Repeat surgeries? Please share your experience -
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I had no radiation and the implants that were put in at the time of the BMX were larger (both in cc's and in diameter) than my original breasts. That was not my plan.
I have some rippling all the time along the upper, inner areas. One implant has rotated (anatomical) so that the thinner area is now on the outer edge instead on at the top. My nipples are now pointing east and west. And the view if I bend over is horrendous.
Add to this the random discomfort - sometimes burning, sometimes shooting, sometimes squeezing - and I wonder about what to do. Since the implants are just under my skin, I feel them a lot. Fat grafting was recommended, but my BS wants me to wait.
I don't really want more surgery - of any kind. I fantasize sometimes about getting this fixed to something that looks and feels normal. But in my "glass half empty" way - I'm so afraid that I'll end up even less pleased. I don't want to trade this for something worse.
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So, I had mastectomy 14 years ago on one side with chemo and rads and then another mastectomy a year ago on the other side and decided to have reconstruction for both.
I have had fat grafting, TE's placed and then 4 weeks ago the implants in. Round and high profile. They are smaller than I wanted. But still, my surgeon did a good job. They look symmetrical and even in size. I have been wearing a compression bra since the day of surgery 24/7 as recommended by the PS. She said I could get a very supportive sports bra too but I must wear 24/7 for 6 weeks with no jiggling allowed. And no carrying anything over 10 lbs. And no exercise that will cause bounce. So, I have been doing this. I got a sports bra today from a mastectomy bra shop and it feels tighter and more supportive than the compression bra. So thats good.
Anyways, I am really looking forward to not wearing a bra all the time. After reading some of your stories about rotation and rippling and pain and several exchange surgeries of different implants, I am beginning to wonder what I got myself into. I am beginning to wonder if I will always have to wear a bra 24/7 for the rest of my life. I sure hope it goes well from now on.
wallan
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@ Wallan. Had my BMX Jan 2017 and still wear either a sports bra or one from the shop outside the PS office. I can't get comfortable sleeping without wearing one. I think that sometimes in my mind if I don't they will lose the fat that is in there. So I think I look at the bra as a mold.
Just talked to a good friend about her Flap surgery. She is on the heavier size and after 4 years is going in to have a large purple scar removed. She said it's very thick because she had some complications after surgery. It never healed properly. in fact she was admitted to ICU for a few days after her mastectomy (only one was removed). She advised me not to go through with it but, everybody is different. I know when my mother was alive and after surgery it took her longer to heal because of her weight. She weighed 240 lbs. She also spent time in the ICU. I'm about 140 lbs and not concerned about my healing process or the pain. God know that I know how to deal with pain. Even the morning after my BMX, the breast surgeon and PS came in and asked if I was in pain or in any discomfort. I told them no. They looked at each other kinda of amazed and said they were only asking because I had the head portion of the bed raised with my hands behind my neck. They couldn't believe that I could raise my arms and have no pain. So like I always say, everyone's cancer and treatments are different. No two are alike. But, reading all the stories and taking a little from one and some from another is good for me. I find an answer in almost everyone's experiences.
Keep up the good progress and I wish you nothing but the best.
Anita
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Those who have had multiple surgeries, did you have nipples over your scar? And if so, did they use a different place to cut in order to not impact the nipples? I know different people have different incisions. Mine go right across where my (future) nipple tattoos will be. I have implants, so I know at some point those will have to be replaced. Obviously questions for my PS as well, just curious what I should be thinking about asking her.
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@Lynae, my appt with my ps is actually tomorrow. It is technically my 3 month post op follow up, but I called the receptionist a few weeks ago and asked her to schedule more time as I want to discuss revision. We had discussed it last time I saw her in early January, but she wanted me to give it more time before making firm decisions. The extra time has not changed my mind. I too, don't like my implants. Granted, they are more comfortable than the ones she replaced, but mine are over the muscle not under. That along with my thin skin and slender build (according to the ps) cause me to feel the implants more. My discomfort is mainly on the medial edges going down toward the IMF. I am going to ask for my implants to be downsized by close to half. They are currently 440cc, a full D cup on me. So, hopefully my ps is agreeable to swapping out for 225cc and putting fat in to take up the difference. I have researched a lot and talked with ladies who have had this done 5 years ago and are still happy with the results. One lady had her implants downsized once, and then some months later went back and had them completely removed and more fat in their place. If this is something you are considering, be advised not all ps are experienced in the procedure so you may have to hunt for one. This is not something that can be done in one surgery. The women I spoke with had 4 procedures on average. I have gone through one, which was downsized from 470cc to 440 and fat grafting. Honestly, even though I did have drains, the recovery was very easy. Actually easier for me than my 1st exchange. The added fat really helped to cushion the edges and diminish the pain but I need more.
