URGENT help needed - implant removal. Should I get both out?
Hi - long story short, they are removing my rt implant in a few hours following a post-exchange infection that hasn't responded to abx. I had a very rushed talk with my PS today. We decided to be rid of both (the left one is also slightly red and a bit hard). Am I doing the right thing? I will most likely go for another reconstruction of some kind, but it might not be implants again.
Comments
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sorry - stressed and addled. 'The right thing' as in taking both, not just the really bad one.
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Hi Suze,
Sorry you're having to go through this. From what you've described, it sounds as if taking both would be a good decision, especially if the "good" one is also a bit red and hard. I think it's probably a good decision for two reasons. I think you'll find it somewhat easier to be symmetrical during the coming period during which you have to wait before having another try at reconstruction. Also, if you opt for a tissue recon rather than implants again, it would be hard to match your remaining implant with a tissue recon. Although it is sometimes done, generally women seem to be happier when they have the same type of recon on both breasts.
If you're sure you want implants again, then it might be worth leaving the good side. Another thought is that you could remove only the one implant for now and if you decide on an autologous tissue recon down the road, the second implant could be removed and both replaced with your own tissue at that time (with DIEP, GAP, TRAM, Lat Flap, etc.).
For the coming period, when you'll be without one or both implants, you might find my non-profit website, BreastFree.org, helpful. Many women from bc.org contributed personal stories and photos, and the site also offers suggestions for how to live breast-free in the immediate post-surgery period and once you're healed, including suggestions for comfortable breast forms and bras.
Best of luck,
Barbara
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Suze,
I agree with the two above. If I were you, I'd get rid of both implants. The infection may have spread to both sides and if it is not responding to antibiotics that could be very dangerous. I went through a couple of implant removals before giving up. You will probably heal very quickly once the implants are removed.
Best of luck. Let us know how you are doing.
- Susan
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From the peanut gallery...I think it's easier (logistically) to cope with a matching set...whatever it is.
Tammy Lou
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Hi
Thanks so much for the fast replies. I have tried to post twice again, but lost both of them - stress turning brain to mush!
I spent some time over at Breastfree this am, thanks Barbara - it is so comforting to know that there other other options and people live through this, even though in my wildest dreams I would never have thought I would even consider no recon. I am not sure what I wll do, ultimately. Just need to get through this nightmare first.
Susan, I am sorry you went through it twice. That would be my biggest fear, going through all this again and it still not working out. I am going to take some time out to think before deciding next steps.
But for now I will get rid of both. I think it will be less weird that way, and I really have come to hate the implants, anyway. 2 hours til surgery time...I have to walk back down to the hosp shortly. My biggest fear is waking up and feeling terribly disfigured. I wish I could just move past it, but I can't seem to.
'No recon' was never on my list of options when I started down this path. And I am scared that it is now a possibility.
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Best wishes to you, Suze. I hope your surgery turns out well and you enjoy some good health for awhile so that you have time to consider the next step. God bless you.
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Hi Suze I just had to have my right expander removed due to infection. I chose to keep my left expander because I have to do radiation and my radiation oncologist said it would be better to leave it in so we can see how well the skin does. I really want implants, and have no desire to have any of the other forms of reconstruction, so it was a logical choice for me. I just did not want any more very invasive surgeries like the trams. Of course my left breast was healing and doing great. If it had been red and hard like yours, I would have had it removed. I hope you do well with whatever you decide and I will say a prayer for you! Susan
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Hi
Thanks so much for the quick replies - it really helped when i came down to the wire. As it turned out, the other breast started to show signs of redness, too. So made sense to ditch them both. Finally got out of hospital yesterday.
Physically I am in much better shape, emotionally struggling a bit. I never expected to have to be flat, it wasn't part of the game plan. But I guess I can live with it for a bit. Or longer, if I have to...mostly I am just freaking out that recon just won't work for me, or I won't have the guts to go through with a DIEP, which is what my PS is recommending now. I guess I have some time to take stock of things before figuring out what's next.
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Suze I am so glad it is over and you are doing o.k. I am so sorry you had to lose them, but maybe after a while you will be ready for the diep. I so understand how you feel about it not being the game plan, as it happened to me also. Just take care of yourself, let your body heal, and then make your decisions. My heart goes out to you and you are in my prayers! Susan
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I think if the one is OK and not infected that I'd keep it. It'll anchor whatever you're wearing as a temporary prosthesis on the other side.
