Made the decision for PBMX

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Ninany
Ninany Member Posts: 55
edited June 2014 in High Risk for Breast Cancer

After discussing with my medical oncologist and surgeon, I've made the decision to go ahead with PBMX. My decision was made a bit easier after my genetic counseling gave me a 66% lifetime risk. I'm still waiting for gene tests to come back, but I feel strangely relieved that the decision has been made. Now I'm going to meet with a plastic surgeon that my surgeon prefers to work with to discuss my options. He thinks I'm a good candidate for nipple sparing, so that's what I'm banking on. Any advice for questions to ask, etc? I'm still in the planning stage right now, since I have LCIS, I have a bit of time and am planning to start the surgery in the springtime. Also, I've never had an MRI and my surgeon wants me to have one before the PBMX. Anyone see any reason to have it even sooner? I just had a follow up diagnostic mammo and US and all was stable. I'm also starting a strict nutritional regime to get as healthy as possible. Any other advice on how to prepare for this surgery would be much appreciated.

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  • Ashley1226
    Ashley1226 Member Posts: 7
    edited September 2013

    I don't have any advice or tips. I just found out last week that I'm BRCA2+ & I also have a strong family history of breast & ovarian cancer. I am 99% sure I'll have a PBMX and partial hysterectomy in just a few short years after I'm done having babies.



    I really just want to say good luck & best wishes for the path you've chosen. As I read about women making this choice for themselves, it's making me more accepting and comfortable with deciding to do the same. This is by no means an easy choice.



    Thank you for sharing and I hope to read more of your journey in the future.

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  • peanutsgal
    peanutsgal Member Posts: 161
    edited September 2013

    Hi, Ninany,



    Congratulations on being so proactive with your health. As far as the MRI goes, I'm assuming they will want to do it closer to time for the PBMX. If anything is suspicious, they would proceed a different way than if it's all clear. I had PBMX in January of this year, had my exchange in April and a revision with fat grafting done yesterday. None of it is so bad that it is unbearable. The absolute worst part is the tissue expanders. Right after surgery, I had one TE that rubbed my underarm every time I moved my arm. As it became more full, it moved out of my armpit and stopped rubbing. When you go to the PS, ask to see pictures. If he or she does not have any or won't show you, I would seriously consider someone else. If you have any questions I would be more than happy to share my experiences with you. Feel free to PM me anytime.

    Best of luck to ya!
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  • lreith62
    lreith62 Member Posts: 18
    edited September 2013

    I too am waiting for my gene test to come back the anxiety I keep having I too want a PBMX. My mother died of breast cancer at 52. She had a radical masectomy when I was 15 and it has left a emotional scar. Did anyone in your family have breast cancer?

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  • Ninany
    Ninany Member Posts: 55
    edited September 2013

    I met my new PS on Friday.  I really liked her, she didn't rush me through the long list of questions and concerns I posed to her.  She proposed what she wanted to do and we discussed different scar approaches and outcomes.  We will be doing nipple sparing which my BS has a lot of experience with and I especially like that she and my BS have a great working relationship.  They work concurrently in the OR!  Anyway, I am feeling more and more settled and content with my decision.  I will spend the next few months eating well and exercising regularly to be as fit as I can be in advance of the surgery next Spring.  I am also, just for due dilligence, going to see another PS, just to have a backup and also to hear what his approcah would be, though I don't think it will change my mind.  

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  • Ninany
    Ninany Member Posts: 55
    edited February 2014

    So my surgery has been scheduled for April 9 at NYU.  My breast surgeon is Richard Shapiro and my plastic surgeon is Miyhe Choi.  I will be having tissue expanders placed at that time.  They are going to do nipple conserving, if all is ok.  Hoping all goes well. I'm eating well and trying to exercise daily.  It's hard to wait, but also I'm glad it's not tomorrow.

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  • sarahjane7374
    sarahjane7374 Member Posts: 669
    edited February 2014

    Best of luck to you Ninany. 

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2014

    Ninany  - We'll be cheering you on from the peanut gallery! Waking up and realizing you outran the beast will be one of the sweetest moments in your life.

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited February 2014

    Ninany - After reading your thread from the beginning, it seems as though you've been contemplating this for quite some time now - which is a very good thing.  A BMX under any circumstances is a big surgery and huge personal decision.  But it will also take a huge burden off your shoulders.  You sound as if you're at peace with this and that's so important. Speaking as someone who's been there, I know that six months plus after my original diagnosis, and subsequent decision, I would still choose exactly the same path.  It is a huge relief to be able to face the monster and walk away knowing you've done everything in your power to defeat the beast.  We want you to know that we'll all be in your pocket on 4/9/14 cheering you on!  Please let us know how it goes and if you have any questions...  Sending you a hug and a prayer....

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  • Papillon1
    Papillon1 Member Posts: 308
    edited February 2014

    hi,

    I had a consultation with a surgeon yesterday, even though I only have. A 25% risk. But it's too high for me as bc has a history of being fatal in my family. We had a preliminary discussion about what he suggested and I wanted. Can I ask - Why expanders and not implants?

