LCIS, Prophylatic Mastectomies & Insurance

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shabby6485
shabby6485 Member Posts: 679

hi all.

in process of consulting for a pbmx for lcis.  does anyone know what the deal with insurance is for lcis.  does it depend on the insurance plan or is lcis generally covered?  i have united healthcare and my BS & PS are on my plan.  just trying to stay one step ahead.  thank you. 

Comments

  • mmswarowski
    mmswarowski Member Posts: 34
    edited March 2012

    Hi Shabby...I have United Healthcare (although plans probably differ) and mine was covered. As my BS said...."you are saving these guys a ton of money in the long run". My BS did all the paperwork. It was not a problem...but I do understand I had the same concerns.

    Maryellen

  • lizzyaz
    lizzyaz Member Posts: 18
    edited March 2012

    I love this forum!! This is the question I got on here to ask and here it is -thanks shabby!!!

    I got my results for my biopsy today (almost 2 weeks later!) and it was b9 for all but the LCIS I have had for abt 8 years. I am so not interested in doing this any longer so am seriously considering the pbmx myself. I meet again with the BS again within the month but I got got the impression initally that she considers pbmx excessive, so it sounds like she might not be too helpful with the paperwork ect...

    Maryellen - have you had your surgery yet? I have Blue Cross so I need to start figuring this out.  

  • mmswarowski
    mmswarowski Member Posts: 34
    edited March 2012

    Lizzy,

    I did have my surgery it was on Feb 28. I chose not (at this time anyway) to have any reconstruction. I am back up and around, am drain free and getting used to my new "profile". I am scheduled to go back to work on Monday :(.

    By the way my BS originally thought that PBMX was excessive,(but did say he would help me with whatever I decided) following his advice I did a ton of research, spoke to a PS and an ONC and in the end stayed with my original decision. When I went back to the BS he was nothing but supportive. He and his staff have been great!

    Remember Lizzy, you are the boss...it is your life and your health! PBMX is an accepted treatment plan for LCIS and to your insurance company a heck of alot cheaper (and that is the bottom line with your ins company) than a lifetime of mammos and MRI's.

    If this is what you want stick to your guns...also if your current BS will not help you as Mama used to say there are plenty of fish in the sea!

    Good Luck!

    Maryellen

  • lizzyaz
    lizzyaz Member Posts: 18
    edited March 2012

    Maryellen - thanks for the reply and sorry for the slight hyjack shabby. When I was diagnosed 8 years ago I was strongly steered away from PBMX by everyone; from onc to BS to casual aquaintences and honestly I now regret it. I was not even advised to take Tamox or have more than just routine follow-up. The good news is that I am getting another chance at my follow-up but the bad news is that I am still afraid of the reactions I am going to be getting. 

    Again, until I found this board recently I did not even know it was possible to find so much support for my decision whatever it may be :-)  Actually until I found the board I did not even know there were so many of us trying to figure this out!!!

  • KellyMaryland
    KellyMaryland Member Posts: 350
    edited March 2012

    also had united healthcare. pbmx and exchange surgery were fully covered (minus $200ish per each surgery)

  • carol57
    carol57 Member Posts: 3,567
    edited March 2012

    BCBS, who simply administered a self-insuring employer, covered my pbmx as well as the very pricey diep recon. No questions whatsoever from insurance, and in fact, they assigned a case management nurse who could not have been more supportive every step of the way. BS was fully supportive, too, although my huge family BC history meant probably nobody would question my choice.



    Shabby, can you ask for a case manager nurse? And keep in mind that plans within an insurance company do differ.



    Best wishes to all for insurance happiness!



    Carol

  • MammaShells
    MammaShells Member Posts: 53
    edited March 2012

    Hi, I have Blue Cross as well and everything has been covered bmx and recon.



    Lizzy, I struggled with this choice too and what might be considered an overly aggressive treatment. What is right for you is just that, and you have choices. I was so grateful for all of the technology, but it never fully erased my fear. I chose a single stage, nipple sparing surgery a year and a half after the diagnosis. It's only 4 weeks since the surgery, the relief that I have felt is surprising and it started when I woke up in recovery and they told me that the node biopsy was clear. I realized that deep down I had been fearful of something worse hiding in there. I'm worry free now and for me, it was the absolute right choice.



    My 11 year old sons asked me if having surgery meant that I wouldn't ever have breast cancer. I explained that this would mean that I have done everything possible to eliminate that chance, even though nothing is ever a 100% slam dunk. They both very solemnly said "thank you, mom" and I was blown away. Those three little words were what really mattered.

  • beacon800
    beacon800 Member Posts: 922
    edited March 2012

    Mammashells your story is so emotional.  So glad your kids understand what you did and feel more secure because of it. 

    On the insurance issue, Shabby I cannot imagine you will have a problem.  I had CIGNA and they paid without issues.  In your case, your insurer will probably save money by authorizing the surgery and your long history of biopsies will prove that out very easy. 

    Hope you do not have any trouble with it, but I think it will be fine as far as the insurance.

  • iammommy
    iammommy Member Posts: 213
    edited March 2012

    I also have united healthcare and had no problems with their paying. Nan

  • lizzyaz
    lizzyaz Member Posts: 18
    edited March 2012

    Mamashells - thanks for telling us your story. How are you feeling 4 weeks later? I am so new to this so forgive me if I missed it, but did you have reconstruction as well?

  • MammaShells
    MammaShells Member Posts: 53
    edited March 2012

    Hi Lizzy, I did have reconstruction at the same time. I had a one step nipple sparing procedure and direct silicone implants under the muscle. I had a sentinal node biopsy as well.



