Has anyone had new expanders removed?

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Hi everyone. I've been reading here for a few weeks now but finally decided to register and participate. I had bc back in 2006 (LCIS  on each side 6 mos apart) treated with lumpectomies and increased surveillance. I had exams and mammo's and MRI's every 6 months. This spring showed that it came back with a vengeance (left side, NED in the right side) and two weeks ago this Wednesday I had a bilateral mastectomy. You would think that my very first post to this forum might be about the upcoming chemo rads or the mets they are looking for, but no... my first post is about expanders.

I reluctantly agreed to societal pressure (and my partner) and decided to have the expanders/implants put in. I woke from the mastectomy in extreme pain and have been in pain or discomfort Every Single Second of Every Waking Moment I have. No one would listen to me about the pain and I ended up in the ER 5 days after surgery. The PS took most of the initial 100cc fill out of the expander and that (along with heavy narcotics and valium) has eased the muscle spasms. However, I want these things OUT OF MY BODY. It's like wearing a bra that you can't take off that is six sizes too small... and that rides up under your arm pit. I'm facing enough pain and misery with chemo and rads and all the things that come with those things - the thought of having to have these things inside of me makes me want to open the incisions myself and rip them out.

I know that lots of us find the TE's to be anywhere from uncomfortable to unbearable and I appear to be in the unbearable end of the spectrum. Have any of you had them out and how soon did you do it? Any complications from doing so? I see the PS tomorrow and plan on telling him that I want these OUT of here - last week when he took 80cc's out he basically talked me into giving it some time. I don't want to leave there tomorrow having given them ANY more time than what it takes to schedule an operating room.

Any advice?

Comments

  • RegulJ
    RegulJ Member Posts: 244
    edited May 2010

    Do what is best for you. If you wan't them out the PS should NOT argue with you.  If your partner loves you for who you are he/she should not care.

    IF for some reason down the road you change your mind- you can always always try again.

    As for me I chose to keep my TE and it took a long time 2+ months for the pain to go away where I was having a "normal" day.

  • makingway
    makingway Member Posts: 799
    edited May 2010

    I had my single TE removed 2 months after the mastectomy. I just couldn't bear it any longer. My PS wouldn't do it until my oncologist gave him the ok. I had an implant put in and now I want it out. I am in constant pain. I have found a possible solution. A doctor in Miami has invented a new procedure called the Brava system. This is what I'd like to have done because this implant sucks!

  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited May 2010

    Just Jean, check out the thread on continued tissue expander pain about the problems other women have had with their expanders. A friend of mine continued with the expansion despite the pain and had the perm implants put in but still had pain from the implants resting on nerves, she ended up getting them removed and had recon done with the s-gap surgery and no longer has any pain.

    Sheila

  • Graphics-Gal
    Graphics-Gal Member Posts: 8
    edited May 2010

    I had my expanders removed 4 months after placement during mastectomy. I had some initial healing problems from the surgery, but was in constant pain for 4 months and finally asked my PS to just remove them. I am so glad I did. Only wish I could have done it sooner!

  • JustJean
    JustJean Member Posts: 327
    edited May 2010

    Thanks for the replies. These things are going to have to go. The crowning touch came today when I went for an MRI (a recent CT Scan showed some suspicious lesions on my spleen and they wanted to check them out) and they refused to give me the MRI because the tissue expander has too much metal in it. WTH????

    I called the PS's office. I know he is out with a broken clavicle but I don't see why someone else in the practice couldn't get these things out of my chest. The sooner the better.

    I feel like I'm being tortured. I think I'd be so sooooooooo much further along healing and getting ready for chemo if these things just weren't in there.

    Jean

  • jessicav
    jessicav Member Posts: 161
    edited May 2010

    Hi ladies-

    I have been in pain from implants for a few years now and no PS cant tell me if pain is because my body just does not like implants or if it is "these" implants. Does anyone know if it is possible t o have the implants out and then do Lat Dorsi later? Just want to be pain free asap. Or would skin just shrival?

    Jessica 

  • JustJean
    JustJean Member Posts: 327
    edited May 2010

    Gosh Jessica, I don't know if you could do that or not.

    My own situation changed very quickly last week when I saw my oncologist and we talked about the whole issue. They went over my ER records and I told them about all the times I have begged to get the expanders out. I told them how the PS said he couldn't possibly do it until mid July - which of course would have delayed my chemo because they don't want to start it with unhealed incisions. I practically begged them to see what they could do to help me get these things out of my chest - not only so I could have the MRI but so that I could retain what little is left of my sanity.