I don't know if you are experiencing additional pain from having the implants behind the muscle, I have heard it is more uncomfortable than implants over the muscle. There is a thread about implants over the muscle I subscribe to, and some ladies there have had revisions from under the muscle to over the muscle and talked about getting a lot of relief. I too am sitting here looking at probably another year of no nipples, it is really getting old!! I am thinking of getting some prosthetic nipples so I don't have to look at it anymore. I wish you all the best!!
@Brave, I had the problem with my implants flipping over backwards. Similar to yours rotating sideways, it was caused by the ps not making the pocket tight enough. For me, it was very uncomfortable and getting it fixed, while I did not relish the thought of getting more surgery was a HUGE relief!!! Your last comment leads me to believe you may not have much confidence in your ps. I had told my original ps about the implants flipping over and at first he dismissed it, said I was just noticing the swelling subsiding. I finally got him to really look and see that the darn thing was backwards, the projection side facing my back. His proposed solution was to take it out and put in bigger implants. He already had bigger implants than what I wanted in there. When I heard that, and the fact that he does not do fat grafting, I made my mind up I was going to find a ps that was on the same page as me. Have you considered getting a 2nd opinion? Fat grafting took care of all my rippling and also gave my skin more support alleviating a lot of pain. Deciding on more surgery is such a personal decision, but I feel bad that you are resigning yourself to suffer because of fear of a worse outcome. I just want to give you hope that a revision with a skilled ps (skilled in revisions) could give you a great outcome and pain relief.
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Shoregirl - Thanks for your encouragement. I often feel bad to even complain. When I look at some of the photos online ... I got off easy. I have my skin and my nipples. I look normal in clothes and not bad in a swimsuit if you don't look very close. And sometimes I feel fine - nothing, normalish.
But sometimes it's just really uncomfortable. I'm so aware of my chest at times.
I kind of rushed into the PS I had. He was nice and worked with my BS and did the surgery that I wanted (DTI). But I won't have him do another one. Not that he's bad - I just want someone who has LOTS of experience in breast reconstruction.
But for now - the BS says no to fat grafting. I'm going to have the area of fat necrosis under my one nipple assessed again since it seems different to me now. Always something to worry about ...
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Brave, we are so similar! I am hyper aware of my chest too. I also rushed into my PS. He had good credentials and was in practice with my BS. He was nice and I actually switched to him pre BMX from his partner because I didn't like the partner's abruptness and he was always walking towards the door while I was asking questions. You make a really good point about wanting a PS with LOTS of recon experience. I didn't know about the fat necrosis, I'm sorry, I didn't know you had done fat grafting. I'm so glad you are having it reassessed and hope it proves to be benign. And I don't think you are complaining at all!!
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I also found a lump after have my BMX. My breast surgeon told me that it was fat necrosis. She never did a biopsy just told me to massage it and it would most likely dissolve. It's still there but, it doesn't bother me and can't see it. Now I'm wondering if a biopsy should have been performed? I guess since the breast tissue and nipples have been removed, it's assumed to be fat necrosis. Yet, it was fat conserving surgery, leaving very little in.
Fat grafting worked well on the one breast but not on the radiated side. Had this procedure done twice. Yes it true to find a doctor who has many years of experience in fat grafting. Because, PS do a lot of different types of procedures.
I like my PS (second one, first one I was rushed into) but, I have decided to go with the DIEP flap and have an appointment with a woman in the same practice. To me I think that a woman would have more compassion about a sensitive subject like this. She may decide that it's not in my best interest. Then I'll get another opinion.
Shoregirl is right, your not complaining, just looking for answers. We need to be involved in our treatments. Who cares more about our bodies than we do?
Positive thoughts coming your way. Good luck.
Anita
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I haven't had fat grafting at all yet. The questionable area was assessed 3 months ago. First with an US and a plan to "watch and wait" or biopsy - my choice. But they made it sound like biopsy would be difficult and risky due to location and implants. They ended up sending me for a mammogram and seemed confident about a fat necrosis diagnosis. There was no plan for follow up unless something changed.
I'm not really too concerned about it being cancer. It likely is necrosis - they were very aggressive in that side during the surgery and my nipple was left quite bruised with blood on it. It's very possible that the tissue underneath just died and left this lump behind. But it seems more spread out now and the nipple itself looks different. So we'll see what they say ...
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@Brave ~ I had not heard of fat necrosis unrelated to transfer. I learned something new today, there is so much I don't know!! What about MRI, is that an option?
