I think I want them out!!!

Lisey

2.5 weeks in from a total mastectomy, with these 450 cc tissue extenders that are completely empty. they hurt really badly and I can only imagine when they get filled. I'm going to be getting chemo soon, I want to recover and be myself. It seems like I'm doing this circus show because society is trying to help me feel like a woman.. but I've never had a huge thing with my breasts and they were huge on my frame. I was 120 lbs, 5"8" and 34DDD... naturally. I looked fake. They hurt. I told the Plastic Surgeon if I did the immediate recon I only wanted waifish breasts.. like As or tiny Bs. and Honestly, these TEs don't feel tiny.. they feel medieval. I wish there was a way he could just remove them and just do some fat grafting to fill in the divits from my ribs.

I dunno... i'm just a mess in a lot of pain and unable to move due to these TEs... and I'm really starting to question the motviation.

Cathy_pa

hey- I am so sorry- I too hate these expanders, I was just jumping on the board as I wanted to ask about the implant exchange as I am scheduled to say good bye to my "not so softball" boobs and hello to hopefully some more friendly soft saline ones. I too wanted to go down in size. I had my bilat MTX 2/23 and have hated them the whole time. My heart is out to you as I assume you plan to do chemo and THEN do the exchange. That's what my "breast buddy" did. She had expanders for 9 mos.

xoxo

BethL

Lisey- I'm sorry you're in so much pain but this is still early. I have had expanders in since December 4. Ugh! It got easier after about 200cc went in and was manageable until my last fill which was about a month ago. My exchange is scheduled for August 2. When do you start fills?

Lisey

my fills were supposed to start this coming Wed. But honestly, I can't take the Iron bra pain of it all.. and the more I think about these foreign things in my body and realize they serve no purpose at all but cosmetic.. well.. I'm getting claustrophobic to get them out asap. I'll rip them out myself if I have to in front of the surgeon if he pushes back on me keeping them in. I'm finding myself becoming comfortable with being flat... I dont' think I'd ever wear a prostetic or fake boob again... they are numb, what is the point? This is me on Saturday concave and flat, - full of pain meds - because I'm in agony with these unfilled TE's under my skin, but feel I can make flat work.

gracie22

So sorry you are in so much pain. It's so soon since surgery; definitely get help with pain meds and see if you can get past the hump of the first month before giving up on the expanders. And now for a rant: Why could they not do one step implants? I just don't get it; when a person has naturally large breasts, there is generally lots of skin to work with (barring skin mets or other complications.) Why the expanders in that case? There is no reason for it and it just pisses me off. I get it that most women don't have large breasts and expanders are a necessity to create space for an implant post mast, but in cases such as yours the PS should offer direct to implant surgery or refer you to someone who is comfortable/experienced with it. The advantage? no months of stretching pain and fills. You are done when the BMX is done. Also, for what it is worth, though I have no issues with going flat, the implants frankly make life easier (no foobs, more clothing choices, even the opportunity for no bra at all when everything is done.) Good luck, and so sorry for your pain.

debiann

You look beautiful! No need to reconstruct if you are happy flat. I did not go the implant route because I could not bear the thought of having something under my muscle, so I totally understand your "claustrophobic" feelings.

Fat grafting may be a good option if you only want a little mound to fill in the divot.

On the other hand, perhaps you want to try one fill, maybe it gets better? It sounds like it can't get worse. I'm sorry you are in so much pain. I hope things improve soon.

You truly do look great flat. I can't imagine a triple D on your petite frame.

macb04

Lisey, sorry to hear you are suffering somuch with your expanders. I understand about that. Had a TE under my muscle. Couldn't open a bag of chips. Was in constant misery of iron bra feeling. Tried fat grafting instead. Had TE out, but only suceeded a little with the fat grafting because of inexperienced PS and infections due to radiation fibrosis. Finally, new PS put another TE OVER my PECTORAL. Much, much better. Barely felt the fills. My pectoral muscle healed. Now I have an OVER Pectoral 495cc Mentor Anatomic High Profile Implant. No rippling or motion artifact and no IRON bra feeling either, Yay! I have a thread going about this with 12 PS's listed from across the country who are willing and able to do OVER Pectoral implant based reconstruction, even for rads patients like me. I have several research studies listed on the thread as well. I just wanted you to know you have options that aren't so painful. You look beautiful in your photo, if flat works for you, then go for it. Best of luck.

