No reconstruction
Anybody recently decide against reconstruction? I am 42 and have had 2 lumpectomies w/no clear margins. I will be having a bilateral mastectomy soon, although I only have BC on the left. My surgeon is relunctant to do the bilateral w/o reconstruction but I don't think I can deal with the reconstruction process. Any thoughts? Thanks.
Comments
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mom2one - I decided on no reconstruction initially - thought I would have it later on... didn't get clear margins either... had a wicked time getting through the rads - went to discuss the options with the PS and decided the idea of planting a couple of pounds of tummy fat on my chest - right where I just took off a tumor that was dependent on estrogen. Plus possibly multiple surgeries just to have foobs... it all seemed totally nuts to me. Here I am struggling to get back on my feet after the surgery, chemo and rads and tamox - and now I am going to have them slit open my stomach and move 2 pounds of fat to my chest? Really? I guess if I could have done something less and easier - with a better guarantee that it wouldn't "fail" - I might have gone for it. Are there days I look at my sad chest that used to be the favorite part of me and feel like crying? You bet, but I don't think I would be any happier with big scars all over the front of me... I noticed that even the little scar for the port bugs me... I think I did the best thing I could do for me... I didn't do anything else.
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I am sure you will get many responses here. There are a lot of us who have chosen no reconstruction. I, like starbeauty, could not see subjecting my body to anything more than was necessary to rid myself of the cancer. I think this is a VERY personal decision. Some people are bothered much more than others over the loss of a breast or breasts. I had one removed at 39 and with young kids couldn't imagine undergoing the reconstruction process. The mastectomy was so simple with a very easy recovery and I quickly got on with my life (with DCIS did not need further treatment). Never bothered me that I didn't do reconstruction. I figured if I ever had to deal with cancer again, I would revisit the option then. I guess I felt in the back of my mind that was going to happen because 10 years later I had IDC in the other breast. My top priority was dealing with the cancer and not muddying the waters, so to speak, with any of the issues related to reconstruction. While it may be an extra procedure, I was told by several surgeons (I consulted with plastic surgeons both times, just to be sure that I was considering all my options) that the reconstruction can be done in the future. My personal feeling is that I need to want it badly enough (or conversely, the lack of breasts have to bother me enough) to undergo reconstruction and any possible issues and complications. So far it has not been an issue. Again, I was happy to get on with my life soon after this most recent surgery and pay as few visits to doctors as possible. I figure, even if there is the slightest risk of the cancer returning I don't really want to have wasted my healthy time on "optional" treatments. For me the only issue with no reconstruction is that I have to dress a little more carefully and it may take a few more minutes to do so to deal with the prostheses. But, once I'm dressed I don't think about it again for the rest of the day. Not that I would do it for anyone else, but my husband has never minded and was in fact relieved that I chose not to pursue more surgery.
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This is a subject near and dear to my heart (literally!) I was pretty sure even before dx that I would opt for bilateral mxs. When the first cancer occurred in 2008, I visited the PS but also wanted to keep things simple and uncomplicated. Also didn't like the idea of having anything foreign in my body, under my chest muscles which is where they go. I asked my BS to take both breasts at one time but she talked me out of it. A year later when high grade DCIS showed up in the other breast it was a "no brainer" for me and it was a relief to finally be symmetric. Now that both scars have healed (takes about a year for the color to fade) I am almost happier than when I had breasts and definitely happier than when I had just the one. I can wear a T-shirt and look fine. I mostly don't wear a bra but am still looking and trying different things for those days I want boobs. I have found a good bra now that doesn't bind and doesn't make me sweat to death so all in all, it worked for me. (I am also pretty thin and like the "flat" look most of the time.
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One last though for mom2one: I am surprised that your surgeon is reluctant to do what you want! Although it is not as easy to do reconstruction later, it can be done. The simple mastectomy ought to be easier and he/she should respect your wishes! Good Luck with your decision. I know it isnt' for everyone. Most of my friends have had reconstruction and some of them have some tightness, etc. But I know several who have opted for none, and we are also a satisfied bunch.
