CHEK2 Diagnosis & Insurance Denial

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CourtneyO
CourtneyO Member Posts: 4
edited March 2019 in Genetic Testing

Hello,

I am hoping someone can shed some light on this for me. I had some genetic testing done and carry the chek2 mutation. In addition, I lost my mother to breast cancer 15 years ago. I saw a breast surgeon and decided to go the route of a prophylactic bilateral mastectomy. My surgery was supposed to be in three weeks but my insurance company is denying coverage saying there isn't enough literature that a CHek2 has an increased risk factor association for breast cancer. Can anyone help with this? I am distraught at this, having thought that my anxiety was finally going to be taken care of with all of my drs appts and such. I have very dense breast tissue and some fibroids that were detected via MRI, but came back as "most likely benign but come back in six months". I am planning to file an appeal with my insurance company but don't even know where to start:(


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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2019

    Hi Courtney,

    We just wanted to reach out to welcome you to Breastcancer.org. We're so sorry to hear of your positive genetic test results, but we know others here will have some great advice for you! We hope you get some answers soon!

    You may also want to look through or post in the Employment, Insurance, and Other Financial Issues forum for some information!

    --The Mods

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  • Fritzmylove
    Fritzmylove Member Posts: 330
    edited March 2019

    Have your surgeon’s office also appeal it. I’m sorry you’re having to go through this. Insurance companies suck. From a fellow chek2 sister, I hope they approve your surgery

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  • CourtneyO
    CourtneyO Member Posts: 4
    edited March 2019

    Did you have prophylactic surgery? If you have any advice, I am happy to take it! I will also have my surgeon appeal it. Funny Ive seen the breast surgeon three times, plastic surgeon twice and had an MRI and it has all been covered. Feeling a bit deflated. :(

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  • Fritzmylove
    Fritzmylove Member Posts: 330
    edited March 2019

    Unfortunately, no. My BMX was not prophylactic. I was diagnosed in September At age 34. My dad never mentioned that his mom had breast and pancreatic cancer so I didn’t know we had a family history until I found out I had BC. After my diagnosis, I went through genetic testing which found the CHEK2 mutation. Then my dad was found to have it as well, but has never had cancer, and he’s 80. Luckily my 2 sisters don’t have it, and my brother is going for testing soon.

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2019

    I’d ask your BS for a referral to a genetic counselor. They can put a number on your risk. I have no known mutations, but my GC felt my lifetime risk was 50%. That was enough to get it covered.

    Also when I was researching a PBM, I came across the approval guidelines for said procedure from BCBS.

    My BS was not eager to do the surgery, but I politely pestered his office every Tuesday morning like clockwork to get the request into the insurance company.

    My BS also mentioned that in the long run a PBM might be more cost effective for the insurance company than high risk screening. (Except I understand that DIEP recon is very expensive.)

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2019

    I'd ask your BS for a referral to a genetic counselor. They can put a number on your risk. I have no known mutations, but my GC felt my lifetime risk was 50%. That was enough to get it covered.

    Also when I was researching a PBM, I came across the approval guidelines for said procedure from BCBS.

    My BS was not eager to do the surgery, but I politely pestered his office every Tuesday morning like clockwork to get the request into the insurance company.

    My BS also mentioned that in the long run a PBM might be more cost effective for the insurance company than high risk screening. (Except I understand that DIEP recon is very expensive.)

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2019

    Courtney, I would see a cancer genetics specialist. They ought to know the latest research that might support your surgery plans. If the genetics specialist agrees that mastectomy is reasonable with this mutation and files an appeal, I think that might carry more weight than an appeal from the surgeon. It’s not clear from your post whether you had a pelvic MRI and/or breast MRI. You could discuss the option (maybe you have already) of adding a yearly breast MRI to your screening, as this would be much more able to show anything concerning in dense breasts, compared to mammography, and this might be reassuring. I am so sorry for the loss of your mother.

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  • CourtneyO
    CourtneyO Member Posts: 4
    edited March 2019

    I saw a genetic counselor and she put the risk at37-44 without family history. My mother died of breast cancer 16 years ago and so adding that increases the risks as well Is a cancer genetic specialist different than a genetic counselor?


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  • CourtneyO
    CourtneyO Member Posts: 4
    edited March 2019

    Thanks for your reply!

    I had a breast mri with and without contrast. I’m already doing every six months for alternating mammograms and breast mris which I appreciate the extra screening on but having to be called back because of irregularities causes so much anxiety. I can’t imagine the cost of the mris either!! so you think an appeal from a counselor will carry more weight? Or is a genetic specialist different from a counselor?

    Thanks so much! Hoping to set the insurance company straight

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2019

    I would guess a genetic specialist and a genetic counselor are the same.

    I’m not sure which company did your testing, but if you felt up to it you could do another self pay test at Color.com

    https://www.color.com/t/welcome?utm_source=Google&utm_medium=cpc&utm_campaign=750180910&kw=color%20genomics&pos=1t1&mt=e&device=t&gclid=EAIaIQobChMIzZOEtNi34AIVFr3sCh2sjwVpEAAYASAAEgKxxvD_BwE

    You get to speak their genetic counselor when you get your results. It’s $199. They may have additional info on your mutation??

    I spoke to their genetic counselor and they were very helping in providing info re: genetic counselors in the city where my daughter lived.

    Best of luck. High risk screening is very onerous.

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited March 2019

    At my cancer center, there is a physician who is a specialist in cancer genetics, and working with him are some genetic counselors who have, I think, masters degrees. And they probably have someone in their section who knows just how to deal with insurance, but the doctor’s name his evaluation would be part of the appeal.

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