Lisey

appreciate all your responses. Yes, I was huge. And honestly, they HURT like hell then too because of how cystic they were. I was kinda excited about the idea of never wearing a bra again becuase underwire was a MUST for me. (now look at me with this Internal Iron bra.. that is 10 times worse than any underwire).

I am intriqued by fat grafting.. I do have some saddle bags afterall they could take from. I'm pretty petite so my ribs are gonna show big time once these TE's are removed.

I'll keep you posted when I talk to the PS on Tuesday.. (wish it was today). Also, the ONLY thing that helps with the pain is Valium... a controlled substance. Do you think I could get addicted? I do not want to deal with withdrawals of that either. Can't I just have none pain free movement rather than this new iron bra?

debiann

I am sure you gave the staff in the operating room a good chuckle, lol. I named mine "weak link" (cancer side) and "collateral damage"(no cancer, but sorry your going too), but didn't label them. Great idea! The over the muscle implant sounds interesting and much more comfortable. If I had that option perhaps I would have tried it. I did DIEP instead.

Itzy

Lisey, you just couldn't get any more adorable than you already are!! I'm old enough to be your mother, and went into mastectomies with an A cup. There were a number of reasons I chose against reconstruction, but certainly one of them was wondering what the sensation of a foreign object under my pectorals would be, and then what if I just hated the way they felt? So, it sounds like you are living one of fears I had about reconstruction.

Reconstruction or no reconstruction is totally subjective and personal. We each have to make the decision about what we want, don't want, and how much of a price we are willing to pay to achieve that. My biggest question of the surgeon at the point where you find yourself now would be what is the downside of removing them now, and am I burning any bridges if I should want reconstruction in the future? You are young, and there may come a point in time where you feel very differently about it.

I am so sorry that you are having to go through all of this. I really do wish you the very, very best as you make these difficult decisions.

kcat2013

Lisey, I'm sorry you are in so much pain. I had a significant amount of pain from my TE's and was still very miserable at 4 weeks post surgery. I had serious "buyer's remorse" during that time and really really regretted starting the reconstruction route. Like you, I wanted them OUT and did not want to continue. I did chemo after surgery so there was no time to do another surgery to remove the TE's before chemo started. However, around 6 weeks things turned a corner and the TE's went from being painful to just weird and at times uncomfortable. By the time chemo was over and I started talking with my PS again about surgery to place the permanent implants, I was glad I stuck it out with the TEs and felt good going forward with reconstruction. And 2 years out from having my implants in, I'm super thankful I did continue with it, even though it was absolutely awful for awhile.

So, I just wanted to encourage you that the pain will probably get better. Also, don't let your PS push you to hurry through your fills. Doing large fills too soon after surgery can be painful. My PS said there was no hurry and we did slow and small fills. Whatever you decide about your TE's and whether to continue on, don't feel rushed or pushed into a decision--it's your body

pab

Sorry for your pain. I did not read all the posts but hopefully you've talked with your PS. tissue expanders are not for cosmetic reasons they are temporary and are used to slowly expand your pec muscles. I've had mine 1 year the 7th of July. I go in for my exchange tomorrow!!! My expanders were very tolerable until I got them filled all the way. So the last month or so they have been a solid B maybe small C and they were not comfortable. I'm looking forward to softer boobs!! Good luck and I hope you are doing better

Jpicch

I can only speak to my experience but I had no reconstruction and I'm a happy camper. I think others gave gd advice about possibly giving it a bit more time. But you ARE adorable. Just love yourself and make a kind decision for YOU

Lisey

I went in today and had my first real meeting with the plastic surgeon since getting the mastectomies. His assistants have seen me weekly and know the pain I was in. I even called his nurse sobbing last friday that I wanted them out. He walks in today and said he had no idea and was like a deer in the headlights. I have determined I can't take the pain another weekend period. I started sobbing about the pain to him and told him if he can't find space to remove them this week could a different surgeon do it? He started saying how booked up he was. So I told him then I would go to the emergency room because the pain was so unbearable. He said "im sorry you feel discomfort."... DISCOMFORT????!!!!! WTF is he thinking.. this is like labor contractions happening every 5 minutes in my pec muscles.

