Resources for paying for Prophylactic Mastectomy/Oophorectomy?

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Sopho
Sopho Member Posts: 41
edited December 2017 in Employment, Insurance, and Other Financial Issues

I am wondering if anyone knows of resources which will help pay for Prophylactic procedures.

More info:

I was recently Dx with DCIS w/invasive ductal and papillary carcinomas of the L breast. I am currently waiting for results of genetic testing, but have a number of risk factors (ethnicity, age at Dx, family Hx, etc) making it a high chance that it will come back positive. If it does, all my doctors agree that the correct course of action would be a bilateral mastectomy and ooophorectomy.

My insurance will cover a mastectomy of the L breast since cancer was found, but my policy states explicitly that it does not cover prophylactic mastectomy or oophorectomy. We likely won't qualify for income based assistance...but even if we sell our house, cars, and most of what we own we would still not have the $ to cover the costs of of the prophylactic surgeries.

I am pretty afraid to go for the routine screening route, as none of the imaging before my lumpectomy showed the tumors.

Any help is greatly appreciated.

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Comments

  • Icietla
    Icietla Member Posts: 1,265
    edited October 2017

    The enrollment period starts soon for ACA-qualifying insurance plans for 2018.

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  • beach2beach
    beach2beach Member Posts: 996
    edited October 2017

    Hi, bad enough with a diagnosis let alone when you try to do what you think is best in the long run for your health, that ins can become such a hassle.

    I would speak with the surgeon and see what fee reduction you could get with him/her. Did you have a MRI of the right breast? Same with hospital and all its services. I would also try American Cancer Society and even local breast cancer coalitions. They sometimes have financial assistance.

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  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited October 2017

    Hi Sopho,

    A couple of things:

    1. DCIS and IDC. You said " recently Dx with DCIS w/invasive ductal and papillary carcinomas of the L breast." Once you have a DX of a "invasive ductal carcinoma" you generally stop talking about the DCIS...it still needs to come out, but the IDC is the more serious diagnosis. And (generally) whatever you and your medical team do for treatment of the IDC will be sufficient for the DCIS. If you want to mention the DCIS, I'd mention it as an afterthought, instead of leading with it. Confirm w/ your medical team that it is correct to say IDC.

    2. Is your conclusion about the coverage for a bilateral mastectomy based on your own reading of your policy? You are clearly thinking that a mastectomy for the right breast would be a "prophylactic mastectomy (which your insurance policy doesn't cover)."

    If you haven't talked with the insurance people in your surgeon's office (who get insurance company pre-approvals), I'd ask their experience with your policy/insurance company. I understand that a BMX is generally covered with a BC diagnosis in a single breast. Note that reconstruction for symmetry is usually covered. See the information about the Women's Health and Cancer Rights Act of 1998. If your insurance company is covering reconstruction on the left breast, then they may be required to cover surgery and reconstruction of the other breast to produce a symmetrical appearance. Note that this is NOT considered prophylactic surgery.

    3. If you get the genetic results you fear, you may want to check the FORCE website. But an oophorectomy might also be covered if required for systemic treatment of your BC. For instance, if you are pre-menopausal, ER+ and can't tolerate tamoxifen, you might need an aromatase inhibitor which would require ovarian suppression. While women generally start with injections, they can end up w/ an oophorectomy to avoid the periodic suppression injections. This would be something to discuss with your MO--and their insurance people.

    HTH,

    LisaAlissa

    etc: spelling

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited October 2017

    I agree with the other person, did your surgeon's office call the insurance to make the request. It's possible that what you read (or who you spoke to) considered prophylactic surgeries for patients with no BC history. F

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  • Sopho
    Sopho Member Posts: 41
    edited October 2017

    Luckily the BRCA tests came back negative, just waiting for the rest of the panel. I talked with my oncologist who said an argument could be made that they were not prophylactic procedures, but my policy clearly states that it does not cover prophylactic Mastectomys and OOophorectomys with no exceptions.

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  • Lula73
    Lula73 Member Posts: 1,824
    edited October 2017

    I'm with Peggy & Lisa in letting the surgeon's insurance people see if they can get BMX with recon approved if that's the path you wish to take. I understand what the insurance policy states however that often is referring to people who either test positive for a gene mutation or someone with a strong family history vs someone with a real diagnosis. After Angelina came forward there was a significant rise in the number of prophylactic cases. A mom at my sons school got her insurance to cover prophylactic BMX with recon for dense breast tissue without any other risk factors or BC diagnosis. That's the kind of thing your insurance is likely trying to avoid. If you're talking to your insurance company, make sure you don't give DCIS diagnosis as the lead but rather IDC (provided that's true). The treatment options for DCIS and IDC are very different and may cause issues with what insurance is willing to cover. Additionally, don't refer to any of the procedures as prophylactic - BMX with recon to achieve symmetry, ooph due to inability to tolerate tamoxifen for ER+ BC. Provided the dr will back you up on the insurance end you want to make sure your words and his are a match. As far as an oophorectomy goes, if you're ER+ and can't take tamoxifen (like me), the dr can petition for ooph or ovarian suppression so you can take an AI. Insurance will weigh the high cost of those injections vs a one & done with the ooph.

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  • Sopho
    Sopho Member Posts: 41
    edited December 2017

    After talking with our insurers... there is no way to have a prophylatic mastectomy covered. It is less of a worry as my genetic testing came back negative, but I do worry about just having the unilateral mastectomy. It looks like if I later get a reconstruction I can get a reduction of the other breast, which is a relief.

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  • MexicoHeather
    MexicoHeather Member Posts: 365
    edited December 2017

    I had a TVH with prophylactic Oopherectomy in October. It can be considered necessary, if you are ER+ as the ovaries are a key source of estrogen. Oopherectomy was the standard of care in the old days. If your insurance refuses, PLEASE change over to another plan by December 15th.

    The Women's Health Rights and Cancer Act will allow you to remove the other breast, if that is your choice.

    PS - Ask for some Pelvic Floor Therapy sessions, too! You will enjoy that.

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