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I was 50 at diagnosis, had a right mastectomy only, neo-adjuvant chemo and radiation after surgery. I was not sure what I wanted, but knew that the radiation would complicate implants (which I did not want anyway...no desire to change them out every 7 years...)and healing. I was so blindsided by all of it that I wanted to see how I felt about it after the fact. My husband did not care one way or the other, whatever I wanted was fine with him. I got the prosthetic and it is okay, but heavy (36D) and uncomfortable in the summer, limited what I could wear if I moved or bent in the garden, never found a good swim one... and when I wanted to go without it in the house, pretty lopsided...so I am having the DIEP reconstruction in late May, nearly two years from my surgery.I am not looking forward to the recovery and several stages, but know it is the right thing for me , now. My breast surgeon told me to do my homework regarding the DIEP...and I did...I am having it done by Dr. Marga Massey and Dr. Sullivan in New Orleans. I chose Dr. Massey for her reputation but also for her interest in the lymphatic system, because I have stage one lymphedema and she is doing some groundbreaking stuff in that area. I would make sure that you are fully informed on all of your options, DIEP, implants, nipple and skin sparing etc. Good luck whatever you decide.
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I had BMX (2 separate surgeries, last one 11/10) and no reconsturction. I had had enough surgeries and was worried about the pain and recovery of reconstruction. Needed to get on with my life. I am very satisfied with my decision. I use prostheses and am able to wear any clothes that I want (I look "normal"). It does take a bit longer to get ready in the morning and is somewhat hot in the summer, but have no plans for reconstruction in the future).
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Hi. I had a left mx in July and decided not to do immediate reconstruction. I was so shocked and blitzed by the dx that I knew I wouldn't have time or clarity to do the right kind of research. I haven't regretted that decision as I closed no doors by doing nothing. Now I think about reconstruction but can do it at my own pace. I am still not sure if I'll reconstruct at all; I'm still so happy to be free of procedures. I am happy with my prosthesis (one for regular and one for swimming!) and mostly mind the mx when I am unclothed. My husband is great; the problem is mine. I simply miss my breast and being naked is a stark reminder. But I am not bothered enough (yet) to even make appts to see plastic surgeons. When and if I am, I will. I do like feeling like, at the very least, I am in control of this tiny part of the bc experience.
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My surgery is March 29 and I'm doing a left mx only. Now that I'm reading, I'm wondering if leaving one breast is the best thing. I'm very small, 36a and I figure I can get away with going braless, as I do now. But then I keep looking at myself, trying to imagine a completely flat side and one with an a cup size. Will it matter that much? I plan to get a prosthesis. Is anyone in my situation that has already had the surgery? After I met with the PS I immediately decided no recon. A blob of silicone under my chest muscle scared the heck out of me. And he wanted to put another one in the other boob to balance. He was going to make me bigger than I am. And the skin stretching...yikes. Yes, I just want to move on with my life, hopefully no more surgery, ever.
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I am having a BMX on March 18 and I am not having any reconstruction, I think if I had been having only one removed I may have gone for reconstruction as I dont think I would like to be flat on just one side. I will have the option to be flat or to wear prosphesis if I want and I like that I will always have the choice. I am looking forward to the summer when I wont end up with bad sweat rash under both my DD boobs. I have asked my surgeon to make my chest as smooth as she can get it..
Kezzie
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rianne2580- I had a left mx only as well. I was a 36B, but after a lumpectomy on the right side I ended up 36A. I wouldn't go braless now, but then again most of my tops are quite form fitting. I agree completely about having a silicone implant. Yuck. (No offense to those that have had it done....). I wouldn't know how it is to have both removed, but I am kind of glad that I have one left. It helps me to feel feminine. But I would have it off in a second if there was a medical reason to. It is a pain to always need to wear a bra and foob, but I have figured out a system and I feel that I look quite nice so I've gotten used to it. When I really can't be bothered or it is just too hot for a sicilone foob I just pin the fiber foam form that I got at the hospital on the inside of a camisole and it is almost like going braless.
