Insurance coverage for preventive double mastectomy?

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Preemiemom3
Preemiemom3 Member Posts: 2
edited March 2016 in High Risk for Breast Cancer


I'm 27 I have a few b9 tumors that are still growing and some cyst , Also extremely dense Brest tissue . I have over 6 mammograms and ultrasounds and MRI . I have decided to move forward with a preventive double mastectomy my BS said she completes agrees with my decision and would do the same if she were me . My question is does insurance usually cover the surgery ?

I have very strong history for breast cancer in my family my mom,grandma,several aunts, as well cousins . All on my mother side I tested negative for BRCA but was told that doesn't many anything because there are several other genes but wasn't tested for them ..

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited March 2016

    For entirely benign issues and no identified genetic syndrome you breast surgeon would probably have to advocate for you with your insurance company.

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  • ClarkBlue
    ClarkBlue Member Posts: 170
    edited March 2016

    It appears that according to The Women's Health and Cancer Rights Act of 1998 (WHCRA), if your insurance provider covers mastectomies, it must provide coverage for reconstruction surgeries. I would most definitely get this clarified as it appears you have rights in the matter regardless of the reasoning (with the exception of breast augmentation or plastic surgery for aesthetic purposes). Good luck and let us know!

    I called my insurance company this week to get an idea of what was covered and if I needed to get prior authorization for anything. The member services rep didn't know what I was talking about and even asked me to spell "reconstruction" - seriously. So they put me on hold and told me that it was NOT covered - even following a cancer diagnosis and bilateral mastectomy. Thankfully I called my husbands work HR rep and the next day I received an email stating that due to the WHCRA law, breast reconstruction following a mastectomy is indeed covered. Can you believe that???

    I too have a strong history in my family - mom had DCIS at 46, and 2 of her sisters had it at 46 as well. I am 2 months away from my 46th birthday. I just received results that I am BRCA1 and BRCA2 negative - which is great since I have 3 daughters. When I talked with one of my aunts, her question was, "if not BRCA, than what is it???". A good question. We all live in different states and have most of our lives. The only other person that's been tested in my family is my other aunt - she had a lumpectomy 20 years ago and it came back this past year so she got tested (negative as well) and opted for a double mastectomy last summer. My mom had a mastectomy 20 years ago with no recurrence.

    I am waiting for my first surgical consult next Wed - opting for the bilateral mastectomy due to family history and my age.

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  • leaf
    leaf Member Posts: 8,188
    edited March 2016

    BRCA1 and BRCA2 are the most common single inherited genes that are affected that increase your risk of ovarian and/or breast cancer. There are many others. There are many more that will be discovered in the future. Some of the others include ATM, BARD1, BRIP1, CDH1, CHEK2, MRE11A, MUTYH, NBN, NF1, PALB2, PTEN2 RAD50, RAD51C, RAD51D, TP53. Some of these produce different patterns of different cancers. Some of these tests have just recently been released to the public. I'm sure there are many other genes that we don't know about.

    After I was diagnosed with LCIS and had my breast excision, my breast surgeon 'refused to any other breast surgery on me'. Even though my oncologist was supportive, you won't have surgery unless your surgeon is willing to do it. Before you have your surgery, I would double double check that your insurance company will cover it. Otherwise, you will have a gigantic out-of-pocket expense.

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  • Mominator
    Mominator Member Posts: 1,575
    edited March 2016

    You need to check with your insurance carrier to find if mastectomies are covered. It is easier to get the mastectomy covered if you test positive for one of the heredity cancers. However, strong family history is enough for some insurance companies.

    If the mastectomy is covered, then the reconstruction should be covered under the Women's Health and Cancer Rights Act of 1998 (WHCRA) . This link can get you started. Also, check out your own insurance company for what is covered for mastectomies. You still have to pay your deductible and co-insurance, so there will still be expenses.

    https://www.cms.gov/CCIIO/Programs-and-Initiatives/Other-Insurance-Protections/whcra_factsheet.html

    I tested positive for BRCA2, so my mastectomy and reconstruction are covered. However, my insurance company is being difficult with processing the claims due to the wrong coding and other such nonsense.

    Good luck.

    Mominator

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