    I am yet to meet a plastic surgeon but the surgeon does have one he works closely with and who also work concurrently in the op. 

    Also, have you spoken with more than one surgeon? I was recommended to see at least two. Have only seen one so far and just curious what others are recommended.

    Thanks and good luck!

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  • Ninany
    Ninany Member Posts: 55
    edited February 2014

    I met with two plastic surgeons.  I preferred the tissue expander approach of the first one, Dr Choi because it made more sense to me than an immediate implant.  I am currently a 36D and would like to go a little smaller. My PS will be working with an inframammary incision and using Alloderm for support.  She says the results are better if we progress slower with TEs rather than an immediate reconstruction and then I can also decide as I go on size.  She says that immediate reconstruction can often have complications like scar tissue etc.  Anyway, I am ok with waiting and want the best long term results.   Once we do the exchange to the permanent implant, she will do fat grafting later on after the implant has settled.  The other PS had a lot of choices.. too many, I thought.  He was talking DIEP but then said maybe not bc I didn't have enough belly fat, then he spoke about immediate reconstruction, etc.   I just felt like it didn't make sense for me given what the other surgeon was saying about size issues.  Plus she and my breast surgeon perform these surgeries together very often and have published many papers together on nipple sparing, so that was why I ultimately chose the surgeon I did.  I also felt very cared for by her.

    Good luck and ask lots of questions!  I had two consultations with each PS before I made my choice.  

    Best, N

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  • Papillon1
    Papillon1 Member Posts: 308
    edited February 2014

    Thanks. It's so much to think about. 

    Good luck for your op, I'll be keeping an eye out for an update after :)

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited February 2014

    Ninany - I think you'll be happy with the TE approach.  Not so much the experience itself, because it's a bitch, but remember that slow and steady wins the race!  I think the average that most of us got was 50 CCs in each TE at every fill.  It's painful, but doable.  Don't let anyone hurry you, or go faster than you can handle.  You'll know.  And this way at least you'll get the opportunity to see how big (what size) you want to be before the actual exchange...  Please keep us posted on your progress....

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  • AZ85048
    AZ85048 Member Posts: 2,613
    edited February 2014

    Papillon1 - I think if you have the opportunity, seeing two surgeons is great.  See who makes the most sense to you and cares about what YOU want as opposed to what they think you should HAVE.  Go with your gut and you won't go wrong.

    In answer to your question about TEs versus direct to implant, not everyone is a candidate for the latter.  If your skin is thin, if you're over a certain age and your skin isn't in great shape. if you smoke, if you've been radiated on one side or the other, etc., etc.  Here's a comparison chart of all the different types of reconstruction with their pros and cons that I found on BCO:

    http://www.breastcancer.org/treatment/surgery/reconstruction/types/comparison-chart

    Also, might I suggest that you take someone with you to these early appointments (like the one with the PS)?  This is a emotional roller coaster you're on and it's very normal to go into information overload and miss half of what's being said in those meetings.  I brought a friend who was not only another set of ears in the room, but she was taking notes the whole time, which was a huge help when we discussed it later.  These are important decisions and you owe it to yourself to be as well informed as possible, so I hope that this helps a little.  Please check in and let us know how you're doing.  Sending you a hug and a prayer....

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  • Papillon1
    Papillon1 Member Posts: 308
    edited February 2014

    thanks so much xx

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  • DiveCat
    DiveCat Member Posts: 968
    edited February 2014

    Ninany,

    I can relate to the surgery date feeling so far...yet being glad it is not tomorrow! My PBMX is scheduled for May 13...but that may change as I am going for another consult with another PS next week. I do like my BS/PS scheduled but I guess I am remaining open to other options too. Next week's PS is a couple hours away though so I need to think of logistics and such a bit more.

    I do not have LCIS that I know of but do have a 40% risk based on strong multi-generational family history. They have all had earlier, hard to detect, aggressive, and advanced cancers. So yes, I am not comfortable relying on chances of catching it "early" (aside from all my other issues with that concept). The high risk screening required is also stressful and worrisome, especially with rather lumpy breasts to begin with.

    I am also doing NSM with TEs, with IMF incision. I am a natural 32DD and want to be smaller so have lots of (healthy) skin to do direct to implant but my PS does prefer TEs over direct to implant as well as it gives him more opportunity to get size, shape, and symmetry to a place that meets both our goals, and he likes how it is easier on the tissues overall. This works for me but I am still interested to hear what my PS next week says. I do know that though direct to implant is ideally one surgery, I have seen that not play out in reality many times and even seen some of them have longer and harder recoveries (and more surgeries) than those with TEs. Not all, but enough to know the ideal outcome and timeline is not guaranteed! 

    I feel nervous about surgery, outcome, and recovery, but also very, very relieved and comfortable with my choice.

    I wish you a smooth surgery and recovery!

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