they suggest. I so dont want to ever go through chemo and radiation again so I feel like having my breast removed with reconstuction and hysterectomy is my best bet even though I know it doesnt mean it want still come back. I am just worried about being off work (money) and the pain. How bad is it someone thats been there? I KINDA FEEL CHEATED THAT I WASNT GIVEN THE TEST BEFORE I HAD THE LUMPECTOMY SO I WOULDNT BE AGONIZING OVER THIS NOW. They should give you a dna test after a cancer diagnosis if you have other family members with this cancer so no one has to go through this awful decisions once again. Also now my 17 year old son is fearful and has to be tested when he is 18 if he chooses to.
    PLEASE PLEASE PRAY THAT HE DOESNT CARRY THIS GENE.

    THANKS FOR LETTING ME FIND THIS SITE AND BEING ABLE TO EXPRESS MY THOUGHTS. GOD BLESS YOU ALL.

    1. Lisa, I’m sorry you’re grappling with all of this; it’s an awful lot. There is help out there. For a place to start, please visit the site Facing Our Risk of Cancer Empowered. You’ll find good information there and plenty of links. I’m glad to hear your daughter tested negative. What a relief that must be. I’m glad you found my blog too and hope you find it helpful. Good luck with everything.

  24. Nancy thank you for responding back to me.

    Just wanted to let you know what is going on with me now.

    I went to my gynocologist to schedule getting a complete hysterectomy and scheduled it for monday August 26, 2013. I also went to my surgeon who did my lumpectomy almost 8 years ago
    To talk with him about my DNA results and a mysectomy. He wanted me to get a MRI first so I did so. The MRI shows something on my right breast So they wanted to do a ultra sound and mammagram and a biopsy. I went the morning of my hysterectomy surgery to get it done because I want to know now instead of waiting for days to heal from surgery to go, but they took so long they didn’t have time to do the biopsy so now I have worried for days about what the results will be on that and my gynocologist said my ovaries looked bad when he got them out and is getting them tested too. I will be going for the biopsy Tuesday Sept.3 just hope I get results pretty fast because this waiting is terrible. I am going to have my breast removed anyway but just hate the c word and how far along can it be if it is and if it’s just localized. Well I know it could be nothing and I hope and pray that is the case so much. I wanted to know if I had the gene so I could prevent all this but I might be to late and it really sucks. I am strong though and I’m ready to fight if it is . I have God iin my corner and he promises not to put more on us than we can handle. Please pray for me that it isn’t cancer and if it is we can get it in time.

    1. Lisa, It’s good to hear from you again. I’m sorry for all your worry and anguish. The waiting can be torture I know. I will be thinking of you on the 3rd and beyond. Hoping for the best for your son too. It might turn out he is not a carrier. Please keep me posted. My best to you and thanks for sharing.

  25. Hi Nancy! I’m so happy that I found your blog! I also tested positive for the BRCA2 gene. At first the news was overwhelming, I worried endlessly. Now that it’s been a few years, I accept it. I can’t change it, I have to live my life because I am profoundly aware of just how precious every moment is and tomorrow is never promised. Worry is like a rocking chair, it gives you something to do but it doesn’t ever get you anywhere.

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