Help...Doc recommends elective mastectomy...

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Mandi322
Mandi322 Member Posts: 3
edited June 2014 in High Risk for Breast Cancer

As one with a strong family history of breast cancer, I have somehow always known that this day will come.  Luckily, it has come prior to my actual diagnosis.  My mother had a double mastectomy when she was only 31 and my maternal grand-mother also lost both of her breasts to cancer, so I seemed to be almost certain to fall into the grasps of cancer.  I have previously had two lumps removed more than seven years ago, only to have another suspicious little fellow pop up six weeks ago!  Luckily, none of my lumps to this date have been cancerous, but according to my doc, it is only a matter of time before we miss something...I have fibercistic, dense breasts and the lump removal will be a way of life OR I can have an elective mastectomy and reconstruction done at the same time.

I am okay with the mastectomy part, and relieved that I will not have to constantly worry about that monster grabbing ahold of me, but I am frightened that my insurance will not pay for this "elective" procedure.  So, my question is...How many of you have actually had success with getting an insurance company to approve this procedure?  If not, does anyone have any cost estimates so I can have a ball park figure?  Actually, any information whatsoever about this process being approved would be wonderful!

 I should add, I have a mammogram and ultrasound next Wednesday for the most recent lump.  My doctor has already said that he will be removing it, so I needed to decided whether or not I wanted to have the lumpectomy or the mastectomy...Nice, huh?  I called my insurance company today, and they were unable to give me any information other than my doctor would have to submit the claim in order to see if it would be approved.

 Thanks in advance for anything you might have to add,

Mandi

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Comments

  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited July 2009

    Most insurance companies will do a "pre-authorization" on upcoming large claims.  Your breast surgeon's office should be able to handle that for you.

    Best wishes!

    LisaAlissa 

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  • Mandi322
    Mandi322 Member Posts: 3
    edited July 2009

    Thanks so much LisaAlissa for taking the time to respond.  I have my doctor submitting the request today, however, I was just trying to get an idea of the response to expect.  It is difficult to make such decisions when insurance companies have so much control!  Gotta love the system.  Thanks again!

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  • simpsojc
    simpsojc Member Posts: 10
    edited July 2009

    Hi Mandi--have you had the genetic testing done for the BRCA 1 and 2 mutations?  Your family history is such that most insurance companies will cover it or a substantial portion of the cost.  If you carry the mutation, that adds a huge component to getting your insurance company to cover the prophylactic mastectomies.  Genetic testing can usually be accomplished including results back in just a couple of weeks through Myriad Genetics in Salt Lake City.  Ask your surgeon about getting the testing done.  Jan

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  • LISAMG
    LISAMG Member Posts: 639
    edited July 2009

    Mandi,

    Sorry you are dealing with all this heavy stuff. I agree with simpsojc from above to find out whether or not you carry the BRCA gene. Your family history is very compelling for a genetic pre-disposition.  It would be important in also knowing if you are high risk for ovca as well. If you have children, they would also have a 50% chance of having the mutation. Has your mom been tested? It would be recommended for her to test first, since she was affected, and then you would know whether or not to proceed ahead. Many insurance co's will authorize surgery based on family history alone such as what my case is, but I still have not done any surgery. You have lots of options so, do not rush and decide what YOU want. Skin or nipple sparing, implants or flap procedures,,,there are lots of choices.

    Best wishes and keep us posted. BTW, what was your pathology from previous surgeries? This may help you too.

    Lisa

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  • LJ13-2
    LJ13-2 Member Posts: 235
    edited July 2009

    If your doctor is recommending amputating your breasts and he has not done BRCA testing, IMHO it's time for a new doctor, or a second opinion at the very least.

    You have not told us your age, previous hx of false positives with mammograms, MRIs, where you are located, what kind of doctor he is, etc. More information would be helpful.

    Why did he say he wants to remove the current lump?

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  • Mandi322
    Mandi322 Member Posts: 3
    edited July 2009

    Wow, thanks guys...

