living without reconstruction

Hi Lexylulu, I just wanted to say Hi! I can't really help you with this issue, as I am a Uni, but I did have a Dog Ear, which was left after my Umx, which I had removed, about 15 months after my surgery. The difference in appearance, is quite astonishing.

I am wondering if your Surgeon has left you with extra skin? There are a growing number of women posting about how their surgeons have left this extra skin, in case the patient changes her mind and decides to reconstruct later. I am only guessing, that this may be what has happened to you, but if that is it, you can have revision surgery, if you feel you want to do that.

Another suggestion I would make, is to ask if you have looked at pictures of other women who have had Mx surgery? I looked at lots of pictures, before my surgery, just to really familiarize myself with what I would look like. There is breastfree.org, a site run by one of our members here and there is also The Scar Project, which has lots of pictures, very powerful pictures of women, some reconstructed, but many, who have chosen not to reconstruct.

There are many of us, who have decided not to reconstruct, take a look around the Choosing Non Reconstruction threads, also, there is Flat and Fabulous on Face Book. I only mention these sites so you can perhaps see that there are different "New Normal" ways to look, after this life changing surgery.

Please don't think I am minimizing how you are seeing yourself, just letting you know, there are lots of us here and everyone is very happy to answer any questions and to support you, while you find your way.

I wish you all the very best, I am sure some others will be along to share their experiences with you. Take care and let us know how you're getting on.

Hi Lexylulu,  I don't know what your definition of gross is, but my chest isn't the prettiest in the world.  I had a BMX in August 2014 and my surgeon left enough skin and tissue to do reconstruction, which I will not do.  However, I do have an appointment with a PS to see what he can do with the excess skin and tissue.  My prosthetics do not sit flat against my chest and one always seem to wander under my arm, so I would like to have this problem taken care of.  I also have "dog ears" and my arms rub against them as well and feel uncomfortable. 

The choice to reconstruct or not to reconstruct is strictly a personal choice and from what I understand the surgery does not have to be done immediately.  My husband and I have had some long conversations regarding this matter and he stands behind me in my decision to stay flat.  He says I have been through enough and doesn't want me to go through any more surgeries, pain or worry.  He has been my rock, my best friend, my soul mate for 32 years and he tells me that he still loves me with or without boobs. 

At first, I would not leave my house without my foobs, but now, I go flat anywhere I want and really don't care if anybody notices or not.  I have earned these battle scars and am thankful I am still alive.  In fact, I have a pink ribbon window sticker with "survivor" across it and have had several ladies tell me that it reminds them to get a mammogram.  If it helps a sister with early detection and keeps her from going through this wicked journey, it has served its purpose. 

Keep us posted.  We are here to help.  Hugs 

Lexylulul, I am so terribly sorry to hear you are yet another woman, who was not taken seriously by your Surgeon when you made the decision to forgo reconstruction. She "just knew", you'd change your mind, did she? I think not!

Unfortunately, this barbaric practise is happening all too often. We are hearing it more and more here. There has to be something done about it, or there will continue to be a stream of very unhappy women who have been let down by the one person they should be able to trust at this time, when they are at their most vulnerable. I just can't understand the mentality of these Doctors, who actually think they know better than us, about what we want, and decide to live with, for the rest of our lives. How dare they, presume to know what's best for us! I don't even want to think, that it is a financially motivated decision, on their part, but I have no doubt that it is, for some.

I've said this before, on many other threads on this subject, but I truly believe this blatant disregard for the patient's wishes, is bordering on criminal and is definitely cruel and unjust. I just don't know what the answer is, for women going forward. I think a name and shame list somewhere, could help others avoid a Surgeon, who is going to put their own feelings, or bank balance first, on the agenda and decide that we are too weak or addled to make an informed decision about what we want. Just writing this makes me so furious. I just despise that smugness!

I don't know if actually handing a letter to a surgeon informing them of what is expected as the outcome, would help. We all naturally, go in to surgery expecting that we have been listened to and our wishes will be followed to the best of that surgeon's ability. I know I told my surgeon that I would never be reconstructing and that I wanted a straight flat scar. He was there when I woke, joking with me that he'd done what I asked and had even checked it with a spirit level! In saying that, I did have a very straight, flat scar, but I did still have a "Dog Ear", under my arm, which was not intended, but nonetheless, still there. I lived with it for about 15 months, till the zapping and zinging of the cut nerves inside it, made the decision to remove it, for me.I couldn't be happier with that decision or outcome, but then I didn't have Rads to contend with, like you do.

Now, this is just me and may not be something that you're comfortable with, but I'd be writing a very strong worded, personal letter to that surgeon, expressing exactly how I felt about what she did and making her completely aware of how her incompetent decision is something I now, have to live with. I always write letters, whether for a great outcome, or a bad one. I find it cathartic.

