BRCA-2 -- Should I have a bilateral masectomy?

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KeukaMaid
KeukaMaid Member Posts: 10
edited August 2016 in Genetic Testing

I'm 50 yrs old, have the BRCA-2 gene, had an ooperectomy last summer, recently had an MRI and Mammogram -- the mammo was clear - the MRI showed a 1-1/2 - 2 cm long shadow in the duct area - I had an MRI-guided biopsy -- still not sure if it's cancer - was recommended to have a surgical biopsy to find out - I'm considering a bilateral masectomy no matter what the diagnosis is but am overwhelmed with the decisions - should I do it? should I do reconstruction right away - should I use muscle/fat tissue from my own body vs. implants - should I go to a local hospital once I've spoken to patients who have had a similar procedure done - or should I go to a Cancer Treatment Center nearby or to a hospital in NYC????? Any suggestions???

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  • golfgirl
    golfgirl Member Posts: 20
    edited June 2010

    KeukaMaid -  Alas,  no one can really answer these questions for you.  You have go with your gut feelings and what you think is best for you.   I was 55.  Felt my own lump.  Diagnosed via biopsy in left breast.   Had BRCA testing and was BRCA-2.   For me,  I chose to have a bi-lat with immediate reconstruction using implants.  Had oopheretomy 1 year later.    I chose bi-lat because with BRCA you have a much higher chance of later getting cancer in the remaining breast.   I chose implant recon because it has much less chance of complications and the recovery is much easier.  I'm very happy with results.   I also wondered whether I should temporarily move back north to go to Hopkins, but I really had great doctors with whom I had a wonderful rapport here in Florida.  Although it wasn't a Cancer Center, the doctors where fairly young (i.e. current training in the latest techniques) and had practices that were exclusively with BC  (i.e. lots of experience).    You need to find doctors that you are very comfortable with even if you do choose a Cancer Center or major city hospital. 

     best of luck to you.

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  • KeukaMaid
    KeukaMaid Member Posts: 10
    edited June 2010

    Thank you, golfgirl.  I have been wondering which type of masectomy is "safer" as far as the surgery and long-term.  I thought using the muscle from your own body might be "safer" than implants which are a foreign substance and which might break/tear -- but I think the surgery for using the muscle is longer and more complicated -- I'm going to talk to a woman who had the surgery done using her muscle so I can ask her how that went -- I've heard of implants hardening - could you tell me what type of implants you used and if you have had any problems with them?

    I appreciate your feedback.

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  • KeukaMaid
    KeukaMaid Member Posts: 10
    edited June 2010

    One more thing - I met w/my doctor today and tomorrow I'm consulting with a surgeon to do a 1-day surgical biopsy of the mass that was found - so I'll have to schedule that -- then I have to wait to find out what it is.  It's very unsettling to wait and wait to find out news that will change your life.  I'm pretty nervous about having a major surgery since I've been lucky so far and haven't needed major surgery. 

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  • kt57
    kt57 Member Posts: 425
    edited June 2010

    KeukaMaid:  

    Breathe --- deep breaths--   You have time to decide what you want to do.   Yes, this is scary as h$ll.   First, find out what, if anything, you are dealing with -- there is a good chance that area is not cancer.    If it is, you will have other decisions to make and options to consider --- and time to research and decide what is best for you.

    I found out I was BRCA2 after treatment for bc. I was diagnosed at 51 -- had a lumpectomy with SNB, chemo and radiation.  Am now on arimidex and had my ovaries out.   With this treatment, research shows my chance of recurrence of this cancer is about 5%, new cancer in the treated breast about 11% and new cancer in the unaffected breast about 20% -- this is based on the treatment I have had and getting my first bc after age 50.   I have chosen surveillance -- MRI annually and Mammo every 6 months, at least for now.    

    I have also researched all the possible options for prophylactic mastectomy and reconstruction and have a pretty good idea of what my plan would be if I change my mind.   And I have done that in a well thought out manner -- not in the throws of fear and anxiety over diagnosis with bc.  It helps to have a very thoughtful, measured med onc who makes recommendations based on sound research. 

