Prophylatic masectomy

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Pointvalue
Pointvalue Member Posts: 146
edited June 2014 in High Risk for Breast Cancer

Hello,

I am new to the board. I am negative for Brca 1 and 2 genes. My mother was diagnosed at 48, and died at 53. Her sister was diagnosed at 60 and died at 70 from acute myleoblastic Leukemia. I have two great aunts on my maternal side. My paternal grandmother was diagnosed with bc at 70 and died at 73. Her sister was diagnosed at 70 and is still living after being diagnosed 10 years ago. My mother's oldest sister died from acute myleoblastic Leukemia when she was three years old. She is also the sister to my aunt who had bc and then diagnosed with acute myleoblastic Leukemia. My parental grandfather died from brain cancer at 42. With this family history my HMO will not pay for a risk reduction bilateral masectomy. I live in NJ and need help.I am exhausted and emotional drained from close surveillance screening. Can someone give an idea what this surgery will cost out of pocket with reconstruction. Thank you so much!

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  • vmudrow
    vmudrow Member Posts: 846
    edited April 2012

    Why won't they pay??????  I am negative for BRCA 1 and 2, my mom, aunt and cousin all had breast cancer and my insurance paid.  My surgeon said of course they will pay (this was before they even submitted it), because they don't want to pay for MRIs every year, more biopsies etc.  Has your surgeon tried to get it approved?  Not sure what the cost was - good luck - maybe someone on here has some other ideas.  Keep us posted, there aren't too many ladies that have tested negative for the gene but chose PBMX - I am one and have been so happy with the whole process, and the worry is gone!!

    Hugs, Valerie

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  • mkkjd60
    mkkjd60 Member Posts: 583
    edited April 2012

    Hello, my name is Mary. I live in nj also. I hear the surgery is upwards of fifty thousand dollars with reconstruction. My mom is 72 and has stage iv bc. She had an aunt that died of bc at 76. What is your personal history like? I have had one negative biopsy. No calcifications or alh or adh. I get a mammo and an MRI. I am also brac negative. I know about the anxiety with testing.

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  • lauralu
    lauralu Member Posts: 100
    edited April 2012

    I think thay the surgery will definately not cost that much. I cannot say for sure though. I don't understand why the insurance company will not pay. Have you checked into the cost? It also depends on what kind of reconstruction you want.

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  • Pointvalue
    Pointvalue Member Posts: 146
    edited April 2012

    Hello again,

    Thank you all for your comments. My insurance is Horizon blue HMO Access plus. They will only cover 50 percent if you are diagnosed with bc. I had a fibrodenoma(sp?) removed when I was 18 years old. I have an appointment with a specialist on the 24th. I live in NJ and it is my understanding that insurance does not have to cover prophylatic masectomies. I am so frustrated. Thank you so much for your support!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    My first surgery was $25,000 (mastectomy, fat grafting 1 night hospital stay) and it will be about $10,000 per subsequent outpatient surgery, I may need 2-3 more surgeries.I am BRCA1 and in Utah

    I would suggest you mention to your insurer that you would be happy to go to the State Insurance Commission.

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  • vmudrow
    vmudrow Member Posts: 846
    edited April 2012

    Hey lizdehart - I'm in Utah too.  I had my surgery almost 2 years ago at St. Mark's.  What about you?  Did you just recently have yours?   I haven't found too many ladies from Utah on this site.

    Hugs, Valerie

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited April 2012

    Oh, Pointvalue - that just stinks!

    Check out this website to see if you have any legal recourse.

    http://www.breastreconstruction.org/breast_reconstruction_insurance_coverage.html

    It's The Federal Women's Health and Cancer Rights Act of 1998

    When I was dx'd last September, I was offered a UMX on the left breast, and a lift/ reconstruction on the right breast. I figured since they would be doing surgery on the right breast anyway (and because of my family history) I requested a BMX instead. In the final pathology report, there was no cancer found in the right breast, so it was prophylactic. (But for me, it was just a matter of time.)

    When first asked, my surgeon said she wasn't "recommending" a BMX but it was "certainly an option". My radiologist breathed a huge sigh of relief when I told her my choice.

    I am so sorry you are dealing with this. I hope you find an advocate somewhere.

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  • LISAMG
    LISAMG Member Posts: 639
    edited April 2012

    NEVER give up the fight!!! Have your docs write an appeal letter for medical necessity to your insurance co. BRCA negative here too, I had my PBM in NYC almost 2 yrs ago and it was fully covered based on extensive family history using evidence based criteria by the insurance co. If u have 2 or more first line and/or second line relatives with BC, this is very compelling and most insur. co's eventually back down and pay up. Good luck!

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  • Pointvalue
    Pointvalue Member Posts: 146
    edited April 2012

    Thank you all for your wonderful responses. I think I found my guardian angel in Charleston South Carolina. I have been on other boards and I connected with someone who works in a breast center. She answered my post and was able to find out information for me that I couldn't about my health insurance. We spoke yesterday. I will keep you posted. Thank you all so very much! :)

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  • Mallory107
    Mallory107 Member Posts: 223
    edited April 2012

    I had a RX MX on my left side and then decided to do a PMX on my rt side afterwards.  I just got a bill from the nospital for $35,000.  My insurance will pay for it-there was just a mixup on the coding, but that will give you an idea of the cost. 

    Have you read the book Anti-Cancer A New Way of Life?  If not I would highly suggest it for wonderful advice on what to eat and do to avoid cancer.  And one of the worst things that you can do is stress-which it sounds like you are doing.  Anything you can do to find a way to make peace with this you should, even if it means a PMX. 

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  • brendaks
    brendaks Member Posts: 32
    edited April 2012

    Pointvalue,

    I hope you can get somewhere with your insurance company.  Have you ever had an abnormal mammogram or anything?  Sometimes if you have some hint of a higher risk of BC it will help your case to get your insurance company to pay for this type of thing.

    Also, something to be aware of is that even if your insurance company is talked into paying for the PMX, they may or may not be willing to pay surgeries or costs to treat complications associated with the PMX, such as infections, grafting, additional surgeries, home health care, etc.  Make sure you get clear info on what they will or will not pay for, for this surgery and for resulting medical care because of the surgery.  Insurance companies are getting really sneaky, and we need to stay one step ahead of them.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    vmudrow,

    I forgot I posted in this thread. Nice to meet you!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2012

    Mallory107, that sounds like an interesting read. I am an advocate for non-toxic cleaning products and skin care. I do not use pesticides or herbicides in my home and eat as much organic food as I can afford.

    Unfortunately women and men with gene mutations can live extremely "healthy" lives and still get cancer. Frown

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