IMPLANTS REMOVED: YAY!

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  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2015


    OK,, in the bag on the 9th!  Keep us posted!

  • DoggieBytes
    DoggieBytes Member Posts: 100
    edited January 2015

    thanks Glennie! The insert link button on this forum is wonky for me sometimes, probably because I'm using an iPad.

  • Bettyboops
    Bettyboops Member Posts: 239
    edited January 2015

    Yes, Ipad has trouble even typing correctly in this forum...

    I've been reading all the recent posts from all you lovely ladies regarding unsupportive docs and going flat. This is a BIG problem! You know, I think that if you are a woman who feels that recon is NOT for her, one has to stand straight and tall and downright demand what she wants. We cannot expect to be positively supported in this decision. I don't think we can depend on any medical doc answering questions in a positive manner about going flat. Time and time again docs leave extra tissue against patients wishes...Or upset a once reasonable person when they answer negatively about any questions regarding going flat...Or expect to talk patients into doing extensive recon procedures. What the what!!! So aggravating !!!

    This is a generalization(not all docs are evil but the system is) but I feel like ranting...The bottom line is there is big money in recon surgeries. I think it is surgical nirvana for docs since insurance pays and, typically, and a lot of us are on the young and healthy side (at least less than 70 or 80 years) at breast cancer diagnosis, some really young like 20 or 30! Perfect surgical candidates to work on. I was on the table for 9 hours during my BMX and my implant expanders installation!!! 9 hours of anesthesia! I was horrified when I found out. I didn't normally even take Tylenol, for crummy sake, because I felt it too toxic. Not to mention all the opiate pain meds...Geez, It has taken a toll on my overall health although I work everyday to get better. I don't want any of us to be lab rats in a grand experiment. Okay, my rant is over. Thanks for listening! Love you ladies!

    Best,


  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited January 2015

    Ariom and Glennie,  I talked to my boss, (my attorney) about this and he feels it would be very hard to prove any wrong doing or malpractice.  I feel so ashamed that I have let myself be taken advantage of and have to go through surgery again.  I sometimes think it is because my husband works for the USPS and I have terrific insurance.  I really want to be flat, but is it worth it to go through a mastectomy again??  I am so tired of going to doctors and hospitals and pharmacies.  What would the recovery time be?  I really don't want to be off work again for another two weeks.  I really don't think I am emotionally stable enough to do this again. 

  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2015


    nomatterwhat,,, this is NOT your fault.  It is the fault of the jerk dicktor who decided to do this to you!  You do not have to do anything right now!  If, in the future, you decide to have the skin removed,, go for it.  Get a PS consult and see what that person says.  You are just coming up on 6 months from your MX,,, you do not have to rush to get the skin removed.  Wait another 6 months or more,,, there is no rush to do this.  It sucks that we have to!!  (((hugs)))

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    Nomatterwhat, I totally agree with Glennie, so not your fault! These Dicktors need a good swift kick up the backside, for what they are doing to women. Doing it for the money from good insurance, is truly unconscionable!

    I do firmly believe, there should be a name and shame list, for every time this occurs. That would have to send a message to these crooks.

    Don't be giving yourself a hard time about this, there is plenty of time to think and decide if revision is even something you want to explore, down the track. It is very early days for you, six months is nothing in the grand scheme of things, your chest is going to change even more, in the coming months.As the time passes, you will feel differently about it too, it is such a lot to process. I left mine for 15 months and seriously, the main reason I decided to go for it was, because of the feeling of zapping nerves inside that Dog Ear, which irritated me enough, to have to do it.

    Although at first, I despised the way it looked, 15 months further along, I didn't like it, but I could have lived with it. It was the way it felt, inside, that pushed me into revision. If you can handle looking at the before and after pictures of my revision, it is on breastfree.org and you'll see exactly, what I mean.

    One other thing that I should mention too, is that the actual recovery after the revision, for me, was pretty uncomfortable for the first few days, not so I needed any pain meds, but also, not anything like the soreness after the Mx, node removal, discomfort.

    I wish you all the very best, take your time and let yourself heal, there is no pressure to make any decision. See how you feel a year from now. We will be here, to support you!