    I have a board friend here who learned of her BRCA2 8+ years ago -- first bc 2 years ago, second bc a year ago - she opted for lumpectomy and rads the first time, lumpectomy, chemo and rads the second time and no mastectomy -- her team of experts agree with and support her decisions.

    Mastectomy doesn't protect 100%.  You will find people here who go through PBM and recon and get recurrence or new bc in the axilla or remants of breast tissue.   Personally, I cannot imagine going through major surgery and extended recovery, only to get cancer again.      

    So, you have time to read every board here, talk to medical experts (oncologists and genetics counselors, plastic surgeons), read research to help you make a well thought out choice.  

    Prayers to you that your biopsy shows nothing..... 

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  • golfgirl
    golfgirl Member Posts: 20
    edited June 2010

    KeakaMaid -  I'm glad that ivorymom posted her reply.  Her choices were completely different from mine and she is just as happy with her choices as I am with mine.  It underscores just how important it is to do your research and homework and then decide what's best for YOU.   The thing that's best for you is whatever you feel in your gut is right for you.  

    To answer your original question to me.. I have Mentor Memory Gel implants and have had no problems.   

    best wishes to you

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  • EstherMSKCC
    EstherMSKCC Member Posts: 45
    edited June 2010

    Dear KeukaMaid,

    I'm sorry to hear that you are facing these difficult decisions about your care. I'm an employee of Memorial Sloan-Kettering Cancer Center and came across your post requesting more information about prophylactic mastectomy and reconstruction. I am writing to share a few resources that you may find useful as you gather information about this topic.

    The National Cancer Institute's web site offers a good overview:

    http://community.breastcancer.org/forum/112/topic/redir.aspx?C=21b9baa091fc414095e3db07e370aaee&URL=http%3a%2f%2fwww.cancer.gov%2fcancertopics%2ffactsheet%2fTherapy%2fpreventive-mastectomy

    The American Cancer Society has a page with comprehensive information about reconstruction:

    http://community.breastcancer.org/forum/112/topic/redir.aspx?C=21b9baa091fc414095e3db07e370aaee&URL=http%3a%2f%2fwww.cancer.org%2fdocroot%2fCRI%2fcontent%2fCRI_2_6X_Breast_Reconstruction_After_Mastectomy_5.asp

    And Memorial Sloan-Kettering's web site offers some good educational materials on this topic:

    http://community.breastcancer.org/forum/112/topic/redir.aspx?C=21b9baa091fc414095e3db07e370aaee&URL=http%3a%2f%2fwww.mskcc.org%2fmskcc%2fhtml%2f95053.cfm

    http://community.breastcancer.org/forum/112/topic/redir.aspx?C=21b9baa091fc414095e3db07e370aaee&URL=http%3a%2f%2fwww.mskcc.org%2fmskcc%2fhtml%2f95956.cfm

    http://community.breastcancer.org/forum/112/topic/redir.aspx?C=21b9baa091fc414095e3db07e370aaee&URL=http%3a%2f%2fwww.mskcc.org%2fmskcc%2fhtml%2f88141.cfm

    I hope this information is useful and wish you the best of luck as you decide what is best of you. -Esther

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  • EstherMSKCC
    EstherMSKCC Member Posts: 45
    edited June 2010

    For some reason my links are corrupted  in my post. I'll send you a private message with the message and hopefully that will go through OK. -Esther

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  • kittycat
    kittycat Member Posts: 2,144
    edited June 2010

    I have the BRCA1 gene. I had a bmx with tissue expanders.  It was a little tough, but I was able to handle it.  I got re-diagnosed with bc 8 months after my bmx. It is very rare for this to happen.  I'm also triple negative. 

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  • tnt
    tnt Member Posts: 23
    edited June 2010

    This really does suck i am 56 and u are only 39 i feel really bad that this is your second time around .Thinking about you and wishing u the best.It is a  tough road.

