PBMX....Such a hard decision!!!!

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dmarie71
dmarie71 Member Posts: 81
edited January 2015 in High Risk for Breast Cancer

I was diagnosed with ALH/LCIS 3 years ago.  I have no family history but extremely dense breasts that make my mammogram and MRI images difficult to read.  I tried tamoxifen but had terrible side effects.  I scheduled a PBMX but became ill a few weeks prior to surgery and had to cancel.  Fast forward three years...I have been diagnosed with a connective tissue disease (autoimmune), my latest MRI showed 3 masses in my right breast (the bad side) all were benign after biopsies, and my latest mammogram (yesterday) showed lots of new calcifications on my left breast.  I am now scheduled for a repeat mammogram and ultrasound in 6 months and a repeat MRI in 6 months.  I feel like I'm moving "closer" to the shoe dropping.  Am I crazy for wanting to pursue the PBMX?  If the latest biopsy results would have shown more atypia...it would be a no-brainer but it was benign...so I play this head game with myself thinking I'm over-reacting!?!?!?!  In the past 3 years, I have had multiple cysts aspirated, 4 biopsies and 3 separate areas removed during a lumpectomy procedure.  I know I want to jump off this crazy train...but so scared to go ahead with the surgery!!!!  Any advice...anyone been down this path??????  Thanks so much for listening!!!!

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited October 2014

    dmarie- 

    I feel your frustration! 

    I'm in all most the same boat. I had a LX in August and it came back with ALH. I met with a MO and decided to go to Dana Farber for more tests and talking. DFCI analyzed the same tissue sample as my first hospital and they said it turned up ADH. So now, I have two choices. Wait and see method- as you said, mamm and mri every six months- also known as the wait for the other shoe to drop method. Or a PBMX. 

    Currently- I'm meeting with a new surgeon this Friday for a second opinion on my LX and it's healing process- which is mega slow! And then next Friday- I'm going to have 20 biopsies. 10 on each breast to check for more atypia. If they come back positive- that's a check in the PBMX list. 

    I'm also meeting with a councillor next Tuesday to discuss the emotional aspect of each choice. The doctor I'm seeing for this, wrote a book which I just started reading tonight- prophylactic mastectomy - dr Andrea patenaude. So far, it's worth the read. 

    Just know that you are not alone. 

    I hear you, loud and clear. 

    Xoxoxo 

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  • dmarie71
    dmarie71 Member Posts: 81
    edited October 2014

    Couturehousewife...20 biopsies!!!!!  Oh My Gosh!!!!!  I just had 3 core-needle biopsies and it took almost 2 hours...I cannot even begin to imagine 20!!!!!!  You poor thing!  As you are reading...are you finding answers or is it more confusing?  PS...glad to know I am not alone (unfortunately)!

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited October 2014

    I think they are fine needle- so I'm hoping it won't be horrific! 

    I'm not that far into the book- but it seems good! Hearing stories about gals just like us.

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  • dmarie71
    dmarie71 Member Posts: 81
    edited October 2014

    Do you have any family history of BC?

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited October 2014

    yes- albeit small. 

    I also tested negative for brca. 

    May I ask how old you are? 

    I'm 31- and I'm finding that bc I'm so young- the choices are harder. 

    MO doesn't want me to go on tamoxifen until I've had children- but requires I have kids before 35- and at 35 she will put me on tamoxifen either way- unless I do the PBMX. 

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  • ballet12
    ballet12 Member Posts: 981
    edited October 2014

    Hi Coutourhouse, is the multiple biopsy procedure at Dana Farber a common one, for high risk patients deciding about PBMX? I've never heard of it.  I hope it goes well.  It does sound very painful to me, especially if they do core needle biopsies throughout.  I can't even imagine it, actually.

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited October 2014

    hi!

    I don't thinks very common- the last person I spoke to told me only 25 women from DFCI were doing it! It's only needle bx so hopefully that's tolerable! 

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  • ballet12
    ballet12 Member Posts: 981
    edited November 2014

    At least it gives you some idea of just how high risk you might be.

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  • Couturehousewife
    Couturehousewife Member Posts: 26
    edited November 2014

    exactly! More info the better!

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  • Papillon1
    Papillon1 Member Posts: 308
    edited January 2015

    what scares you about having it done? Personally I am looking forward to the morning I can wake up and my risk be gone. And I am only moderate risk but I have watched my mother suffer.

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  • dmarie71
    dmarie71 Member Posts: 81
    edited January 2015

    To be honest...I am afraid of the process and the pain. Also, I have a connective tissue disease and I worry how this surgery will affect my disease. However...since this post I have met with my PS and scheduled surgery for Jan 21st. I am completely at peace with my decision to proceed with the surgery...especially since I will NOT be doing reconstruction with TE. I am doing small implants the day of surgery with liposuction and fat grafting. I will then have additional surgery in 3 months after using BRAVA for 3 weeks. This surgery will entail more liposuction and fat grafting...then I should be DONE and NEVER have to think about mammos, mris, or breast cancer ever again!!!!!! So....I'm still very nervous but no where near as terrified as I was when I originally posted this discussion. Good luck to you!!!!

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  • Papillon1
    Papillon1 Member Posts: 308
    edited January 2015

    happy to read you are happy.


    But you know we will still need mammos...but we shouldn't have to worry about them :)


    Good luck! Xx

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  • dmarie71
    dmarie71 Member Posts: 81
    edited January 2015

    According to 4 breast surgeons I've seen at top hospitals...I will not need another mammogram again...unless an implant issue is suspected.

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