    Four weeks out, I feel dangerously good and kind of overdid it. My pain is minimal most of the time, but I get really tired around 3 most days and still can't lift much or reach certain ways. I did make it out to a fundraiser for a whopping two hours last night and that felt good and normal, except for the the fact that I was home and asleep by 7:30!

    My friends mother was shocked that I came, and people that didn't know I had surgery told me that I looked great with no idea that I had any of this...that felt incredible!

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

    they put the implants under the muscle? didn't they have to stretch the muscle with expanders?

    anne 

  • msippiqueen
    msippiqueen Member Posts: 191
    edited March 2012

    BCBS covered my PBLM, thankfully. By law insurance companies must cover recon, but I declined that opportunity.



    I declined the every three month breast assessment also. That aggressive monitoring is a world without end.



    Preemptive aggressive treatment is a conservative way to get a near zero risk of bc.



  • MammaShells
    MammaShells Member Posts: 53
    edited March 2012

    Hi Anne,



    Yes, they were able to go under the pec muscle all in the same surgery. I was amazed that this type of surgery was possible, that I could keep my nipples and have direct implants. I am very pleased so far with the results and even more pleased to have the worry behind me.



    I am happy to share the details over PM, I'm also considering posting on the photo site.



    -S

  • auntiems3
    auntiems3 Member Posts: 67
    edited August 2012

    Mammashells-I felt lifted by your posts.  I am in the process of doing my homework for a nipple/skin sparing PBMX followed by immediate recon.  I've been in the 6 month watch cycle for 5 years now and I am DONE! 

    I am totally petrified by the thought of future bc, chemo, rads, and TISSUE EXPANDERS (don't ask me why).......I have 3 months to get this over and done with during the summer in 2013.  As a part time college instructor( I have part-time positons at 2 different colleges and I work both fall and spring semesters), I pay my own insurance and get no sick time.  If I leave my job, they fill my courses with another willing and able-bodied prof.

    Other than that the next scary thing is the finances.  I have a huge out-of-pocket deductible in my plan, but they have open enrollment in December.  I am thinking about increasing my coverage and paying the higher premiums for a year or more.  It would be a lot cheaper than my current plan. 

    Does anyone know if this is a possible route to choose?  What is the downside?

  • SimplyAudrey
    SimplyAudrey Member Posts: 242
    edited August 2012

    I am in the process of scheduling my PBMX.  Although my insurance WILL cover the MX and reconstruction, the Plastics docs on my plan were less than optimal when it came to offering options, being willing to do NO flaps, and being upfront with me when it came to their complication rates and ability to do fat transfer if needed.  TE's and round saline implants didn't seem like the only option I should be given.

    I found an off plan PS who does excellent work and he sat with me, showed me all options, explained tissue matrix, measured me and HANDED me a tissue expander he thought would be best for my frame, and gave me my choice of implants. He also explained the potential risks, talked to me about fat transfer technique, and even checked me for possible fat to use - he suggested gaining a few pounds just in case! He is also VERY careful about potential infection, and explained some things he does to reduce risk of it.  NO, this isn't going to be cheap, but for me trust in a doctor's ability is crucial.

    I'm not going to settle for a potential Picasso when a Michaelangelo is available to me......... and financially, he is willing to work with me (although his finance office person needs a seminar on people skills....I'll be having a very empathic conversation with her when I make my down payment).

    Still waiting on final path from Thursday's MR guided biopsy to finalize the date....but we're tentatively set for October 1st.  I am actually excited. BS, PS, AND anesthesiologist all spoken with and on board.  This is actually going to be done as outpatient surgery......thus the MX part will be 10.00! (Maxed out my OP copay with all the biopsies, excision, MRIs, etc).

     Putting a little away for a rainy day turned out to be a good idea!  Looks like I'll be dancing in the rain in October!

  • JillIorio
    JillIorio Member Posts: 3
    edited August 2013

    So glad I found this topic!  I was diagnosed with ILC on May 2009.  I had a lumpectomy and radiation.  I am in year 4 of the Tamoxifen.  The original biopsy that found the cancer also showed LCIS.  I have been followed up with mammos every 6 months on the left side and annual MRI's.  Last year after my mammo in Aug they did a needle guided biopsy and again found LCIS.  This 6 months when I went for my mammo the radiologist suggested a surgical biopsy to get wider margins of the area of calcifications.  My husband and I talked with the BS on 8/23/13 and she said even with a surgical biopsy I would still likely to need other biospies in the future and both the ILC and LCIS put me at higher risk of developing it in the right breast.  When I asked about getting a bilateral mastectomy this time, the BS did not discourage it.  She set up an appt for this morning with the PS.  My husband and I saw him and we were very impressed.  Because of the previous radiation I am not really a candidate for the traditional saline implants.  I am in the process of being scheduled for a bilateral mastectomy with DIEP reconstruction.  In all the worry of hearing I needed yet another biopsy (3 so far on the left side and counting!)  I didn't even think to ask about insurance coverage for it.  My husband has BC/BS Federal as he works for the VA.  It sounds like from reading the posts on this topic it should be covered.  I'll just wait to hear from the BS office.

  • ndroby
    ndroby Member Posts: 104
    edited August 2013

    Jillorio,With your extensive medical history, they will cover the procedure. My BS wrote a letter to BC/BS stating that I had 14 breast biopsies, lost my mom at the age of 33 to breast cancer, my older sister with DCIS, and maternal GM with breast cancer. There was no problem. Put that concern out of your mind. You are making the right decision.

    Best wishes for success.

    Nancy

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited August 2013

    Jill - I definitely agree that it should be covered. My insurer BCBS agreed to a PBMx when I was thought to have "just" ALD, ADH and an extensive family history. Best of luck with your surgery!

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