So with that I refused to leave the building until I knew a day I could get them out. He came back in 10 minutes late and said tomorrow morning. He refused to discuss how he'd remove the TEs and when I asked him if he'd make sure I didn't have this dog ear or extra skin they were leaving for the implants he kind of shrugged and said something about swelling and having no idea how it will turn out. The whole meeting with him lasted about 5 minutes and I can tell he's mad I dont like what I got.

But I feel so SO lied to... I told him from the beginning I wanted to be tiny, little - kate hudson A, kiera knightley. When his assistant showed me the implants that would have ended up under my muscle they were at least high Bs or Cs... Honestly, when I told him I wanted to be nearly flat, he probably should have told me TE's and implants were NOT a good solution for me instead of trying to sell me on some type of reconstruction.

I am excited and nervous to get these TE's out... I hope my muscles recover ok, and I hope my pain is at least reduced... I know I'll still be tight from the BMX, but hopefully the constant spasms and endless iron bra will go away.

Wish me luck for tomorrow morning.

kcat2013

Lisey, good luck with your surgery tomorrow morning. I imagine you will feel better quickly after having them out.

It doesn't sound like your PS is very good at communicating with you and listening to you! Also, I would NOT have been happy about not seeing the PS for post surgery visits--it sounds like he and his staff are not doing a good job making sure patients are getting the care they need. I've found that nearly all my doctors (cancer or otherwise) seem to skirt around actually referring to pain as "pain". Drives me crazy! "Discomfort" seems to be the common word used for pain!

I hope your surgery goes easily tomorrow and your pain lessens considerably afterward! Keep us posted on how it goes!

pab

Good luck tomorrow! Be strong! Keep questioning the PS--it's his job!! (oh and you're paying him!!) they tend to forget that;)

Jpicch

Good luck! I am sending good thoughts and prayers!

I think you'll feel better quickly!

anotherNYCGirl

Lisey, - I understand your pain, - and wish you luck with the procedure in the morning! You are beautiful in the photo!

My PS also minimized the pain aspect, BUT he was with me at every office visit and never had a nurse or PA see me without him overseeing it directly!

Wishing you a speedy recovery !!

debiann

Good luck with your surgery! Heal quickly and keep us posted.

Lisey

I wanted to let those considering my choice that I have now gotten the TEs removed and am now at home recoverying. My iron bra agony is GONE. I only feel the hurt of the stitches, but no more turtle shells with spikes upon my every move. Taking them out and going flat was an excellent solution for my health and QOA.

debiann

It is so good to hear that your pain is gone! "Turtle shells with little spikes" sounds horrible. Totally confirms what I thought implants would feel like. So happy I never tried them. Wishing you a speedy recovery!

anotherNYCGirl

I so happy to read that you are feeling better! Rest up and recoup!

Arizonahiker53

Been reading some of the recent posts and wondering if anyone has had a "good experience " with TE and implants, and if you had a "good experience" would you recommend a cosmetic surgeon that just focuses on breast reconstruction or one that specializes in several different types of cosmetic surgeries?

I chose to delay reconstruction and am one month post chemo treatments and currently meeting with plastic surgeons to think through implants. I am currently 50/50 on the idea. I have a thin frame, and except for time period over 20 years ago when I was pregnant, I have always been small chested( 36A ) and am active runner hiker and never been overly pre-occupied with my breast size. I do not like looking at the scar from my L Masectomy in Feb . I have read the "patient reviews" on two of the plastic surgeons my surgeon recommend and have seen some pretty bad reviews, both are surgeons that specialize primacy in breast reconstruction.