Now the downside is that you wouldn't be able to go around just flat.
I hope it goes OK. implant failure is not something I am looking forward to!
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Suze,
I'm so glad you came through the surgery well and that you're feeling better physically. I can totally understand your emotional turmoil. To have gone through the entire implant process and then have to lose them would be very traumatic. But thankfully, you still do have reconstruction options. For now, I hope you'll heal quickly and savor a return to physical health. Once you're feeling fully recovered, you can figure out the next step.
Barbara
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Suze,
I'm so sorry you had to have your implants removed. I had to have one of mine(on the cancer & radiation side) removed almost a month ago due to infection and then skin problems. It sounds like you made the right decision to remove the other one. In your shoes I think I would have done the same thing. There was no sign of problems with my other one, so I kept it, and it does seem to be "anchoring" things well so far. Like you, being flat was never part of my plan. But I knew for a month or two that it was a possibility, so I had some time to get used to the idea. It is hard emotionally, especially at first. Now I still look down and think I can't quite believe that I only have one breast(implant). Like anything, it will take time to truly come to terms with it all.
My PS tells me too that my only choice for recon is a flap procedure. I don't think I want to do it, but I figure time will tell there too. I'm still getting used to my new body. I don't have a prosthesis yet, but am wearing a "leisure form" most of the time, which is working out well. I think I want to see what warmer weather brings. If I have trouble with my prosthesis in summer clothes or swimsuits I might just decide it's worth another surgery. But then flap procedures sometimes fail as well and I'm not sure I want to take that chance either!
I guess we should both let ourselves heal and put off any decisions for awhile. Wishing you all the best and a quick recovery. Take care.
Angela
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I couldn't wait to get rid of my implant (unilateral) mx and the augmentation necessary for a match. The capsular contraction was so bad I told my onc that I was at the point where I wanted to rip them out w/my fingernails (he cautioned against what he called psychic surgery
).My onc referred me to a wonderful PS for a flap procedure. I've just finished stage II of a DIEP and feel fantastic. I'm comfortable w/my body and my friends say I look like my old self. DIEP is the standard recon procedure in Sweden. Here--you have to seek out a very experienced surgeon. I think it's well worth it. I'd be happy if anyone wanted to PM about this or post more.
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Oh, car, it's so good to hear something positive about second time around...my PS doesn't want me to do implants again, either. The trick will be to find someone with enough experience in NZ in DIEP. It is such a new process here, and because the funding in our public health system is such a mess, lots of women don't even bother with recon - it's too hard to get chucked on a waiting list and keep on getting ditched off. So guessing that even those who do it aren't getting a wole lot of practice.
I am so scared by the thought of the long surgery, though. They say the implant failure rate due to infection is 2.5% - I wonder what the death/disabilty rate for DIEP is. I sort of feel like now I have joined the 2.5% club for this, what''s stopping other dreadful 2.5% things happening? God, what's to stop me being one of those people who go on to get invasive b/ca or peritoneal ca despite the (I thought at the time) prophylactic surgeries? I think it just opens up all different kinds of scariness.
Susiered, have you thought about time frame for next surgery? I would love to reconstruct but I couldn't do it for a while - I need to focus on work for a bit, it's all been so destructive, and I really want time for my body to heal. Will you do implants again? I am going to get a bunch of different opinions next time around, I really think I didn't ask enough questions last time around. Which is just one of the hundred and one things I blame myself for. I am constantly beating myself up for all the things I could have/ should have done differently, and wondering if the outcome would have been different.
Thanks, Barbara. I know I need to focus on just getting better. It is very comforting to know there are so many strong women here who don't feel the need to have mounds of fat on their chests to feel complete/female. I wish I was that pragmatic. But I am not (yet...). I think it will help when I can go prosthesis shopping - everything is closed here for the Xmas/NY break, so I don't even have the fluffies or whatever you guys call them. God knows where I would be without this/your site. They discharged me from hosp with no post op instructions/restrictions and not a mention of prostheses or whatever. I might as well have had a mole removed.