I went to my PS today. She is on board with replacing my 440cc implants with something in the 220cc range, and lower profile. Then fat, as much as she can depending on my insurance acceptance. I told her my ultimate goal is no implants, but the much smaller implants cushioned w/fat may give me the level of comfortable I am looking for. Her only hesitation is that I don't have a lot of fat to work with. I assured her I am totally fine being smaller. I actually had a reduction back in 1993. Went from a DD to a B cup and I loved it!! Over the years my crazy boobs grew back though!! Unfortunately, I have to have minimally invasive back surgery (Transforaminal Lumbar Interbody Fusion) April 4. My neurosurgeon said I could plan on reconstruction/revision 3-4 weeks later but PS wants to wait more like 4-6 weeks.
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lynae, I have implants over the muscle and I feel them all the time. Part of that is because I have post mastectomy pain and swelling in the affected breast. Also because I feel they are too large and too heavy. You are fairly fresh out of surgery. Maybe with time the feeling will settle down for you? I didn't like my implants right away either and still feel the same way 4 years later. When it's not hurting, which is rare, they feel comfy enough - almost like little pillows. But I have to wear a bra all the time or they feel droopy. I wish I had gone smaller. The pain comes and goes mysteriously for no reason - not bad but just enough to remind me that they're there. Just wish I could forget about it and get on with my life. I am considering revision with smaller implants. Not sure if any of this is helpful for you. I think fat grafting is a great option if it works for you. I realize there are lots of variables - all the stars must be aligned and you must have right PS, etc.
All the best to you!
***I should add that my pain or swelling extends to my armpit and into my side by my bra which is probably due to scar tissue.
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I just went through multiple ultrasounds, a biopsy, an MRI and a mammogram to see what this new lump near my nipple is. I had a bilateral nipple sparing mastectomy in 2015. This lump is new. After all these tests all they can do is tell me it isn't cancer. The best guess is fat necrosis. Which is great news, but I kinda wanna know what it IS for sure. I feel for ya. I am considering a revision also to my anatomicals. Lefty has drifted and is lower and too far away from righty. if I go forward with the revision they can remove that weird lump and maybe tell me what it is! I have moved since my original surgery so I have to find all new docs. It is exhausting, isn't it.
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Lkscolo - Thanks for sharing your info. I haven't been able to schedule the repeat US and mammogram yet because my BS added "biopsy if necessary" and they have to have the time and staff for that. The scheduler is out sick!
I really don't want a biopsy. They were somewhat concerned about whether or not the nipple would survive after the surgery - it didn't look so good for a while. I'm worried about healing and infection risk. At the same time - it seems weird that it feels so different.
I can't believe that it would be cancer. I had a pCR. I had a BMX. I just finished Herceptin in January. Come on! But the worry never ends.
So you have a new lump almost 3 years after BMX? I'm with you - I hope they can remove this if I have a revision. And, since there are a variety of reasons that I would consider a revision for already, I guess this could push me there.
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Well, folks, here I am again! My most recent revision was last August. I had both anatomicals replaced with new round silicon implants. Prior to this surgery, I had problems with rotation and rippling. Immediately following, I was pretty happy with the results. But now I'm, for the lack of a better expression, "grossed out" at the sight and feel of my breasts. My skin is so stretched and taught, my nipples/breasts are totally uneven, and if I move a certain way, bend over or, God forbid, flex my pectoral muscles, my boobs scrunch up in weird disturbing ways. I just feel ugly. I wear a sports bra 24/7, but I thought I'd be able to go bra-less occasionally. Not so. Because my breasts bulge so much at the outsides, my choices for summer dresses are limited. And my nipples are permanently erect, so the uneven-ness of them is impossible to hide. Ugh! I'm considering going back to my PS to see if anything can be done.
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Wow, that sounds awful. Unless you are 100% in love forever more with your current PS, I think you might be better off with a second opinion.
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wanna cookie I agree totally with VegGal...unless you have papers committing you both to forever start researching am different surgeon and don’t feel guilty one bit. If you had a man go out a seek a woman she may be more empathetic. Sometimes men think we are being overly critical...I had to find a different plastic surgeon and he is top of the line and state of the art in the field of reconstruction of the breast. Had I known then what I know now I prob would’ve chosen him form the beginning. Ask the ladies out there for recommendations in your area. Whippetmom and SpecialK have a wealth of info to offer.