     More info coming your way... I have always said that I would consider this option since I got my first suspicious lump at only 21.  I am 29 now, and my mom was only 30 when she found hers.  Back then, the doctors said that breast cancer didn't hurt (and her lump did) and she was far too young to even consider that for a diagnosis.  Six months later, she finally convinced the docs to do the lumpectomy and it was  malignant and had spread massively.  My mom does carry the gene.  She is BRCA 1 positive.  So, with her history, my grandmother and great aunts, I am sure I have the gene as well.  My insurance WILL NOT cover the testing, but after talking to my doctor yesterday, I am pretty sure they will cover my mastectomy.  Also, from what I have read, in Louisiana, if you have a mastectomy, insurance HAS to cover the reconstruction if a patient decides to go that route.  

     As for my doctor, I love him.  He does work in a breast clinic, but he doesn't actually perform the surgeries...a doctor in his practice (who I have seen several times and really like) would be the one who would perform both the mastectomy and reconstruction.  He has been performing breast surgeries for thirty plus years and is very good.  I went ahead and made an appointment with him; I can at least get another opinion and some more information before deciding.

    As for my current lump, I wanted it removed...I have this terrible fear that I will be in my mother's shoes when I find a lump.  I don't want to wait until I can't control my decisions any more.  I haven't even had the mammogram or ultrasound, yet, but he already told me that if I wanted it out, he would do so!  My previous lumps were benign, and I hope this one is too, but he did say that it felt suspicious.  But, the actual removal, is all me.  Just an instance of an attempt to control the uncontrollable.

    As for second opinions, this is the third doctor that said I should consider this...so, I feel like he is pretty spot on!  I have terribly lump breasts, and it is very hard to detect a lump.  So, I fear for the one that gets by!

     Thanks again...

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  • Beesie
    Beesie Member Posts: 12,240
    edited July 2009

    Mandi, your insurance will cover the mastectomy but not the BRCA test?  That makes no sense at all.

    My suggestion is that you do get the test - and push for your insurance to pay for it.  You say that you are "sure" you have the gene, but even with your mother being BRCA1 positive and with the strong family history of breast cancer on your mother's side of the family, the fact is that you actually have only a 50% chance of being BRCA1 positive.  

    Since you know that your mother carries the BRCA1 genetic mutation, that explains why she got breast cancer.  Given all the other BC on her side of the family, it can also be safely assumed that these other cases of BC were also caused by the BRCA1 gene.  But the BRCA genes are ones that we inherit either from our mother or our father.  So although your mother carries the gene, there is only a 50% chance that she may have passed it on to you.  If you happened to inherit this particular gene from your father, then you're not BRCA1 positive - in fact in this case, your risk of breast cancer would be no different than the average woman. On the other hand, if you inherited this gene from your mother, then you too would be BRCA1 positive and very high risk to get BC, and that would support your decision to have a mastectomy.

    As for the lumps that you've had, do you know what they've been?  Possibly fibroadenomas and/or cysts?  Both are very common and harmless types of lumps.  Having fibrocystic breasts and having lumps like fibroadenomas and cysts does not increase your risk to get breast cancer.  Of course, given your family history, it's logical to believe that there is a connection between all your lumps and all the BC in your family, but your lumps might be related to having fibrocystic breasts (which 60% of women have) and not related at all to the BRCA genetic mutation.

    So, before you make a decision to have a mastectomy or a bilateral mastectomy, I agree with the other women who've suggested that you should get tested for the BRCA genetic mutation.  Would you still want to have a mastectomy if you knew that you didn't carry the gene and your BC risk was no different than the average woman? 

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  • glanter
    glanter Member Posts: 78
    edited July 2009

    I don't see where you mention what insurance company you have but Cigna has a pretty comprehensive coverage policy that is public, the link is listed below.  Even if you don't have Cigna, it is worth a read as it includes rational for their position and is pretty straightforward.  

    http://www.cigna.com/customer_care/healthcare_professional/coverage_positions/medical/mm_0029_coveragepositioncriteria_prophylactic_mastectomy.pdf

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  • smirks44
    smirks44 Member Posts: 77
    edited July 2009

    I am BRCA2+ and had prophylactic double mastectomies with immediate reconstruction last fall.  For me the journey of surgery, complications and recovery has been difficult, but very worth it in terms of the risk reduction and the peace of mind that comes with it.  However, my body will never be the same.  These are certainly heavy decisions that we need to live with for the rest of our lives!  I hope that you will consider waiting until you have more information about your genetic status before you make any final decisions.