    Forty minutes after I left the onc's office I got a phone call from the PS department - a colleague of my PS was willing to take the expanders out and wanted to know if I could do it next Tuesday? You BET I could and I did! First time in my life I ever looked forward to a surgery.

    The new PS tried to talk me into leaving some skin in case I wanted to change my mind later. I told him that I would never be putting another expander in there and to make it as nice looking as possible so that's what he did.

    My first thought when I gained consciousness after the surgery was OMG I CAN BREATHE AGAIN. There was no feeling like I had a bra six sizes too small on. Nothing digging into my armpit. Nothing behind my poor sore chest muscles. I started giggling right then.

    Today I did laundry. I went grocery shopping. I went to dinner with my sister. I am way more on my way to recovery in this one day than in the three weeks of h*ll that preceeded it with the expanders in there.

    When I heal enough I will go out and find cami's or bras or whatever will fill my occasional need to be seen with "breasts" in public. For now, the next two weeks of my life will be spent getting healthier for my upcoming vacation (first I've had in a decade). I'll be doing my exercises and lots of walking and drinking lots of fluids and taking my supplements and rejoicing that I will never spend another day with that expander in me.

    I figure that with any population of any criteria you're going to have that bell curve.... some people go through expanders with barely a thought, most fall somewhere in the middle with some discomfort but manage to get through it, and then there are folks like me at the other end who just cannot seem to adjust. I'm glad it's only taken me three weeks to get them out and not three months or even years!

    I'm not happy looking at my chest where there used to be my very own breasts and seeing those long incisions. If I'd had my choice I wouldn't have had ILC in the first place. But I am very glad the expanders are out and will not even consider something like DIEP or TRAM -- too long a recovery time, too much risk, too much pain, and I am of an age where it's just not that important any longer.

    Of course, this is just my opinion about me. Your mileage may vary.

    Happily expander-less...

    Jean

  • Suzybelle
    Suzybelle Member Posts: 920
    edited May 2010

    Jean, I'm so sorry you had to go through all of that, but glad you are happy and pain free now.

     Sending good thoughts your way!

    Suzanne

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited May 2010

    Jean,

    I'm so glad that you're out of pain now, and that you were right that the expanders were the source of the problem. I think your bell curve concept really makes sense -- some women do seem to breeze through reconstruction and others never fully adjust. I chose non-reconstruction from the start and haven't regretted my choice.

    Of course, like you, I wish I hadn't had bc (twice). It's been almost four years since my bilateral mastectomy and I've noticed something lately. My flat chest now really feels like me. I like the feel of it. Although I do wear breast forms almost all the time in public, I like that I can take them off and that I can vary the size I am depending on what I'm wearing. I would be afraid to have recon now, because I don't think I could achieve the external "perfection" I get when I wear my forms. Of course, no cleavage. That may be my one regret regarding my pre-breast cancer life. I was never one to show cleavage. Now I wish I had flaunted it (just a little) when I had it :)

  • JustJean
    JustJean Member Posts: 327
    edited May 2010

    Thanks, ladies!

    My partner is now very supportive of me - apparently she really thought that I would really want construction. So that's all good now. We're talking now about what to do in the months to come and are thinking of putting some sort of tattoo over the scar line once all the swelling and all goes down/away.

    The first three days after the removal surgery were pretty tough although nothing like when the expanders were in. Basically I just stayed on the couch and took my meds and got lots of sleep. Last night a friend of mine and I went and took my dog and her two dogs for a walk in my neighborhood and probably walked about 3/4 of a mile and I was very happy with that. Today  we ran some errands (she's here from another state to help take care of me) and I am pleased to say that I did the whole day on Advil - no narcotics! I'm not willing to throw the rest of them away yet but it's sure a blessing to be moving forward and not backwards.

    AND those dratted drains are under the PS's criteria for removal, which is less than 30cc a day, and I've made that for the last three days. Therefore, I have every reason to believe that at 8AM on Tuesday when I see the PS that these darn drains will be history and I can start sleeping on my sides again.

    Things are looking up. I do not believe I will ever regret having those things taken out so quickly. Not sure what the insurance company is going to think about paying to have something taken out that they've paid a small fortune to have put in but I'll deal with that when the time comes.

    Here's to healing and to getting through the rest of the treatment. Here's to all of us!

    Jean

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