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VegGal and Imkopy2 -- I agree with you, but I belong to an HMO, so I can't really shop for a different doctor. I emailed her this morning and told her that I thought something might be "going on" with my implants and that I thought she should see for herself. She had her assistant call me to make an appointment. I'm scheduled for next Tuesday. I'll let you know what she says.
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I wanna...
It's probably best that you go in and show her what's going on especially since you are limited with insurance. A lot can be fixed when it comes to implants, but the unevenness is definitely concerning. Are there other PS's within your network that you can consult with to get an idea of their experience?
My heart goes out to you. You have been through so much!
HUGS!
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The first PS (man) was a suggestion from my BS (female). I had no one in mind and since they worked together I thought it was a good way to go. The results that were done immediately after the bilateral mastectomy were horrible. I was getting nowhere with this guy. He thought they looked great. So I made an appointment with 4 other PS. Two didn't want to touch me and fix the problem.. One said a different implant could work. The 3rd said that fat grafting was all that I needed. After 2 fat graftings I'm still not happy. I know that my case is different because I had radiation 14 years ago on the one breast. That is the breast that doesn't want to hold the fat.
Now I'm going to see a woman who might better understand that I don't want to look at my breast let alone my husband. My bilateral mastectomy was performed, January 31, 2017. Add on another surgery because I developed an infection after the first FG.
Yes I'm tied and I know now that I'm not the only one.
Out of all of my friends, I was the first to have breast cancer back in 2003. The only problem is, none of them had radiation. So I went to this last PS because she had great results. Not ture for me.
Everyone is different. Seek as many opinions and research the doctors. You want to keep away from the PS that do four dozen procedures. You need someone who only does a few and breast reconstruction should be first.
Now I know that I should have went with the flap. If I did, I would have been done with it. Fat grafting is still fairly new. Although, they have made progress, it still needs more time to make it perfect.
Like I said, everyone is different. Get all the information that you can. Check out all the doctors and what their patients think of them. So much to do when we are going through all of this. It overwhelms me all the time. I'm so stressed about it that I have been seeing a dermatologist to grow hair back, patches of hair that I lost.
That is my story through hell and I'm still going through it.
The best of luck to all.
Happy St. Patty's Day.
Anita
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Anita--your male PS telling you that your boobs look great reminds me of my husband. Somehow he doesn't notice or care about the unevenness and all the other flaws, he just sees two large mounds, and that's good enough for him.
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So I saw my PS yesterday and discussed my complaints with her. She had reasonable explanations for everything. My breasts/nipples are uneven because one of my breasts was larger than the other to begin with and there isn't any good way to alter my breast in order to re-position the nipple. I guess I'll just have to wear band-aids over my nipples if I go bra-less. She told me that because I have relatively large pectoral muscles, and almost no fat there, it was better to place the implant under the muscle. She said she would move the implants over the muscle if I wanted, but she showed me pictures of what it would look like and convinced me that what I have is the lesser of evils. (I don't have enough body fat to do grafting, and alloderm isn't thick enough to smooth out the awkward line where the implants meet muscle.) My boobs look hideous when I flex my pecs, but with the implant on top of the muscle, they'd look hideous all the time.
She told me that if/when a better implant or technology comes out, she'd keep me in mind.
I'm waiting for final approval to view and post pictures on the picture forum. Once I have that, I plan to post pictures of my breasts.
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Twenty years ago I was a bodybuilder. I worked every muscle in my body. My thinking was if I worked my chest that my breasts would be more defined. Instead, I lost all the fat from my breasts. I had just nipples. Went from a C cup to nothing. Then I had breast augmentation done. They placed them under the muscle but, told me that I could not work my chest muscles again because they could or will shift. 20 years and they still looked great. That in itself was amazing.
My first breast cancer was 5 years after the augmentation. The breast surgeon told me that the implants pushed the lump up closer to the skin so that is why I felt it. Who knows if that was the real reason. At that time I was going through perimenopause and both breasts were hurting so much that I had to wear a bra all day and night.Walking hurt. So when the one breast stopped hurting, I was in the shower and felt my lump. So when it came back I decided to get both removed along with the nipples.
Fourteen months after my bilateral mastectomy and going to see my fourth PS, I'm still not happy. I can feel the implants that were placed under my muscle and I stopped lifting weights a very long time ago.
I want the implants removed and want to go with the flap. All my friends have had their PS perform this and they tell me that they look and feel like what they had. If I had only knew this 14 months ago.
They told me when you gain weight or lose weight, they react just like your normal breast do. That is what I want. To feel normal again. Not having to shift my breasts every time I roll over at night because the implants shift.
Anita
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So sorry you didn't get great answers, Cookie. Check into silicone nipple covers on Amazon. I got some and they really are nice and keep things smooth.