  • Bettyboops
    Bettyboops Member Posts: 239
    edited January 2015

    nomatterwhat,

    I agree with Ariom and glennie. There is no rush. Wait another 6 months and evaluate. Time is on your side now.

    Best,


  • jajjaaj
    jajjaaj Member Posts: 60
    edited January 2015

    I had a double mastectomy in March. I didn't know if I was coming or going and still faced additional treatment, so with that in mind, I didn't make any hardcore decisions concerning boobs or no boobs. At first I thought it wouldn't matter being flat chested, but now not so sure. Now that I have had time to adjust and research, I would like something there just so my clothes look like they fit correctly. This is important to me because most of my blouses hang down in front and the tips of the scars show. I'm considering an autologous reconstruction so to avoid issues with foreign objects. Still on the fence with this. So for now, I am going with prosthesis.

  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited January 2015

    You ladies are so right!!!  Since my husband doesn't like the way my chest looks at this point, I was hoping to become flat to make him feel more comfortable when we....     But it sure would be nice to be able to go on vacation this year and enjoy my summer and become "normal" again for awhile. 

    I actually had lunch with an old friend of mine today who hasn't seen me since before this started and didn't have any idea I even had BC.  She was ranting and raving about how good I looked and how good my color was and what a cute hat I had on and blah, blah, blah.  The whole time I was telling her my journey, she sat across from me with her mouth open shaking her head.  She didn't believe me until I squeezed one of my prosthetics.  She almost fell out of her chair!!!!  On the drive home, I decided that you ladies are so right and I am going to take my time and enjoy life at this moment.  I missed most of last summer, either in a hospital, doctor's office or unable to leave my own home.  This year, I want to go see my BFF in Texas and maybe even go to Richmond for a NASCAR race.   Thanks ladies, you are simply the best!!!!!!

  • Ariom
    Ariom Member Posts: 6,197
    edited January 2015

    WooHoo nomatterwhat! That sounds like a plan, a very good plan! It's great to see you so up and happy, in that post! Enjoy yourself!

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    YAY!!  Go on vacation and enjoy yourself!!!  Excellent plan!

  • gotgoats
    gotgoats Member Posts: 6
    edited February 2015


    Hello, just thought I would update you all, especially for those who are considering removing their implants. I had the surgery to remove my unilateral implant 3 weeks ago, and I feel so much better! It is a relief. My shoulder is still tight, and my pec still cramps on occasion, but I feel like myself again. I am planning on returning to the gym the end of this week to begin stretching and weight training again, something I stopped as the implant felt so weird and uncomfortable. I am left with loose skin, a nasty scar, concave, with a nipple - very interesting look for sure, but I feel so normal again I don't even care. I did not like that thing. At all. I don't know if I am too active a person or what, but it didn't work for me. And I am pretty tough and have a very high pain tolerance, was back to work 1.5 weeks after mastectomy/immediate implant surgery. So ... plastic things placed into your chest - be careful. If I was rich, I might try for a reconstruction using muscle/fat, but as I'm not, this is now me. OK with that. Best wishes to all of you, none of this is clear or easy to figure out. I hope you all can do well, and be comfortable in your own skin.

     

  • Ariom
    Ariom Member Posts: 6,197
    edited February 2015

    Congratulations gotgoats! Glad to hear you're feeling so much better, after the deconstruction. All the best!

  • AmyQ
    AmyQ Member Posts: 2,182
    edited February 2015

    I am getting closer and closer to the date for my second opinion and I am to the point with all my discomfort and constant reminder of these buggers that I don't care if there's extra skin left. I Don't Care!!! So next Monday I hope to be in much better spirits and have something life-changing to look forward to.

    Wish me luck.

    Amy

    PS to gotgoats I am beyond thrilled for you!!!

  • Bettyboops
    Bettyboops Member Posts: 239
    edited February 2015

    Yay for you Gotgoats! I'm so glad it worked out well for you. I feel the same way. What a relief!!! Keep us posted on your progress.

    Best,

  • Bettyboops
    Bettyboops Member Posts: 239
    edited February 2015

    Good for you Amy! Let us know what happens at your appointment on Monday.

    Best,

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    Glad you are feeling better, GotGoats!!  Hooray!!