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Thank all of you so much for your input. I see the PS on Wednesday but am really leaning towards no recon. My husband doesn't care and we are both ready to just move on with everything else. I am HER+ with a DCIS/microinvasion stage 1 diagnosis. I know I want them both gone. I was told they see a small something on the rt side as well, but they are certain it is not cancer. Yea, right. I don't trust that. I want them both gone. I am thinking of having the PS close after the BMX to minimize scarring. I will ask about that on Wednesday. Are the foobs for swimming different than the daily wear? What has worked for everyone? Again thank everyone so much this site has made a huge difference to me. Thanks for giving me strength.
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Because I had IBC (inflammatory breast cancer) reconstruction wasn't an option at the time of my surgery. I had chemo, surgery, then radiation. I chose the bi-lateral because of the high rate of reoccurance to the other side. The girls were not small & I didn't want one big girl & no girl. So the bilateral was a no brainer for me. It turned out to be a wise decision as I had precancer cells on the 8m 6other side. I don't mind being flat & most people don't notice it at all. I just dress a little differently. I am very happy with no reconstruction. NJ
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I was 43 at diagnosis and had a single mastectomy. After living with one breast for a year and exploring reconstruction possibilities I decided against it and had the other breast removed to balance me up. I have now been totally breast free for a year and I am very happy.
I have got some adhesive breasts which are little miracles and work extremely well under certain clothes but most of the time I don't wear anything. I hate wearing foobies in mastectomy bras because I always feel like a drag queen when I put them on. Anyway my confidence in my new body has grown over past months and I don't even think about my booblessness anymore.
My body has been through enough with all of this treatment. It doesn't need to deal with foreign bodies being sewn into it and muscles being relocated and all that. It needs time to heal and to stay well. If your surgeon won't do the surgery without recon get another surgeon. It is outrageous that women should feel that reconstruction is the "norm" and anything else is odd.
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I had a mastectomy 3 years ago, and ended up with a lot of muscle and nerve damage (mostly from the chemo & radiation). My Favorite foob is - a Swim form. I don't wear it much - this is the new normal . The swim form - is comfortable, and seems to be weighted to not put pressure on the damaged areas (no wonder a lot of folks end up with lymphoma.) Interestingly enough - it is the right shape to put in a "Barely There" bra - so since I'm small, I don't have to deal with the mastectomy bras cutting into the tender areas either. I'm so glad that I didn't have reconstruction - I can't imagine dealing with any more residual damage . Best of Luck !
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rianne...I am very similar to you...a 34 A cup and had a right mastectomy in the fall. I chose not to reconstruct and am happy with my decision. I was fitted for a prosthesis in January (amoena natura light) and it looks great...I could wear a bikini and no one would know. It's light and my fitter at Nordstroms outfitted me with the prettiest bras I've ever had! And, sometimes I go braless and just wear a loose sweater or wear a scarf that falls strategically over the breast area...that works too! Good luck with your surgery.
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I also opted out of recon. I was 40 when diagnosed and after chemo, rads, etc. I just could not see going through any more crap. I have not regretted it at all. I had a single mast. So many people thought I would change my mind. It has been 5 yrs. and so far I haven't. You should go to breastfree.org if you have not already been. My story along with others is there.
I did explore options prior to my mast. but none seemed right for me.
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I would look at having PS close to cut the chance to "dog ears" Tell PS how flat you want to be.
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I had my bmx Dec 16th, I didnt have a choice on one but did on the other, so far so good. I am healing nicely. I mostly go without except on special occasions. I know I will never have reconstrution, I have been thur 3 surgeries in 6 weeks and that is enough for me.Everyone must make their own choice for themselfs. It was a very easy choice for me.
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Just wondering nwest125 - were your breasts a big part of your sex life? I had a MX 12/09 and although I truly hate having an "uneven" feel - and I worry BC will come back in the other breast - I feel like I "need" the remaining breast for my DH. He says no... but I see what I see. How did you cope with the loss of both?