Angela, my PS says the same - he wants DIEP next time around. Fortunately he doesn't do that surgery. I am pissed as hell with him, and I don't know why. Rationally I know this isn't his fault. But I am not in a particularly rational frame of mind right now. Feel like writing a self-help boo:"When Good Implants Go Bad".
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Suze, I'm so sorry about that. I didn't realize where you were located. I would be very cautious about the DIEP failure rates--which are quite high w/inexperienced surgeons. I read an article that cited a "learning curve" of 50 surgeries (or women's breasts, depending on your sensitivity.
My only suggestion would be to travel, or google your local universities. If you're unhappy w/your PS can your onc provide a referral?
If Belgium is an option, I know that Blondeel has done a lot of DIEPs and published in that area. He's in Ghent.
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Thanks, Car
My ideal would be to go to the US and pay out of pocket (my ins only valid in NZ), which I could afford to do BUT I can't imagine what it might end up costing me if I hit complications and ended up in the US health system uninsured. The surgeon who does the DIEP here has trained and worked os. I haven't yet met him, I will be asking how many he has done. If he has worked in US/UK he may well have done a few. Keeping my fingers crossed!
I am also going to suss out who is in Auckland, our main population base, as I figure by dint of numbers they must do more. I agree, the numbers really matter.
The other option might be Australia. Again, out of pocket for the recon but wouldn't be at such massive financial risk re the complications as I think we have a reciprocal agreement with them re public healths system
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I completely understand. It's a long shot, but I'll ask my onc and PS (I see both this month) if they know anyone in NZ or Australia. Both attend San Antonio and have published widely, and my PS actually knows Blondeel--mentioned it when I brought up a study of his.
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That woud be great, thanks Car. Never know...
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Hi suze....I will send you a PM. I am in Aust. but can put you in touch with lots of NZ BC ladies who may have some info for you.
jezza
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Not sure if you get e-mail notification of PMs but just sent you another one...thanks for your reply.
jezza
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Suze,
I'm not sure if it will make you feel better but I believe the failure rate for reconstruction with implants is much higher than 2.5%. Studies of reconstruction with implants after radiation in particular show failure rates of 60%+. The following quote is from a medical paper:
"For example, a study conducted by implant manufacturer Inamed found that 46% of reconstruction patients needed additional surgery within the first 2 to 3 years after getting silicone gel breast implants2 - more than twice as high as the 21% reported by Henriksen et al. One explanation is that the women in the Henriksen study had breast implants for an average of only 23 months, compared to 2-3 years in the Inamed study. Henriksen et al reported that 31% developed at least one serious complication and 16% developed at least 2 serious complications. The Inamed study reported that 25% underwent implant removal, 16% experienced Baker III-IV capsular contracture, 6% experienced necrosis, 6% had breast pain, and 6% had scarring, in addition to infections and other complications.2"
In other words, it's not something you did so don't beat yourself up.
- Susan
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Thanks, Susan - I think it was 2.5% for infection. Which I guess is probably just bad luck. But still hard to stop yourself with a whole bunch of what-ifs.
To be honest, I feel very liberated without the implants. The left one was alsio quite hard, and I was worried about contracture, so in some ways being rid of them and starting over in some way is good. Just not quite in the head space yet to imagine I will be able to deal with more surgery. But I guess I will get there in time.
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And Suze,
Both my implants also failed I opted for no reconstruction and just got a great prosthesis. You really can't tell the difference when I'm dressed, even in the lycra sleeveless shells that you wear under long sleeved low neck lycra tops. So give the idea of no reconstruction a whirl. No more doctors, drains, hospitals, pain, and holding your breath that all will work out well. That's why I decided to be just me , me without breasts.
Femme
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Hi Femme
You are so brave! I have to say that the idea of no more hospitals, doctors, pain and the anxiety that comes with the risks of surgery, is very appealing.
I am not going to jump into anything recon wise - I am just feeling so beaten about and sort of traumatised, really. I know that's a strong word, but it's kind of how it is. I have been having panic attacks and am hyperventilating a lot, and it has triggered quite a bit of old stuff for me...so I am just trying to take things really slowly and easy.
Given that all this has been going on for 4 months now, I am really surprised it has taken this long for my dormant anxiety to rear its ugly head.
I think once I am physically stronger things will settle down a bit. But it has certainly rocked me psychologically - and I am going to have to put quite a bit of energy into just calming my frazzled nervous system now.