    To reiterate what Beesie already said, you can not be sure that you carry the gene until you have been tested for it.  You in fact have a 50% chance of having the gene, and a 50% chance of not having it!

    If you already know your mothers exact mutation you can have a site specific genetic test.  This means that you would only be tested for the specific mutation that your mother carries.  I believe that a full genetic test costs a few thousand dollars, but a site specific test is only a couple of hundred dollars.  (I live in Canada, so I am not totally sure of these numbers, but I think they are in the right ballpark).  If for some reason your insurance does not cover the testing for you, it would be worth your while to cover the cost yourself!!

    Imagine how wonderful it would be to learn that you are a true negative for this gene, and at no greater risk of cancer than most other women!! 

    Best of luck to you!!  These are tough choices....... 

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  • susan_02143
    susan_02143 Member Posts: 7,209
    edited July 2009

    If your Mom has tested positive for the BRCA gene, then your test will only cost $300. I am rather positive that insurance would cover this, but if not, it might be worth it to pay out-of-pocket. And if you don't have the money, and your insurance refuses to pay, Myriad has a fairly aggressive program to assist. I would want all the data points before having any major surgery.

    Best of luck with all you have before you.

    *susan* 

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  • taraleec
    taraleec Member Posts: 236
    edited July 2009

    Usually insurance companies will cover the BRCA test if your mother had the gene.  But remember even if you have the test, people have tested positive for the gene, but never developed breast cancer, and people who have breast cancer have tested negative for the gene.  Good luck to you.

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  • LISAMG
    LISAMG Member Posts: 639
    edited July 2009

    Most insurance co's cannot refuse BRCA testing, especially with a first degree relative testing positive. All you need is a letter of medical necessity by your doctor and/or genetic counselor. The testing will be very simplified and affordable since you already have a family BRCA1 mutation. You need to know if you are increased risk for ovca as well. Myriad will even expedite your results. They will only cover testing for those unemployed and/or without insurance. Seek genetic counseling/testing soon. Best wishes.

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  • Georganne
    Georganne Member Posts: 75
    edited July 2009

    mandi - I have to agree with the above ladies about the importance of you knowing if you are BRCA positive. I have basically the same horrific family history for cancer as you do.to explain -  

    In 2006, while my mom was in the final stages of ovarian cancer, both of us were tested for BRCA because my wonderful gyno told me he didn't like my family history. This revealed the possible reason for all the cancers in my family - BRCA 2 mutation. Sadly mom succumbed to her cancer in March 2007, and in July 2007 I had a total oophprectomy (hyster + all OUT). Last Aug. 2008, when I had my yearly mammogram, I was told I have many hyperplazis and a pathaloma in a milk duct. A lumpectomy was recommended by a breast surgeon. I went to see him, and he looked at the BRCA mutation, family history, and my current issues, and basically asked me how I felt about my breasts and then led me to realize that with the combined issues (BRCA + history) I was playing with fire. Since then, I've had my bilat mastectomy, I went through expansions, I had my exchange to implants 2 weeks ago and now am healing and waiting for nipple reconstruction.   

    Mandi, I KNOW this is a lot to deal with, but if you get tested for BRCA and determine that this in in your corner too, the insurance will definitely WANT / HAVE to cover everything. Your breast surgeon and the plastic surgeon's offices will take care of all of the predetermined costs.  Frankly speaking it will cost less to cover you to stay healthy.

    I'll be remembering you in my prayers - HONESTLY. Please do this and stay healthy. Money is NOT that important. If you have to, pay for testing, get peace of mind, do it. God Bless you!!!! Georganne

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