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I agree that the choice is very individual. What I can say for myself is that I did try going with just one breast for a year after my first mx and although it was easy to wear a form that matched my breast in a bra, I HATED being lopsided in my PJs or when naked! I used to go without a bra when I had 2 breasts but something about that little asymmetry bothered me. So I was really glad (well, it was one good thing about getting cancer again...) when a year later I got BC in the other breast and could get rid of it. Now I can wear T-shirts and whatever without anything and I think I look almost younger since there aren't any saggy breasts. Personally, I feel better naked as well. My BS made the scars very straight across and now they have faded so much that it is like being a kid again. I even feel odd sometimes with foobs although have finally found a couple of bras that are great (thanks to breastcancer.org!!)
Good luck with your decision mom2one. Oh and one more benefit - again in my eyes - it is GREAT to never have to worry about or have a mammogram ever AGAIN!
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sure when I was younger they were but at age 58 and been with my husband 35 years its ok. he would rather have me here and alive and not have to worry about getting BC in the other side later. I had 2 cancers in the same breast so I never want to worry anymore.
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Hi Mom2One
I had a BMX last summer. Sometimes I wish I would have kept the one that had ADH so DH would at least have one for himself. But that was just a precancer waiting to hatch.... It bothers me more for him, them being gone and what he miss's. And what we miss together as a couple. And these were things I could not forsee b/f the surgery.If boobs are a big part of your sex life you will have to fall in love all over again in a new way. I miss them bouncing !
Take pictures.... you will never see them or your nipples ever.
It is a big journey for me into grief.... what I have loss/ what DH has lost/ what we have lost together.
I wanted no part of implants/ DIEPs as for right now if it ITS NOT REAL.... i cant go there. I have a hard time with the Foobs and want to toss them out the window after an hour or so.... so I am flat flat flat most of my days.
LOLOL! About the Drag Queen thot..... I have thot that some may think I am pulling a Chaz Bono......
I am having alot of trouble with clothes as i was a DD and nothing fits and I am a t shirt / jeans chick.
My BS did leave extra skin, and I have dog ears ( extra skin under my armpits that don't match) just in case I do change my mind. It is harder if you go smooth and may limit recon if you ever go there. Excellent idea to have PS close if you are 100% sure.
This was the right decision for me. But I have no idea that I might change my mind years from now,,,,
Hope this helps. And best of everything !
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Everyone's stories have been so helpful and so inspiring to me. I see the PS tomorrow and will try to get as much info as possible. I have been writing down a lot of questions. Jamair just answered one. I wanted to know if I went all the way smooth could I change my mind later. I am thinking I won't but I guess you don't know until you are there. My DH said he just wants me to be healthy and doesn't care about recon. He wants me to feel good again. I know I am tired of hurting. 2 lumpectomies (1 on the 2nd and 1 on 14th of this month have left me sore. They also think I have a pulled muscle in the rib area from the aggressive nature of the second surgery. That is why I am leaning towards no recon. I just don't want to go through all the extra steps. I am currently a B and on the petite side. I wish I could keep my real ones but I tried that and it didn't work. My life is worth more to me than my breasts so I think mentally I am ready to flat but I am sure there are days that will be more sad than others. Thank you all again for the invaluable information and strength.
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Hi mom2one,
Just a note regarding Jamair's comment about leaving extra skin (i.e. having a skin-sparing mastectomy) -- while it's true that if you decide within about six months of your mastectomy that you want reconstruction after all, having extra skin would be helpful, you would still have plenty of recon options even with a smooth, flat chest and no extra skin. As I understand it, after around six months the extra skin isn't really helpful anyway. Virtually any type of delayed reconstruction is possible even after not having a skin-sparing mastectomy.
Personally, I felt I would be depressed with extra skin hanging on my chest, so I asked my surgeon to give me the best cosmetic result possible. I wound up with a smooth, flat chest and symmetrical horizontal scars (barely visible after four years). I still have no interest in reconstruction, but I've been assured by my doctors that if I ever change my mind, it's still an option.
