after reconstruction disatisfaction
Hi I would love to talk to someone who is going through similar stuff. I just had my fifth reconstructive surgery 3 weeks ago. I'm cancer free and didn't need to get chemo or radiation. I know how lucky that makes me but I'm still really sad. I hate the way I look. I can't even let my husband look at me naked. We tried being intimate a couple of times and it was awful. It would be great to hear from others.
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I'm here. I hate my recon. I refused anymore surgery though. I won't be intimate with my dh without a camisole on. I just can't. It does get easier though. Just today I realized I actually do go long stretches without "fake boobs" running through my mind. I don't think I'll ever like them....they are fake. I don't like anyone to look at me naked either...yuck! I do feel the odd one out here as it seems most women are happy with their foobs. Not me. I'm just trying to make peace with it all.
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Hi anoym, I see that you joined this site today, me too! I am sorry to hear you are sad and unhappy with the way you look. I don't have much to offer as I am only 10 days post-op from bmx for dcis of a "higher grade than they like to see" with clear nodes (Alleluia!). I received an expander which was slightly filled and will learn more details of my dx and treatment when I go for my 2 week post-op visits this coming week. Though I am not where you are yet, I can identify with how you are feeling as I read your post. My husband has been changing my dressings and I cannot bear for him to look at me. He is being as good as he can be but I can see that it is taking a huge toll on him and on "us." I feel he is detaching. At this point I cannot imagine future initimacy and that breaks my heart. I appreciate that you have posted on this subject and I look forward to reading the responses. I wish you the very best.
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anonym- I think your feelings are a lot more common that people realize. The recon is downplayed so much and most PS's act like it's no different than a woman who comes in for augmentation. But it is very different as we all know. Sometimes there are answers, though, for what you are unhappy with. What type of recon did you have and what, in particular, are you unhappy with? There may be things to fix it. I hated my implants after exchange but did a revision with lots of fat grafting and now things are so much better. Everything looks and feels so much more like natural breasts.
If it's just the overall feel- numbness, lack of sensation, etc. this is tougher. A lot of women become depressed after recon is over because they realize that this is their new permanent "normal". It's a loss and can take time for you to grieve that loss. Things can get better, though, and even if it's different it doesn't mean it can't be good again with your husband again. It's sometimes a really long process to get to that point, though. Most say it takes about 2 years from beginning to end to fully process everything and begin to move forward. Complications from recon can make this process even longer. So I think all your feelings are perfectly normal. Tell your husband what you're feeling and try to find ways to stay close until you're ready to accept the new you.
Another member just posted the stages of grief after losing a breast. Not sure if this applies to anyone on here but it's a good read-
Stages of Grief After Losing A Breastby Becky ZuckweilerAnticipatory GriefGrief is an unfolding process that consists of five basic stages. We start the grieving process as soon as we learn that a mastectomy is a possibility and continue grieving long after the surgery is over. Grief for an impending loss is referred to as anticipatory griefStage 1Denial
When we first experience loss we go into the denial stage, during which we may feel shock, disbelief, and numbness. The denial stage is nature's way of cushioning us from the bluntness of reality. Denial allows us to gradually absorb the painful truth. Many women who have grieved the loss of a breast describe their response in the denial stage as hearing the information the doctor is telling them as though the physician is ta1king about someone else. They find themselves thinking that cancer and mastectomies happen to other people, not them. This response can give you time to intellectually attend to the details, such as making appointments with the surgeon and oncologist, before emotion floods in.Stage 2Protest
As our initial shock wears off we move into the protest stage, a phase of intense emotion, including anger, sadness, and confusion. As the facts start to sink in, our thoughts set off an emotional reaction. Our fear of surgery and of cancer is probably foremost in our minds. Before we are even sure we have cancer, we often start to think about dying and leaving our loved ones behind. We feel sad for our kids, our partner, and ourselves. We often feel betrayed and angry with our body. My clients consistently ask me what they did to deserve breast cancer. This is the time during which we tend to blame ourselves or others as we try to make sense of the loss. Anger at God, our doctors, or the relatives who passed on the bad genes is very common during the protest stage. Besides feeling the need to direct our anger at someone; it is also common to engage in unrealistic mental bargaining, such as promising to go to church every Sunday if our breast is spared. This bargaining is a combination of denial and our need to feel that we have some control over the situation. During this time, it is also common to experience physical symptoms from stress, such as diarrhea, constipation, neck and shoulder pain, rest-less sleep, and fatigue. Your stomach may ache or you may find yourself with a splitting headache that makes it hard to think. Your body may seem to be screaming out a message of emotional painStage 3Disorientation
