Paying out of pocket for bmx and delaying reconstruction

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

Hello,

I Iive in NJ and my HMO will not pay for a prophylatic bmx and reconstruction. I have 6 family members with bc. My mother was dx at 48 and died at 53. I am negative for Brca 1 and 2. I am thinking of having a nipple sparing bmx and delaying the deip flap for financial reasons. I would appreciate any help you might give me. I am open to going out of state for surgery if this is feasible. Thank you so very much!

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  • LuvRVing
    LuvRVing Member Posts: 4,516
    edited April 2012

    I am not sure that any health insurance provider would pay for a BMX without some sign of breast cancer or pre-cancerous condition.  Yes, if it's in one breast they will normally cover the prophy for the other.  That's not your situation.  I understand your fear of developing BC, but personally, I wouldn't have a BMX "just in case." 

    My BMX bills were at least $50,000, maybe more (surgery, anesthesia, pre-op and post-op care, hospitalization, etc).  And I expect my DIEP surgery to run at least $100k when all is said and done.  And no surgery is without its own life-threatening risks - blood clots,  infections, etc. 

    nd then there is the irreversible loss of sensation. 

    I'm not even sure you'd find a surgeon willing to perform the surgery without a medical reason. 

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  • Pointvalue
    Pointvalue Member Posts: 146
    edited April 2012

    Thank you for responding to my post. I have an appointment on the 24th with a specialist. I know another option is Tamoxifen.However I am concerned with the side effects. Hopefully my new doctor will beable to give me new insite. Thank you again.

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  • LISAMG
    LISAMG Member Posts: 639
    edited April 2012

    Pointvalue, I respectfully disagree with the previous poster. I had preventative surgery based on family history alone with no insurance problems. I know dozens of other BRCA negative women who did the same. Many surgeons and geneticists will also agree that with a significant family history of BC cases, surely there is an un-identified genetic component other than BRCA1/2 responsible for so many women affected in the same family.

    BIGGER question...Has any affected family member had BRCA testing to identify a possible  family mutation???

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  • Cyn0619
    Cyn0619 Member Posts: 63
    edited April 2012

    Have you tried filing a grievience with your insurance? You have a strong family history. Before doing surgery I would try to fight insurance. When I checked into hospital I was given a $87k bill that did not include mess labs over $20k to anathesio,ogist and various other charges. Luckily my HMO is paying it but they have tried denying me care and I've filed grievances and won. Ask dr to work on this with you to provide medical documentation. Wishing you lots of luck!

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  • cp418
    cp418 Member Posts: 7,079
    edited April 2012

    Yes, there most certainly are strong family hx of breast cancer who test BRCA negative.  However, it appears BRCA is the test most commonly done and then you are shown the door. You may try to get insurance to pursue these additional tests.  I believe the reference lab that does the test is located in MD (maybe).  Given your very strong family hx maybe push for extra screening.  I recall in news CHEK2 and PTEN were coming alot in breast cancers articles.

     http://ghr.nlm.nih.gov/condition/breast-cancer

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

    pointvalue-------while I can completely understand your desire for the preventative surgery,  it is really important to realize that there are many more potential SEs from major surgery (PBMs and reconstruction) than there are from tamoxifen. Despite all the SEs listed, most women tolerate tamox well with hot flashes being the most common SE. (it does have more serious SEs, blood clots and endometrial cancer, but those are very rare, and more common in women who are sedentary or who smoke).(also, you can take daily baby aspirin (if OK with your doctor) and have yearly transvaginal US to monitor both the uterine lining and the ovaries). the surgery has various SEs such as the potential for bleeding, infection, delayed healing, numbness, scarring, pain; all things to be considered when making your decisions.

    I am high risk due to LCIS (a stage 0, in-situ, non-invasive bc) diagnosed over 8 years ago and my risk is further elevated by family history of bc (mom had ILC). I do high risk surveillance of alternating mammos and MRIs every 6 months, took tamoxifen for 5 years, and now have been taking evista for 3 years. PM me if you'd like to talk--I've been dealing with is a long time!

    Anne 

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  • Del11
    Del11 Member Posts: 944
    edited April 2012

    The original poster has obviously made her decision about wanting the surgery, even going so far as to delay reconstruction for it.  I think we should respect that decision, assume she has thought through all the options and chosen the best path for her.  What she needs help with is getting insurance to cover it based on family history alone (most do).  Trying to talk her out of it is not helpful.

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  • Pointvalue
    Pointvalue Member Posts: 146
    edited April 2012

    Thank you so much for responding to my post! I feel I am in good company. This is a lonely process and I am glad I found this board. The truth is there is no right or wrong treatment here. I respect all of you and the decisions made regarding your dx. My aunt who had bc and passed away last year from leukemia had testing done. Her tests came up inconclusive. I am emotionally spent with the worry and the testing that comes with a strong family history. Perhaps if my mother survived I would seek a different avenue. Her death tore my family apart. Today would have been her 71st birthday. Iam a mother of three beautiful child and married to my high school sweetheart. Although my children never new their grandmother they too have lived under this cloud of uncertainy. I do not burden them with my worry.

    Thank so very much for answering me! I know now that I am not alone. :)

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