BRCA test positive --now what

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jsrose14
jsrose14 Member Posts: 117
edited June 2014 in Genetic Testing

I was diagnosed on January 25 with IDC after two consults one with my locals bs and one at mskk, i had thought that i had made my decision for surgery. i had my final and third consult at penn today and while driving to the appointment my local bs who ordered the brca test called and said that my brca test came back positive for the brca2 strain which is very surprising given that my mother tested negative and i dont have any close relatives on either side who have died of breast of ovarian cancer (that we know of).



At this point I am going to go with double mx with reconstruction and most likely will use dr. sataloff at penn. i am overwhelmed by the stress of now worrying about my risk of ovarian cancer but with the current tumor, i cannot do much about it right now, other than to begin making phone calls to set up appointments with gynecological oncologists. anyone have referrals for gyn onc.? or have gone thru something similar. i received one referral so far to dr. randall at upenn.



i feel like a ticking time bomb and who knows what is brewing inside me. i have a bone scan scheduled for next week and then hopefully move forward with planning the mx and recon. three weeks ago i thought i would live till i was 95 as three of my grandparents did and now i not only have bc but i now have a brca positive test that also puts me at high risk for ovarian cancer?!? even the thought of finding a separate online support group for ovarian cancer is stressful!!!



anyone who has gone thru something similar? the bs at mskk laughed at me last week and said there was "no chance" my brca would be positive given my family history---i hate that all they focus on is the numbers and when you fall into that small percentage of people who are "outliers" they are so surprised.



Anyone out there diagnosed with bc and then found out they were brca positive? if so, what was your journey like?



thanks!

Comments

  • Carlatap
    Carlatap Member Posts: 96
    edited February 2013

    Hi JSRose, I am another one that was diagnosed with cancer, and then farther down the journey I tested positive for BRCA2. I was diagnosed at age 43 with DCIS in 02 in my rt breast, then after 7 years was diagnosed with IDC, in the left breast. I had heard from so many in the medical field that I was not at risk for breast cancer, especially with my first diagnosis. But then when I had this new primary at 50, and had the triple negative tumor, grade 3, they suggested genetic counseling and testing. I had already had the lumpectomy and gone through 3 rounds of chemo. If they had tested me from the start of my 2nd diagnosis, I would have done it differently. But I was encouraged to finish chemo and go through radiation. While going through radiation, I had my oomph done. And then, a year later, I had my double mastectomy with reconstruction. I had been told there was an 85% chance that I could get it again. Twice was enough for me. My sister had already been through the journey of breast cancer as well. After I tested positive, she was tested and came out positive as well. And I am very sad to say that my 2 daughters have tested positive for BRCA2 also. They are 26 and 28 years old and are being screened every 6 months. So, after I had the oomph done, and the mastectomy I was able to breath deeper knowing I had done what I could to stop the cancer from returning. I believe that it took me me quite awhile longer to heal b/c of the chemo and radiation I had been through the year before. I am now just about 4 years out from my 2nd diagnosis, and I remain cancer free! I totally understand your stress b/c of the not knowing. I'm very sorry you have to go through this. But, I would encourage you to get your mastectomy and oomph done first so your body can heal easier. When you have these 2 surgeries done, they do biopsies on the tissue and you find out if there was anything hiding. Then when you meet with your oncologist afterwards, and have more blood work done, a decision can be made if you would need the chemo. I would n't think you would need any radiation. I hope this helps a little bit and again, I am sorry that you have to go through this.

  • Miller1353
    Miller1353 Member Posts: 84
    edited February 2013

    We have many parallels in our experiences, Jsrose. I, too, have grandmothers who are in their 90s, healthy and vibrant. My surgical oncology said that they complete a Gail model which predicts the likelihood of being BRCA+. My model showed zero percent chance of a positive result. NO family history of ANY cancer going back three generations. Well, I was positive for BRCA1. The results were faxed while I was in the surgical hold area awaiting a lumpectomy. It was a horrible, horrible day.



    The BRCA test was a game changer, of course. My initial treatment plan was lumpectomy and 5 days of radiation. It changed to chemo, mastectomy and hysterectomy.



    The early days of this journey were brutal. If I could tell you anything, it would be that it gets better. When you are forming a treatment plan, there are so variables. The fear is real, and it took awhile for me to reconcile that I was dealt a different set of cards than most.



    Fast forward to three years after diagnosis, and I am doing well. I have worked the entire time. I did 8 round of chemo, BMX, hysterectomy and reconstruction. It was not easy. I have had 15 surgeries and over 40 nights of hospitalization. I have dealt with infection, necrosis, etc. I now can get up in the morning, and my first thought is not breast cancer. I can go through the day without obsessing over statistics, and fretting over someone else's experience. This is my journey. I am not a statistic, and my outcome may be very different than others.



    Another little piece of advice from experience, is to monitor your ability to Google everything. Statistics are old, and again, your experience is unlike any other. I really terrified myself by trolling the internet.



    I hate that I am BRCA+, but it is what it is. I have two daughters, so the implications are there for them as well. My 18 year old recently requested testing. She was negative. We will test our 16 year old daugher after she turns 18, if she is interested.



    Hang in there. There are so many women who are doing well and thriving. I do not know what my future holds, but I am glad I am here today. Best wishes on your journey.



    Dawn

  • jsrose14
    jsrose14 Member Posts: 117
    edited February 2013

    Dawn. Thanks so much for your note and sage words. I have spent the entire weekend wondering if I have ovarian cancer since everything I read says brca2 has higher chance if ovarian cancer. I feel so overwhelmed with worry I cannot wait till Monday to call a gym onc to see if I can get a pelvic us.