Luckily I have a good meditation/yoga background and strong Buddhist leanings to fall back on, so it's really just a matter of taking stock and coming back to some of those fundamentals that really keep me sane when the going gets tough, I don't know where I would be without those things. I am very lucky to have them...
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Suze
I used to live in Auckland. I was referred to the St Marks Breast Centre in Newmarket. The surgeon there in January 2000 had done a few tram flaps. If he's still there, he'll have probably done more by now.
I ended up moving to Aus with work and am now in the Aus system, so can't personally comment on his handiwork.
Good luck, I'll keep my fingers crossed for you.
B
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Suze,
I just went online to try and get some feedback re: my issue and I stumbled upon your question.Perfect! I just learned I have to have mine out too due to skin damage and ongoing infection. I am going to keep my other one and decide later about another type of reconstruction...maybe lattimus (from back). I am looking forward to being without physical pain and all that has come with it...but I am struggling with having no breast even though what I have is really not a breast! My immediate decision is whether to have it out in 3 days or wait until after a trip I have planned with my Mom which is the 19th-25th. I am thinking of going ahead and doing it so at least I am comfortable and out of pain. How was your recovery? I'll have 10 days to recover before leaving. How did you get info re: what to buy, where to go, and what in the heck is a fluffie? The Lord will see me through this next bump in the road.
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Oh, Lauralou, I am so sorry that you are gong through this, too. It's awful, isn't it?
The relief from physical pain and discomfort is quite immense, though I have been so sick from all the antibiotics, it is only now that I am stopping them, that I think I will start to come really right.
I am not sure about the trip - I think I would have been fine 10 days out (today, for me) if I had not coped so badly with the antibiotics. You probably also have to be prepared to not be entirely healed - even 3 days ago they were worried that the infection hadn't fully cleared.
Not needing pain relief, though, and just v tired from the anesthetic still.
I got all the info re what to wear and buy etc on line, and then chased the info around locally (NZ). It seems like here, when you get a mastectomy w/out recon they come and talk to you about prostheses and give you fluffies and stuff, but because my mastectomy was with immediate recon 3 months ago, I fell through the cracks.
Breast care nurse seems to have been the source of all wisdom on this for me. The nurse at the hospital was kind enough to arrange to have her come and talk to me when I went for my appt today.Oh - fluffies are like wee dacron filled pouches that you pin into your bra to make it look like you've got something in the interim, til you're healed enough for prostheses.
In terms of whether to wait or not - 10, 20 days is a long time in the life of an infection, and you might find it turns on you while you are away, without your standard support systems and access to usual medical care etc. I def wouldn't risk it if it were me.
Hope it all works out, keep in touch, and sorry you had to join the club
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Suze,
I am so sorry to hear about the pain and frustration you have been going through. My thoughts and prayers are with you as you decide what is right for you to make YOU feel better. Back in 2003 I had a right mastecomy (age 31), and decided to go with a TRAM flap. Best decision I ever made! I never liked the idea of putting anything "foreign" into my body (i.e., implants). I try to look at the brighter side of things...I got a tummy tuck out of the deal! I don't know if this is an option for you, but I hope the suggestion helps! Take care!
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thanks for feedback! I go in tomorrow for surgery to remove it before the trip. I may be a candidate for a TRAM in the future if I am up for it. I have had so much support through all this over the last 15 months but feel I am more on my own for this latest hurdle as I feel everyone is "tired" of me being in crisis all the time. This website has been helpful to reach out to. I went to Nordstrom yesterday and got some items which helped and got my first look at a prosthesis...they don't look too bad but truly didn't think I'd be at this juncture.
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Lauralou I know what you mean about kinda "wearing out" our support people. I know I have huge support from so many friends and family, and I think we are ALL just worn out. Everyone is ready for me to be well and get my life back together. I know they are still there and will do whatever I need, but all this is long and hard and it does wear you out.I'm sure all your loved ones are the same, but remember they love you and will be there for you I am sure. But like you said this is a graet place to vent and find encouagement. No matter how tired we are..we have to keep on keepin on. At least you can see some light at the end of the tunnel. I have been wearing prosthesis and while they are definatly not me, they do make me look likea woman again in my clothes and I am so happy I got them until I can have reconstruction. Good luck to you! God Bless! Susan
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