Lisey

I wanted to be an A cup, but they simply don't make A cups for implants. The TE's are horrid, I'm also very pain intolerant and so what was agony to me would probably be manageable to another. I'm happy I got them out. I have not met many women with implants who don't complain when trying to exercise and run... and have never met a woman with size A implants.

Honestly, all the frankenboob surgeries seem really aggressive and scary to me and I've been on these boards to see a large rate of failure and infection. I'm excited to see what my chest looks like flat and nippleless... if it's not smooth, I'll get that addressed, but then I want to try some temp tattoos and see what kind of cool design I can use. Since I'm so pain intolerant I doubt I'll ever get real tattoos, but that would be awesome if I could somehow do that.

By the way, the OR Nurse was probably an AA at the largest and she looked like a ballerina and gorgeous. I think women with no or tiny boobs can be stunning and wear much cooler backless outfits. I plan on losing just a bit of weight from being a mom and would like to wear more exotic items like scarves and stuff that I never could wear before with DD's and nipples.

Itzy

AZhiker,

As to your question of finding a good plastic surgeon for breast reconstruction, a couple of ideas.

After my mastectomy, I attended a breast cancer group at a local Gilda's Club house. I was the only one in the group who had not had reconstruction, and certainly they were a wealth of information about individual plastic surgeons, along with breast surgeons and oncologists, in my local area.

If there is no such group available in your area, my next inclination would be to seek out a consultation at the closest NCI-designated center of excellence. They will have well trained plastic surgeons doing breast reconstruction almost exclusively, and offer you the opportunity to explore many options.

I am of the belief that reconstruction is completely appropriate for those who are well informed of the downside risks, and are willing to accept those risks in order to achieve what is very important to them. In my own case, the downside risks, including medical, work-related time off, and future medical expenses. With my current insurance, I have the potential to incur $5600 out of pocket expense each calendar year. I have had 2 layoffs in the past 10 years, and the possibility of ongoing, very significant medical bills, along with insurance uncertainty, was really the final thing that made me recognize reconstruction was not for me. If I would have chosen reconstruction, had complications, needed FMLA time off, and on and on, I would have been a very unhappy camper.

Itzy

Lisey,

I'm do glad that you have found relief from the TE pain, and are so very forward looking. I love how you see new fashion possibilities for yourself. Carpe diem!!!

I had never heard that there are no A-sized implants. I was an A cup, and when I consulted with the PS, he said, "you know, we can make you bigger". I just laughed and thought it was just an odd sales pitch, thinking that would be my desire. I never even thought, that there is no such thing as an A sized implant. Wow, that is genuinely mind-boggling.

exbrnxgrl

Lisey,

So glad that you're comfortable after the te removal. We each react differently to those things.

Arizonahiker,

Let me start off by saying that those who post to message boards generally do so when things are not going well, in far greater numbers than those who have few problems. This is not only true of a bc forum, but just about any health related forum.

I had one step implants (no te's) placed 5 years ago after a nipple and skin sparing bmx. After the normal healing period, I have not a single complaint. I look exactly as I did before (loved my natural breasts) and have no pain or restrictions on physical activity. I chose a ps who was very experienced in the procedure, answered my endless questions with patience and respect and was very clear about pros/cons and what could go wrong. Yes, women do have bad experiences with implants but untold numbers don't! Take care

Kathleen21

thanks for your postive response! I am 3 1/2 weeks into the expanders and I am very uncomfortable. I will have these for approx 9 months due to radiation. I will try to hold out. I wonder if the stretching exercises we were given should be done more often? Ugg

VegGal

Tiny implants (100 cc) do exist and are used commonly, especially for augmentations.

JessieJake

I am intrigued to read about your experience as it's so opposite to mine. I was a no-cup prior to having a BMX. Seriously, my surgery notes reference the microscopic work to remove my tiny, yet 100% dense, breast tissue. I know (even more after reading your description) that I could not have tolerated messing with my chest muscle so my TEs are above muscle - filled only to 200cc. I'll be lucky to be a 32a or 32b with implants (my rib cage is only 28"). I was not even a 32a prior to BMX. I can appreciate the idea of body frame not meant for big boobs. I'm just waiting for my exchange surgery and feel 99% normal. I do all physical activity and feel fine even with TEs. There was discomfort during the healing phase but I can barely remember it now. I can only imagine implants (small) will be better.