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  • cassou1
    cassou1 Member Posts: 31
    edited June 2010

    brca1 positive. doing alot of reading and research with my sister so i canprepare myself with to have bu\ilateral mastectomy or not. helps me to read everyones stories and what you all have gone through.  if and i decide to have the surgfery, probably won't have reconstruction.  met with the plastic surgeon here in the desert, his comment to me was "reconstructution would  look better if i had a flatter stomach".

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  • Georganne
    Georganne Member Posts: 75
    edited June 2010

    Hi. I am BRCA 2 positive. I did have a hysterectomy and ovary removal in 2007. In March 2009, I had a bilateral mastectomy and began reconstruction with tissue expanders. I used silicone implants and just had my final nipple tatoos done in March. I am DONE. It was a challenge, but I am thrilled with my results.  I had all of my surgeries because I was told by teams of specialists in Pittsburgh Pa  (Magee Women's Hospital) that this was the best way to retain my health. I did have what were called pathalomas in the milk ducts of my left breast, but not cancer yet.  I decided to have the surgeries because in my family, ALL of the women on my mom's side have had breast or ovarian cancer and have died. I'm 49 now, and did not want to risk the seemingly inevitable. This IS as others have said a personal choice and you must decide what is best for you. God Bless You!!!!!

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  • hrf
    hrf Member Posts: 3,225
    edited June 2010

    I'm BRCA2+    First dx was TN and I did lumpectomy, chemo, rads. All my docs recommended bmx which I refused. Then I had a second primary .... ES+/PR+ .... in my lymph nodes this time even though I was being watched carefully .... everyone pushed me to do bmx and I still had to do chemo and rads again. It was awful. I know nothing is 100% but considering the outcome, it would have been unlikely for me to get second dx if I had had the bmx the first time. But I did the best I could. I didn't feel I had any choice regarding bmx. You should check out the FORCE website. I found it very helpful because it specifically deals with BRCA stuff.

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  • pas
    pas Member Posts: 55
    edited August 2010

    Hi, I'm sorry to hear that you were diagnosed after your bilateral.  How did you find that?  I often wonder if it's possible.  I was diagnosed with TN 2005 and in 2009 found out I was brca2 positive so I went ahead and even though I had a lumpectomy on the breast back in 2005, I opted for an oophorectomy and bilateral mastectomy....How are you doing?

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  • disharma17
    disharma17 Member Posts: 3
    edited August 2010

    Hi - I've just received positive test results for BRCA-2 gene mutation from my fathers side.  My father had male breast cancer at 60 and then on other breast 70.  His sister died from it in early 40's.  I am considering bilat ms as a preventative measure (never had a mammo even)  but wonder if you can tell me what the recovery from the op is like?  I have two small kids and need to be agile for them so i would need support from family but need to let them know for how long?  Also, what things can you and can't you do after the op.  I do not want reconstructive surgery at all.

    Thx

    Deborah

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  • disharma17
    disharma17 Member Posts: 3
    edited August 2010

    Hi - I've just received positive test results for BRCA-2 gene mutation from my fathers side.  My father had male breast cancer at 60 and then on other breast 70.  His sister died from it in early 40's.  I am considering bilat ms as a preventative measure (never had a mammo even)  but wonder if you can tell me what the recovery from the op is like?  I have two small kids and need to be agile for them so i would need support from family but need to let them know for how long?  Also, what things can you and can't you do after the op.  I do not want reconstructive surgery at all.

    Thx

    Deborah

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  • disharma17
    disharma17 Member Posts: 3
    edited August 2010

    forgot to say - i just turned 39 years old

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  • chrissy66
    chrissy66 Member Posts: 1
    edited August 2016

    Hi I also am 50 and just learned I am BRCA2 positive-I went for a MRI & it was clear-I was planning or at least strongly thinking of having a double mastectomy-removal of my ovaries and tubes have been done-I am looking for info from others who have done the preventive mastectomy-thanks in advance-

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2016

    Hugs to you All. It is a very difficult, and personal decision. You may find this section contains some helpful information:

    What to Do if Your Genetic Test Results Are Positive.

    Glad you found this amazing community to help guide you through your decisions.

    Warmly,

    The Mods

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