The third stage of grief is the disorientation stage. This stage is often accompanied by restlessness, confusion, and depression, as we have to change our routines and adjust to the changes the mastectomy has brought. We may also continue to experience the physical symptoms of stress during this stage. Disorientation is very natural after your chest has healed enough to begin to wear more normal clothes and you are feeling strong enough to go out in public. You can't just go to your closet and pick out an outfit like before. Throwing on a bra and a T-shirt is not an option at this point. Now, selecting an outfit means finding a top that your tender chest and restricted arm can tolerate, plus finding a way to fill in the missing breast. You have lost a breast, the freedom to wear a variety of clothes, the movement in your arm, trust in your body, some of your sexuality, restful sleep, and physical comfort, to name a few of your many losses. And even though most of these losses are temporary or become easier with time, making the adjustment to them is likely to cause you to feel confused and disoriented.Stage 4Detachment
Following the disorientation stage we move into the detachment stage. During this stage we tend to isolate and withdraw ourselves, and possibly feel resigned and apathetic. It is as though we have to go off quietly by ourselves and sit with our loss. Too much contact with other people at this time often feels like an intrusion and a lot of work. We often feel we need to be left alone in our misery to fully absorb our loss and get used to the fact that a mastectomy has forever changed our life.Stage 5Resolution
The last stage of grief is resolution and it is during this stage that we enter a renewed state of reorganization and acceptance. We are not happy about the loss or our breast, but we see that we can live without it. The resolution stage often brings us insight into our life and ourselves that builds character and produce wisdom. During the resolution stage our mood lifts and we find we are able to experience joy again. This is also a time when we become grateful for what we have and want to give back. Volunteerism, such as in breast cancer support organizations, frequently accompanies this last stage of grief. If you give yourself the room to go through the emotions, you will move forward into the resolution stage of grief where you begin to feel acceptance. You will want to take back control of your life by becoming pro-active again. Priorities become redefined and life goals are reestablished. Your overall reaction may actually be a blend of loss and gain. Initially it may have felt like a horrible loss but, as you move through the process, you discover some advantages that come along with your body changes.Automatic BehaviorThere is also something called automatic behavior that often accompanies the grief process. This is what is happening when we don't get our routine behaviors quite right and we start to feel like we are going crazy. As we process our loss we become distracted from life's little details, and this natural preoccupation results in poor concentration while attending to daily tasks. As a result of automatic behavior you may find yourself putting the cereal into the refrigerator and the milk into the cupboard, squeezing a tube of skin cream instead of toothpaste onto your toothbrush, or seeing that the traffic light has turned red but not really registering it, and driving right through. Your short-term memory will also be affected because good concentration is required for the memory to work well. Do not panic over these lapses. They are temporary. However, it is helpful to remember that automatic behavior can occur during the grief process, so you can safeguard yourself. When you set out to drive, remind yourself that you are prone to poor concentration and constantly remind yourself to tune into the "here and now." During this time you should stay away from dangerous machinery until you feel your focus and concentration return.Each of you will go through the grief process in your own way. The stages of grief are meant to give a general description of the grief process, but in reality they are not as clean-cut as I have described. You will move back and forth through the various stages and can experience more than one stage at a time.The significance you attach to your loss will determine how long your grieving process will last and how intensely you will feel it. Grief from losing a small purchase you just made may last only minutes, whereas a significant loss such as the death of a close friend, a divorce, or a house burning down may take years. Significant losses are often brought to mind by special events and seasons associated with the loss and these triggers can create new emotional pain. Most women take about two years before they report feeling fairly resolved about the loss of a breast. Your most intense grieving will probably happen close to the time of your surgery but you will likely continue to experience some grief from your mastectomy for the rest of your life. You may feel that you have just started to accept your loss just when something else seems to set it off again. It may be three years later, when you are faced with having to find an evening dress for an elegant wedding that you suddenly feel the tears bubbling up again. You may want to scream and stamp your feet at the unfairness of only being able to consider a quarter of the dresses because of the changes to your body. Twenty years after your surgery your best friend or daughter may be diagnosed with breast cancer and you may find yourself reliving some of your own pain as you walk through the process with her. All of these feelings are normal. Every woman grieves in her own way and in her own time. -
Kate - thanks for reposting the stage of grief. Very helpful to read.