    All of that being said I agree with you that the Internet is a scary place but at this point I have no other outlets for info and until I get to a place where I know what I am doing for tx it's so hard not it read things. My bs didn't feel that we should deal with anything other than the bc right now and I so badly want to trust that but it's so hard



    Did you do everything in one surgery? I am not even sure a gym onc will see me ASAP before I get my surgery. I have a bone scan on Tuesday and ps consult Wednesday so I am trying to focus on next steps. It's hard bc I hadn't even come to a place where I felt confident in my choice for a bs but now I feel like you. This is a game changer and I want to be at a place that overall has everything I need.



    I would love to hear more about your journey if you want to pm me.

    Thanks.



    Jill

  • IllinoisNative
    IllinoisNative Member Posts: 125
    edited February 2013

    I was diagnosed with BRCA2 after my lumpectomy.  Initially, I was concerned that I didn't have a mastectomy given my genetic results.  But my doctor explained to me that have the gene only told them the likelihood that I would get cancer.  Meaning I already got it so I didn't have to have a mastectomy since the gene had no bearing on my cancer coming back.  So I would have chosen a lumpectomy anyway.  What can I say?  I like my boobs...even though they are trying to kill me.  It's clearly an abusive relationship.  LOL!  I think if I found out I had the gene before I was diagnosed with breast cancer, I would have opted for a mastectomy.  But it made no sense afterwards since I already had it...unless you just want the piece of mind of it not returning.  But a lumpectomy with radiation has the same survial rate as those who have mastectomies.  So I have no regrets.  I didn't want the pain, recovery time, reconstruction, no feeling in my boobs, etc. when the survival rates are the same.  But it's a very personal choice.

    As to the ovaries, BRCA2 has less of chance of getting ovarian cancer than BRCA1, but they are more likely to get melanoma.  I'm 38 so my doctor told me that I would need my ovaries out prior to menopause.  Women with my gene (or mutation) tend to get ovarian cancer after age 50 (more like 60).  So he told me I have time.  Frankly, I want more time with my ovaries.  I want the protection they can provide me before they try to kill me  (I know, abusive, right?).

    Also, I had no family history of breast cancer.  Both of my parents tested negative.  They told me I had less than 1% chance of testing positive for the BRCA2 gene.  See how lucky I am?  :)

  • ttkslee
    ttkslee Member Posts: 15
    edited April 2013

    I know you posted this in January, but I am just now reading through these BRCA forums since the week I was supposed to start rads after my lumpectomy and 2 rexcisions, I found out I was BRCA1+. My rads were placed on hold, and I am now 3 weeks post total hysterectomy. The ovaries coming out were of urgent importance. I am 57, so I was finished with those body parts!! Now, I am faced with the decision of whether to proceed with the radiation or go for the mastectomy. And possibly BMX. My oncologist recommended rads since I was not DX with cancer til I was 57 and quoted an 11.4 % chance of another breast cancer. Well, my surgeon did NOT agree with those stats. He is like 25-40%. I went to a larger cancer center and saw another medical oncologist, who agreed with my breast surgeon. I am so confused. I want to believe my oncologist, but my gut says get those things,off of my chest!! But, there is also something in my mind that tries to reason that the radiation may destroy more left over cancer cells than a mastectomy!! I know the survival rate is the same, but the reoccurrence risk and contra lateral risk is the difference. I know everyone needs to be at peace with their decision, but is there ever total peace after a cancer diagnosis? I respect anyone's decision, whatever it may be. I just need to make one!! The ovary decision was easy for me, but this breast one is difficult. If the reconstruction process was not so long, this decision would be easier.

  • lemon68
    lemon68 Member Posts: 684
    edited April 2013

    Hi ttkslee,

    I am sorry to hear of your BRCA+ results. I am going to share how I feel in hopes it helps in some way. I was adopted so I was sure I was going to be +, I was negative. If I were positive I had planned on a DIEP immediately. I have read or used the cancer math and it led me to that decision, and I have or HAD ILC which is sneaky and 35% of the time bilateral. So here I am done with lumpectomy and rads, about to begin tamoxifen. Sigh.. at peace with my decision? Hell no I am not at peace in my mind. On the outside I am seem to be but inside there is a battle of fear and anxiety happening. My odds of it coming back in my rads side are 5%, MO told me very high risk in my healthy side. My challenge now is to find peace and in 6 months when I get checked if there is any question about anything or the word biopsy I do the DIEP. I am at peace with that choice. Many women play the wait and see every 6 months for years and never get it again. Its a chance we take and I think that if we can handle that keeping them is a good choice. I also see posts of women who began hating their breasts for all kinds of reasons, I dont feel that way but if I did I would have done the MX. The cliche its a personal choice is the truth and it is not a easy one to make. Go and look at the pictures of reconstruction via expanders/implants and DIEP or Tram etc.. it may help you to make a choice. I hope you can come to a choice, at peace? I am not sure but one you can accept yes!

    Take care.. xo

  • jsrose14
    jsrose14 Member Posts: 117
    edited April 2013

    I am 40 years old and just recently opted for a bilateral mx with immediate recon and also had my ovaries out at the same time. I am brca2 +. I don't regret the decision at all and even before I knew I was brca + I was still trying to decided between lumpectomy and mastectomy. Now that I am 7 weeks out from surgery I don't regret the decision at all. I think 57 is young! Three of my grandparents lived well into their 90s so you could have another 40 years left!! There are so many hard decisions but for some reason once I knew about brca it was a no brainer for me. I also have young kids and didn't want our lives to be dominated by scans MRIs tests etc. frankly I think peace of mind is in our heads (which doesn't make it invalid) but ultimately you have to do what brings you the most peace. I am currently struggling with the decision to do chemo or not. Their are so many hard decisions. I hope you find the answer that is best for you.



    Jsrose

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