When you see your PS tomorrow, you might ask him or her about this.
Barbara
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What Erica says is right. I wasn't going to have reconstruction & my BS took all the skin & made me smooth. It was kind of nice feeling, I liked putting on a tshirt, loved the feeling on my chest. I felt like a 12 yo girl again!
But I changed my mind later & had reconstruction & had no problems. -
Everyone
Just to clarify my post I was not referring to a skin sparing mastectomy... just a simple/ total mastectomy.
In my research and in many of the recon boards here at BCO, women do sometimes run into problems with recon esp with tissues expanders rupturing thin skined surface areas used for breast implants.
best to all
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Hi Jamair,
That makes sense. While some women do go ahead (successfully) with implant recon after having all extra skin removed, I have heard that there can be difficulties with stretching skin for implant placement, especially if you've had radiation. With flap recon, if there's not a lot of skin on the chest available for recon, skin can be moved from the donor site.
I did consult a PS before my surgery, but since my mastectomy the only kind of delayed recon that I've looked into is the new technique of using autologous (your own) fat to form the new "breast" (see the thread, "Has anyone had micro-fat grafting?"). I visited Dr. Khouri, who pioneered the technique and he saw no problem with stretching my very smooth, flat skin. (Nevertheless, though I believe this technique may be the wave of the future, I decided it wasn't for me. Even though it's billed as non-surgical reconstruction, the liposuction necessary to provide the fat would require general anesthesia and once the new breasts were formed, I'd need mammos again--ugh! Plus, fat can form oily cysts and other anomolies that I knew would freak me out and remove the peace of mind I've had since my BMX. Also, I've come to enjoy being able to wear different size breast forms, depending on my mood, yet go flat at home. Go figure!)
Barbara
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Just saw PS and now I am more confused than ever. I went in thinking I didn't want recon but now I am starting to wonder. The PS was very nice and not pushy at all but he did mention some women have problems with pain from the chest muscle sticking to the skin w/o recon. Did anybody have this problem? He also mentioned he had a woman do the TEs but he never filled her up one time because the TEs gave her the size she wanted (she was small to begin with). He then put in small implants once her chemo was over.
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mom2one,
I run a non-profit website to inform women about the option of not reconstructing (BreastFree.org). I get a lot of feedback from visitors to my website and I have never had a report of pain due to the chest muscle sticking to the skin. If a woman does develop adhesions (scar tissue that causes the skin to adhere to the underlying muscle), a physical therapist can release those even years after surgery. I had a few adhesions (on the side where I'd previously had a lumpectomy and radiation). They weren't painful at all, but caused some tightness when stretching. My physical therapist (who specializes in working with breast cancer patients) was able to easily release them.
Implant reconstruction is generally more likely to cause painful complications, given the extra surgery, risk of infection, stretching of skin and muscle, strain on ribs, etc.
Whether or not to reconstruct really is a personal choice. You've had a lot of great feedback on this thread, but only you can decide what's right for you.
Unfortunately, it's impossible to predict who will have problems with implant reconstruction and who won't. Some women hate the feel of their implants and later opt to have them removed. Some have discomfort and live with it. Many others have no problems and are glad they chose that option.
On the other hand, some women who don't reconstruct never adjust to prostheses, miss their cleavage, and don't feel "whole" without reconstruction, while others (like me) feel whole and comfortable (and even attractive!).
I wish you the best of luck whatever you choose. Please keep us posted.
Barbara
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Mom2one, ???chest muscle sticking - I've never heard that from anyone. It would seem that could happen even with an implant since the implant goes under the chest muscle. One thing I forgot to mention that I didn't know before talking to the PS is that they often have to use a graft from a cadaver to help hold a new implant up, whereas if you have delayed reconstruction the scar tissue actually serves this purpose. I was hesitant to have the plastic/silicone/whatever-it-is in my body but even more uneasy about having someone else's tissue. Just something to ask about...
I totally agree with Erica; it has to feel right to you - go with your gut.
P.
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