Just had my 1 yr cancer-free anniversary. I had immediate reconstruct after Bmx. Had no problems with tissue expanders, but my second set of implants are about to be replaced. Solid case of capsular contracture has thrown another bump in the road for me. Completely understand the feelings of unhappiness with reconstruction. Think more truthful and honest info would have been better pre-Bmx instead of "you'll feel better with implants." Truth is... I don't. I HATE them. Have hated them from day 1. Completely understand the feeling of wanting to keep covered in front of anyone, including my husband. To this day, I keep a bra or top on when we're intimate. We recently moved and I now have a much treasured jacuzzi tub. Except, I can't quite enjoy it like before because I can't help but see these awful foobies. I refuse to look in a mirror straight on. It's too difficult to stomach. I've switched plastic surgeons, but even my new plastic surgeon has me convinced I should try implants 1 more time. At least I got this one to agree to put smaller implants in. My last PS just did whatever the *@ll he wanted. IGNORED my request to be smaller. I've hit 8% odds of getting bc and 8% odds of getting cc.. feel like it's a solid guarantee that I'll be one of the 30% to get cc again. In public, no one can tell I had bc. In private, I want to shrivel up and hide. Try and tell myself that people go on with much more horrific disfigurations, but the bottom line is, foobies from reconstruct are no substitute for what God originally gave us. I'm very emotionally detached from the reconstruct and very clearly told my new PS as such. Wonder myself if I'll ever be able to accept the new "me". It weighs on my mind heavily and my husband doesn't understand. Fortunately it hasn't affected our intimacy, and as time goes on, at least the scars aren't as ghastly. Maybe with nipple-sparing bmx it's not nearly as awful, but there's no way I'll ever accept the foobies. For me, these silicone lumps (which I understand actually came out well...horrifies me even more) are a daily reminder of what bc took from me. Can't see how a flat chest would be any worse.
On a positive note, because the days are much better when you look at the glass 1/2 full.. lol, the cancer is gone and we get to be alive. Our breasts don't define us... our inner spirit defines us. There's really no easy way. Cancer is an awful disease. You're beauty comes from within, and know that you're not alone. Hugs.
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I am so moved that people responded so quickly to me. I'm in tears. I totally feel alone. Yes in clothes I look fine. I was always large D hell when I was pregnant I was an G so I was really happy to be able to go smaller. I'm a full B or C. But I hate the implants. No one in my area did DIEP, now I wish I went to Boston for it. I really am unhappy with the implants even though I made them put smaller ones in. They are a constant reminder and really uncomfortable. My husband just gets so mad at me for feeling like I do. Has anyone ever heard of going for DIEP after having implants removed. I couldn't stand fake nails I should have known that foobs would be 100 times worse.