I think it was the picture you posted of going flat that inspired me to respond. I spent my entire life that way and felt so limited in clothing choices because I felt I looked like a boy. Of course that was me and my own perception of what I looked like. The idea of even having a small chest that would fill out the smallest bra is exciting to me and I always describe it as I will finally feel feminine. Friends who are on the opposite end of the spectrum always said they were envious that I could go without a bra. However I felt I always needed an uber padded bra to look like a girl so I never enjoyed what they thought I could. Anyway, I just wonder if you had had the option like I did to do TEs over the muscle if you would not have had a different experience. The physicians assistant who did one of my fills has implants that are less than 200 mL. She actually looks as small as I was before I had the BMX.

But, I am envious of your confidence and you look great. I just am sharing from my perspective of the grass is always greener.... I wish I could have loved being tiny, but having BC threaten sent me on a path I never imagined.

I hope you heal well and feel wonderful. Enjoy that freedom!

Lisey

Jessie, I was told that implants over the muscle will prevent them seeing any lumps in the muscle going forward and be detrimental to catching a reoccurance... so no they refused. Plus the General Surgeon was going to take as much breast tissue and skin as he could because he said his job was to prevent cancer being missed. Thus the Plastics guy had a really tight skin structure to work with. It's also standard at least at Kaiser, to remove the breast fascia over the muscle as well so implants wouldn't have any support except for my skin. The do it under the muscle to be able to see lumps and still do mammos, and also to avoid gravity and having issues with the skin. They simply won't do it above the muscle in the case of mastectomies where I'm at.

I totally get about the feminity thing. Being as curvy as I was, my most 'sexy' feeling was when I wore yoga pants and a tank top (with a bra) just around the house. I felt sexy in a bellydancer sort of way... and I used to be a bellydancer, so the softness worked for me. I got a lot of attention with the cleavage and curves. My breasts though had been getting more painful and larger and when this all occurred I was hell bent on being more svelte and not so jessica rabbit. Initially, I asked about smaller enlargers and the PS says they have to fill the frame of your body... (I'm 34" around) well that's BS because I've known women much larger around than me with much smaller boobs.. He said something about having hockey pucks sitting out on a full rink... looking odd. He just assumed I'd enjoy the Bs/Cs... And if I hadn't had the pain I did, I may have. I'm simply not good with pain or the idea of these foreign objects in my body that I actually have to massage to make sure they don't calcify, encapulate, etc. I have never been one for giving myself massages like that. My cousin did the TE/ implants and she gives herself massages to make sure they don't harden...

So on the flat pic I posted, I feel still feminine... but not 'SEXY"... I told my husband that I'm going to have to find a way to channel sexy without my typical soft curves. Shit.. I'm gonna have to actually work out and try to get rid of the soft.. and channel sexy warrior hard ass flat amazon woman in some way. It's all hard... and frankly, if I lose my hair (which can happen on Tamox), I think I'll be a wreck of not having any feminitity.. clearly it's in my hair for me. So I guess if I can lose about 20 pounds (which I'm hearing is impossible on Tamoxifen), and go more slender/ballerina, I could find a way to channel sexy.. but I'm sure not there yet. Sexy is all in the head, I know... so this is just something I'm going to have to figure out... It would probably be easier to do if I felt like I was over this ordeal and now just in the clean up stage.

I'm 3 days post TE removals and just with the flat chest incisions. They are tight as hell, but at least they don't feel like spikes of death when I breathe. I'm able to do more stretching than with the TEs, and I'm hoping that I don't get lymph issues with swelling later on.. The clothing options do excite me.. I've been googling backless tshirts and that may be fun... Along with wearing scarves only as wraps / bandeaus... Gotta tone up my arms obviously, but hell, I'm now 41, and not in the dating world, so really... I don't feel much pressure from anyone but myself to rock it. and I'm not dealing with any of that right now because I just want to know I'm clear and not going to stage 4 anytime soon.