Now, about the fat grafting. My BMI is 19.2 and I've had grafting twice. My PS had no problem finding fat and told me that only the most emaciated of women have no usable fat. Perhaps your PS is not confident with the procedure. Of course you want a confident surgeon.
I hope you can some solutions. Keep looking for answers!
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Cookie, I agree about the fat grafting. My first PS was very limited or fundamental in his approach in FG. I would keep yourself up to date about the latest technology in the field of BC. ( we are our best advocate) As for the sundress thing check with a seamstress and see if they can sew in one of those pads (like you would find in a sports bra or what they sew into a cocktail dress) this way you can pre vent blinding anyone with your high beams. My implants are also under my pec, my left side is animated if I flex...I have actually been using weights nothing insanely heavy but I have noticed that things have relaxed a bit more and I have a better shape. Please check with your doctor first I am over a year out and my surgeon said it was fine as long as I listened to my body. There are still things I will never be able to do but I take very small victory I can get. Good luck sweetie!
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Cookie,
I have implants over the muscle with alloderm and no problem with flexing or ridges. I had a very skilled PS who was highly advanced in his technique. I know he used A LOT of alloderm and then topped it off with a little bit of FG. They look and feel very natural. Wish I could give some you of my fat - I have a lot of that, too. I can see her point about being unable to re-position the nipples. On a positive note, your hubby is happy, but we all know that's beside the point!
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I'm really petite and was told I also was not a candidate for FG. I could use a little as I have minor rippling -- but even if I did have the fat -- I don't think I'd go under the knife for this little bit.
I used the silicon nipple covers prior to BC, too, because I was small and could then go without a bra. So they are great. Also purchase on Amazon. Walmart has them, too. I used these crazy nursing ones with my TEs. Someone along the way told me about them. Because the normal silicon covers would not work on the super/duper round TEs (and I never expanded a lot, so pretty sure everyone would have this issue).
Good luck to all!
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So many different approaches to reconstruction! Thank you all for your input.
Anita -- Did they leave your original implants in when they did the mastectomy? There's a big difference in appearance between implants in a reconstructed breast, and an implant in an augmented breast, because any breast tissue lying over the implant is better than none.
VegGal -- thanks for the tip about the nipple covers on Amazon. I'll check them out when I'm done here. So, your BMI is lower than mine and still you were able to get grafting. Interesting. I was sort of glad when my PS shot me down the other day and made me feel like I'd exhausted all possible treatments. At least it was settled and I was prepared to accept it. But now, you've gone and opened that door enough for me to peek inside at wonder and discontent again. lol.
ImKopy2 -- Thank you also for the suggestion about going to a seamstress. They can indeed do all sorts of magic! I'm super glad to hear that your animation distortion has relaxed a bit with weights/exercise. My PS told me there were no restrictions on my exercise or activity, so I need to get back in the gym. Before the whole BC thing, I was in awesome shape. Particularly my upper body. But the animation distortion has kept me out of the gym because it's such a disturbing reminder. I need to get over that.
bc101 -- How is your natural skin? Healthy and supple? One of the reasons my PS chose to place my implants under the muscle is that I have terribly thin stretched out skin. Blech! My skin has always been crappy.
EastcoastTS -- just gotta say--I love your picture!
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Thanks for the picture kudos! I foster cats and this guy was spray-painted by a homeless guy (not kidding) -- apparently, the guy spray-paints everything he "owns" gold. It was not a good situation and the kitten was 50/50. It took a bit of rehab and care (he was not walking when brought into the shelter) and was not eating much. Loss of hair, one eye beyond repair.
Well, let me tell you, he is a wild man now. On the edge of fat, into everything, little devil.
Maybe he's like us. We have a hard road but eventually get there. Just a little "altered".
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Cookie, if I had stayed with my original PS I would be angry every minute of every day. I split from him right after the exchange when he tried to talk me into loving my not so good reconstruction and explained how it was my body's fault that it didn't look good.
It took me three more surgeon consultations before I found "the one." She rocked my world by suggesting moving the implants from under to over the pecs and doing the FG. It has made a huge difference to have this all redone, and while it's not perfect, I am no longer angry and sad. If you'd like to see pics, PM me.
Hang in there.
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Iwannacookie,
Is my skin healthy and supple? Hmmmm....well, I guess it's not bad for 61 year old skin, but I seem to recall my PS at one point saying that my skin was thin on the cancer side (due to 2 previously failed lumpectomies). Compared to the skin on my arms or legs, which is crepey or creepy, lol, I think my breast skin looks pretty darn good.
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