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I feel so bad for you.I have not had recon yet,but I know the feeling of hating your chest.I had tissue expanders for a total of three weeks and had them out,the pain was so bad.Yes, you can have flap surgery after failed implants,you can also have fat grafting.There are doctors in Connecticut,Boston and New York City that do both procedures. I mention the ones in the Northeast,because you say you wish you had gone to Boston.In New Orleans, they do a lot of reconstructing of botched recon.You do NOT have to just give up,you just need to find an experienced doctor.Check the NOLA thread and the ones on microfat grafting.You deserve to be happy and comfortable.
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Kate33 what a great post! I love it.
Anoym, I'm there with you. I hate my implant side (I went with a uni-MX). With clothes on, heck with a bra on, I look completely normal. It is just naked....not so much. I knew what to expect. I'm a huge fan of www.thescarproject.org I have had friends go through this. I...it is so much...so overwhelming. The post by Kate33 was great. At this point I'm greatly conflicted on what to do. I'm trying to give myself the 6 months that everyone says to give yourself after the exchange. My PS did a great job with matching...at least how I look in clothes. However I hate the implant. Hate it. I hate how hard it is (I was a tummy sleeper prior to all this BS) and I still can't sleep on my stomach. It is uncomfortable, but I can, for me to sleep on that side. I've decided after 3 surgeries this year, I'm done for a year. I will revisit in 2013 and see what I want to do. My PS is going to be disappointed in my not going for the fipples, but I want some time to decide if this what I want.
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Well it's the day after I read your comments which were all excellent and moving. I am so happy to hear that I'm not crazy my PS always tells me how great everything looks. Well he doesn't have 3 8 inch scars on his body. I would love to keep the lines of communication open. I'm going back to PS tomorrow for post of check hope I don't cry in his office again.
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Not sure why everyone doesn't hate implants- that plastic, Barbie boob feeling- and will never understand why someone would voluntarily stick these things in their body (no offense to anyone who has). I really think fat grafting is the way to go. My PS swapped out my implants for smaller ones, did fat grafting over the top of everything, and I ended up the exact same size even though I went from 375 to 225 size implants. The ultimate plan was to do 2 more rounds of fat grafting and get rid of the implants all together. (Unfortunately, other factors prevent me doing that right now.) But for those of you who truly despise your implants there is another answer. The thought of another surgery or surgeries probably seems overwhelming to a lot of you but at least know there are options for the future if your feelings don't change. This is an exciting time in breast recon right now and I think we're going to have a lot more acceptable options in the future- if nothing else when it's time to replace our implants.
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I just had my exchange surgery this past Friday but compared to having the TE's in the silicone implants don't bother me. Of course I haven't tried to sleep on my stomach yet!
My original boobs were a D cup and gravity had moved them further and further down so I've been enjoying the younger looking foobs. Of course I still have no areolas or nipples and huge scars running across them but on the plus side I'm a widow and nobody has to see them except for me. (At least for now).
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Anoym - you may want to post in the Reconstruction forum asking about going from implants to DIEP. There are many women who originally started out with implants but eventually moved to DIEP. From the comments I've read, just about everyone of them is happy that they made the switch.
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I am a happy DIEP camper. I did not do Implants because I wasn't a candidate due to rads and I really was not interested in them anyway. I think it is a shame that PS try to scare you out of DIEP or other Flap procedures because they don't want to or can't do them. Everyone should look at all the options available to them and PS who can't do Flap surgeries should not talk patients out of them when asked about them. I had a PS who couldn't do DIEP tell me so and offered up a TRAMFLAP but said if it were her she would get a DIEP. I had no interest in a TRAM so I had to do my own research to find my DIEP surgeon.
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My PS does do DIEP and he is very good at them, I opted for Implants, dumb me. I was scared of the long surgery. The recovery period scared me. Now I am kicking myself. Trying to think when will I ever have the chance to take 6 weeks off again. I am interested in the BRAVA but again, it is the time, especially since I think it is only being done in Florida right now?