    Amy: looking forward to hearing about your appt! In the bag for you.

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited February 2015

    AmyQ, if you're going to a plastic surgeon, there's no reason there should be leftover skin. Plastic surgeons are trained to give a good cosmetic result. Please let the doctor know you want to look as good as possible flat. Some plastic surgeons apparently seem offended when patients want to remove implants, but others are very understanding and work to give the patient what she wants. Please let us know how the second opinion goes!

  • AmyQ
    AmyQ Member Posts: 2,182
    edited February 2015

    I have mixed emotions regarding my second opinion today so wanted to report. First off, I really liked the PS and felt he really listened to my journey, complaints, description of events, etc. However he made a diagnosis of Post-Mastectomy Pain Syndrome which no one has made before. He explained that removal of the implants with PMPS most likely will not relieve my pain given the nature of my problem. Essentially he explained that the muscle and skin are tethered together over the implants. This means they act as one thick and inflexible unit, much like built up scar tissue. Removal of the implants will not do anything to change this, however he suggested and I'm considering, fat-grafting. By injecting fat under the skin and over the muscle, the fat will settle in as an extra layer of comfort like padding. Fat grafting, as much of you know, fills in unevenness, wrinkles, folds, ripples in reconstructed areas but this PS explained that they've discovered a secondary benefit to fat grafting and that is pain relief for the reasons outlined above.

    He said I can still get my implants removed, however he doesn't think that will fix my problem. I understand what he's saying and agree with him so it looks like I'll have this done sometime in the next 30 days. One good piece of news, if I do have the implants removed, he WILL remove excess skin and said that would not be a problem whatsoever.

    Sooo, while I've been preparing mentally for removing the implants, I'm a little dismayed at the thought of my pain being a chronic condition but why should I be surprised...I'm a stage IV BC patient dealing with chronic lymphadema and now PMPS - great!!! But life can always be worse.

    I'll be anxious to report the results of my fat-grafting surgery.

    Thanks for all your support ladies.

    Amy

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2015

    Sounds like you found a great PS Amy Q. I hope you get relief soon no matter what you decide to do.

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    So am I understanding you correctly?  He will remove the implants and do fat grafting to help with the pain?

    Sucks to have this on top of everything else.  (((Amy)))

  • Bettyboops
    Bettyboops Member Posts: 239
    edited February 2015

    Hi AmyQ,

    Hmmm, something doesn't add up here. I just heard of post mastectomy pain but I also know that implants cause pain as does lymphadema and general muscle healing etc...Also, my PS removed the "capsule" that gets formed between the implant and the muscle tissue. It is the body's defense mechanism, trying to wall off or encapsulate the implant, a foreign body. If your PS cannot remove that, find another PS. Some of the PS answer to everything is another surgery. If you want the implants out, get them out and then evaluate whether you have PMPS. Going through a recon that is going to cut up other parts of your body can't be good and is that going to cure PMPS if you even have it? Just some questions you might want to ask yourself. You should do what you feel is best for you! Don't be talked into another recon surgery if you want off the surgery bus. You know implants are not forever. They must be periodically changed. Also, fat grafting often requires 4 or 4 surgeries. My first PS told me about that fat grafting too. I was horrified that I'd have to do it 3 or more times because the body tends to absorb the fat making more than one graft necessary. Do you want to deal with that along with stage 4 cancer? Just some thoughts to help you evaluate this.

    I know that chronic lymphadema sometimes can be helped by massage and a compression bra. Have you looked into those options?

    Best,

  • Bettyboops
    Bettyboops Member Posts: 239
    edited February 2015

    Hi Ladies,

    I just wanted to shout out that I shoveled snow today and realized that my muscle strength is coming back after the implant removal 6 months ago! I was not able to shovel snow or garden or do much of anything requiring pectoral muscle strength when I had implants. I was so thrilled today to be shoveling feeling my chest, back and waist muscles all coordinating together. A great feeling after feeling so invalid with the implants. Don't get me wrong, I am sick of the snow!! We have about 4 feet - it's up past the first floor windows. Almost surreal...but I am so excited that my body is remembering how to use my chest and back muscles!! I guess my PS did do a good job reconnecting the muscles. YAY!!