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Hi Emaline....I felt the same way and never did enough research to realize it would take me five surgeries to get my implants complete. The longer recovery from one surgery would have been much better. I just don't like the feel of them under my muscle its always there reminding me there is a foreign object is in my body. Someone had mentioned just having fat graphing I didn't know that was possible.
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Emaline- I believe there is a PS in Columbus, OH doing breast recon using fat grafting. His name is Dr. Dexter Blome. I don't know much about him but you may want to check him out if you're interested. There's some info on his website-
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Hi. Kate...I spoke with PS's PA today and she said the fat graphing to replace whole breast is new technology. I had some fat graphing over my implants but it got absorbed. She also didn't think I had enough body fat but, I don't agree with that. I don't want to do any more surgery now but will continue to look for options to get these things out of me. I'll check out the web sight....Thanks.....
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Kate thanks for the link, when I am ready I will check it out. At this point I need to build up time and money (If I remember BRAVA is not completely covered by insurance?) Plus I'm not sure if reconstruction again, would be covered under the FMLA plan for work. We would need to save the money. Columbus is only a two hour drive, so very doable.
I know a lot of people are very happy with their implants, and frankly they look fine in clothes and all. I didn't realize how physically uncomfortable I would be with one.
Anoym, I wish someone would tell me that I didn't have enough body fat for it LOL. Some how I don't think that will be an issue. I'm right there with you on NOT wanting anymore surgeries but really disliking these dang things.
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anoym- The fat grafting to replace the whole breast is new to most PS's but I believe the doctors who pioneered it have been doing it for almost 10 years or so- maybe longer. As far as having enough body fat- hard to say since I don't know your size. I am 5'4" and weighed 118 when I did my first round of fat grafting which completely covered the implants. That PS did not think it would be a problem to do 2 more rounds. Another PS said it would depend on how big I wanted to end up as to whether or not there was enough.
Emaline- You're correct- the BRAVA is not covered by insurance, unfortunately.
Just wanted to add, for those unhappy with implants, that just covering the implants with one round of fat grafting made a huge difference in how they look and feel. I did not have to do the BRAVA. The PS created space by swapping out my implants for smaller ones and then adding the fat to that space. So it is possible to improve things considerably with just one procedure. Just make sure you go to someone very experienced in fat grafting.
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Kate I know there is a whole thread on this on the reconstruction board, and I should probably read through it more, but I think I am getting confused here and am hoping you can give quick explanation. I know what fat grafting is, my doctor did some of that to fill in from the SNB but can you give a better or more simple explanation of BRAVA works and with the fat grafting? I'm looking on line and am getting very confused.
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Emaline- The whole fat grafting thing is very confusing because there are different techniques all called the same thing. I'll try to explain it as best as I can. The majority of PS's who do fat grafting will just inject the fat directly into the breast. Using this method only about 50% is retained afterwards. There is also a higher chance the fat will calcify and harden. A smaller percentage of PS's believe that first you have to create a space for the fat to go- a scaffold. They either create it by swapping your implants for smaller ones if you have them or using the BRAVA. The BRAVA is an eternal devise you wear that creates suction which expands the breast. It was originally invented to just increase cup size but doctors realized they could take it further by injecting fat into the scaffold. Using the BRAVA takes a lot of committment because you have to wear it for several weeks or months the majority of the day. I've heard it's pretty cumbersome, too.
So there are mixed feelings among PS's about the best method. I just consulted with a PS in Beverly Hills who thinks a mix of implant/fat grafting is the best way to go. He said doing fat grafting alone takes too many procedures and most women don't have enough fat. The PS I had my fat grafting with (Dr. Khouri) uses the BRAVA and thinks it's the best way. So, yes, it's confusing. Not sure what technique Dr. Blome uses. There may be a link on his website where you can ask questions. Did I already tell you about the fat graft site? It's for patients and future patients to share information. It's fatgraftpatients.com and there's a ton of good info on there, too. Let me know if there are any other questions I can answer!
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Emaline-
I too had a uni mx May of this year. Two weeks ago I had my nipple reconstruction, had implant exchange and had an implant put in my good side for symmetry. Do you massage. I have found that my good side doesn't feel so hard since I've started massaging. It feels normal again. However, the reconstructed side will never feel natural, but does feel much better since my PS swapped out my implant for a larger. I also dont have the tugging feeling as much as before.
Tammy
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I hope everyone enjoyed their holidays. I also am not going to proceed with any more surgeries right now. Does any one know if the movement of the implants with any action you do decrease over time. It always feels so weird to be cutting food, mixing, going to gym and having my breasts go up and down. Do other woman's implants do this. It doesn't hurt it's just uncomfortable and strange. I'm in one of the moods to stay in bed all day. Not good. I have no motivation.
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anoym- Hope your holidays were good as well. I'm kind of in a mood to be in bed, too, but have friends coming over. The holidays were very tiring this year, though. As far as the movement- do you mean the way the pec muscles flex? I had a consult with a PS a few months ago and his assistant had breast augmentation and she said hers do the same thing. (Of course, I wanted to say- and you voluntarily did that to your body?!? But I refrained! LOL!) So I'm guessing all implants do this- probably some more than others depending on how tight your pecs are. PT can help lessen this but you've got to keep stretching them to keep them loose so it's a life long thing I think. Just another thing they don't tell us unfortunately. I do think mine has gotten somewhat better in the past 9 months or so if that helps.
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Anoym, yes, it is not uncommon for women who had implants to have them "deconstructed" and get DIEP. Perhaps that is an option for you? You shouldn't have to remain unhappy.
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Kate33: Thank you for your marvelous posts on the grieving process. So helpfull! I've been having moments where I'm 'not really here' and thought I was loosing it.
Also, thanks for sharing about your fat grafting experience and the fatgraftpatients.com web site. Going there next! My PS plans to do fat grafting on me to soften the edges of my implants when I have my exchange on Jan 23 and I've been a bit nervous about it - I've heard lots of stuff about necrosis and lumps. It sound like your experience has been a positive one.
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rubalou- I think the risk of necrosis and calcification comes more from PS's who just inject the fat directly into the breast in large globs. My PS said he's learned the fat survives better when there is a space for the fat to go into- a scaffolding, if you will. I haven't heard of someone having the fat grafting at the time of exchange but this seems to be the way to go. The amount of fat being used could determine how much of the breast needs to be implant itself. I'm wishing you great success on your exchange soon!
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I also HATE my reconstruction. It will be five years for me and I cannot look at my chest in the mirror without crying. I had blm with lat dorsi reconstruction. I hate the way the muscles look under my arms and as time goes on it all looks worse to me! I've wanted to go back to the surgeon but even thinking about taking that step and dealing with how I feel puts me in such an emotional state. Friends and family say I look great, that you can't even tell I had breast cancer. What they don't understand is that we see it every day - it is a constant reminder!
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Maryann- I'm sorry you're so unhappy. I know it can feel very overwhelming to even think about another surgery. It was really difficult to finally decide to have my revision. But 5 years is a long time and surgeons have made some amazing strides in recon. Maybe rather than going back to the surgeon who made you so unhappy schedule a consult with someone new? Though it may be a difficult few months or so fixing what you're unhappy about could improve things for years to come. For me I had to break it down into baby steps. First I researched what I wanted to done, then who I wanted to consult with, then got through the consult, etc. It seemed much more manageable that way. You deserve to get the best results possible and to be as happy as possible, too.
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Kate,
Thank you! You have some great advice. I do need to do some research so I can identify what I want done. I went to one of the best in Philadelphia so I don't know that it is anything he did wrong but I will take some time to look into other options.
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Maryann- Good luck to you!
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