    Best,


  • AmyQ
    AmyQ Member Posts: 2,182
    edited February 2015

    I'm sorry you've had such a difficult winter Bettyboops. I'm in Minnesota where we expect cold and snow but really we've been spared so far this year.

    Now back to my second opinion. I've never heard of PMPS before today but have started researching it right here on BCO. Of course, lots of very useful information but I did come across something rather surprising and if true, a deal maker...on the thread titled Post-Mastectomy Pain Syndrome there are pages of women who have had their implants removed and their lymphadema cleared up. That alone would be reason to remove my implants. Now I really don't know what to do.

    Another more invasive option discussed today is releasing the capsule(s) with surgical incisions. But of all the options discussed, fat-grafting sounded like the least invasive option according to the PS - small, almost microscopic incisions where the cannula is filled with fat, deposits the fat under the skin and over the muscle to provide the extra layer of cushion.

    He did give me a referral to a woman who specializes in breast reconstruction therapy for a pain assessment and treatment plan. I can see her on Thursday and hopefully she'll have a dx and plan long before my surgery date.

    One point I want to confirm, this PS is very willing to remove my implants and do fat grafting to give me the cushion he thinks I'm missing between the muscle and the skin. He'll remove the extra skin and do whatever is needed to repair the muscle so either way, he can help me out. I just don't want to have the implants removed only to find I still have pain, which is a very real possibility IF I have PMPS.

    Gosh, I wish I had a crystal ball.

    Amy

  • Erica3681
    Erica3681 Member Posts: 1,916
    edited February 2015

    Hi Amy,

    Sorry you're grappling with both the pain and such a difficult decision. Given that the fat grafting isn't very invasive (is it?), and certainly less invasive than going in and removing the implants, perhaps it's worth a try. You can always have the implants removed down the road. But I agree, if there's really not good evidence that this will help AND if removing the implants might improve your lymphedema, that weighs toward going with removal. As you can see, I have no advice to give. Just wanted to let you know I'm thinking of you.

  • AmyQ
    AmyQ Member Posts: 2,182
    edited February 2015

    Thanks so much Erica and everyone who has weighed in. I think I'll give fat grafting a try since it is the least invasive of all the options.

    Amy

  • Bettyboops
    Bettyboops Member Posts: 239
    edited February 2015

    Hi Again Amy,

    These decisions are not easy! ugh!! I know... Go with your gut and let us know how you progress. Good luck with navigating through your issues. You know we are all here to weight in on things if you feel you need it.

    Best,

  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited February 2015

    I know this is not the correct site, but you ladies helped me last time and I need a third, fourth, fifth and beyond opinions. 

    Has anybody else gotten a call from their MO's office wanting to set up an appointment "to go over your treatments and summarize what you have been through".  WHAT?? I got a call today from the nurse navigator from the hospital I had my chemo at and she wants to set up an appointment that would be about three hours and of course bill my insurance for this.  I told her that I could summarize what I have been through in very few words and can tell them every treatment I have had and didn't need to relive this past year.  My husband thinks it might be some sort of a psychological evaluation.  I am one of these women that when I get out of bed in the morning the devil says "OH NO, she's awake!!!".  So maybe they think nobody can go through the cancer treatments with a positive attitude unless they is something wrong with them.  But we both agree it is also for billing more to our insurance company.  Being in the accounting world, I have set up a chart to keep track of bills and payments and WOW is it scary!!! 

  • glennie19
    glennie19 Member Posts: 6,398
    edited February 2015


    The bills are scary.  No I have not had this happen to me,, but then again,, I never had a nurse navigator either.  Somehow I can't imagine that it would take 3 hours either.  Do you know any other patients at your center?  If you do,, I would contact them and see if they had this happen also.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2015

    I think docs are becoming more aware of the emotional toll it takes to have this disease. I think I read that sometime in the past year (?) protocols had changed and oncos are now charged with being on the lookout for anxiety and depression (often PTSD) that quite often occurs after active treatment ends. I certainly crashed and if my docs had been a bit more vigilant it might have been easier. I've always considered myself a very strong woman. It was very hard to climb out of that dark well - with meds and counseling. I am impressed that your docs have added this. I sure wish mine had.

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