I wish you all the very best and hope that with time and healing, you may find your chest does improve, or that you may find there is a way, to revise the radiated skin. ((((((Hugs to you!)))))))

Sorry, Lexylulu, I read your posts as you being angry and unhappy with the way your surgeon disregarded your wishes and simply didn't bother with the final aesthetic result of her surgery. I certainly didn't intend to offend.

I had a very different experience, with my breast surgeon telling me, he and the team were there to do exactly what I wanted, to the best of their ability.

This is a subject that I get very passionate about, because this indifference to patients wishes, seems to be a trend, that is happening with monotonous regularity, along with a growing number of women who are making the decision to deconstruct after they feel they were coerced into reconstruction, which has not turned out as expected or as promised.

I guess it is all about communication

Lexy, I love my surgeon too, but she didn't do what I asked her to do and now I have to spend more time, money and pain to have this fixed, but not this year.  She told me, that she did the hard work and the PS made it look pretty.  I don't understand why there was not a PS at the surgery to finish off what I had asked for in the first place and again, she told me that she thought I would want reconstruction because I am only 54.  When she referred me to a PS, his nurse told me that I had to wait at least 6 weeks after rads before he would even see me so that the swelling would be almost gone.  I see him the end of this month and will keep you posted. 

You may like to try a shape wear firm tank, Spanx make them and the department stores do a budget one. A lot of the unreconstructed girls, both Uni and BMX wear these to give a smoother look under clothing. The Buddha Belly is something none of us were really prepared for! LOL

gavinsgrandma,

Bear in mind that the kind of reconstruction the PS was almost certainly referring to was with implants. There's a very high risk of failure with implants after radiation. However, flap surgeries are still possible and in fact that's one reason some women opt for them. If your PS doesn't do flap surgeries, he may not have addressed the fact that radiation normally isn't a barrier to them. I'd had radiation on one side three years before I had a mastectomy. I consulted a plastic surgeon before my mastectomy just to see what my reconstruction options might be. He said I could have flap surgery if I wanted it. I decided I didn't.

Hi Lexy,

Yes, everything that Ariom said! In fact, today I have my Valetta cami with weighted foam forms in it, a thermal long sleeve undershirt and a fleece! That's just what I'm wearing in the house, ha ha! Down coat outside as well. It's all very comfortable with the pocketed cami. The prosthetics do not roll around in the cami. They are tight in the specially constructed pockets. If you Google Amoena Valetta cami, you will get a number of on-line retailers. Some of the ladies here like to check Ebay too. You have to compare price between the different retailers and if they have free shipping etc... There are other shirts with pockets - long sleeve and tank tops. Have fun shopping!

Best,

Lexylulu, hi! You have hit the jackpot of knowledge! Our Ariom is the goddess of all things foob and cami. She has 'road-tested' most of them, and she will steer you in the right direction!

It is terrible about ins of course, but since it is so pricey, at least you are getting the most comfortable things for yourself! XXX

Hello ladies, thanks for all the kind words, but I am really just a shopaholic, who will do anything to find bargains. LOL I am glad you like the Valletta cami Lexilulu, they are my fave thing, I wear them most of the time I am not sure if you bought yours at metromedicalonline, but they have their full price stock and there is also a sale section that has 2 colors in the camisole for $27.00 each, you generally get offered a 10% discount when you buy there too, so they work out to be a really reasonable price. There are a number of sellers on Ebay who sell the camis too. I have found them at around $20.00 occasionally.

I have an Amoena Contact breast form, in fact I was desperate to get it right after my Umx, but they would not sell to me till I was at least 6 months out from surgery. They are quite a weighty thing to have on a newly operated chest. I do like the Contact, but the extra cleaning and skin prep that they require, make it something that I only wear on special occasions, or with an outfit that has a lower front and I don't want to wear a silicone form in a bra which may fall forward if I bend over. You can wear this form when it is attached to your chest with a non pocketed bra, but you do need to wear a full cover bra. I also find that after a few hours of wear, the Contact does start to peel away from my chest.

For me, there is no such thing as one, perfect form. I have a wardrobe of them, for different situations. My fave is the Tru LIfe 611 weighted foam form, which I gravitate to most of the time It has some weight to it, so it won't ride up and it is soft enough in the "hug test". It is really all a personal thing, some have pain or irritation that means certain items of clothing or forms are uncomfortable, others like Glennie have LE which means they have to wear compression garments. Once you find what suits you and you know your size in the different items, you can shop at the sales and save a huge amount.

I look at it from the perspective of, I had to buy clothing and lingerie before I lost a breast, so now I just have to buy things that suit my situation now. I have found that although the Valletta at full price, is quite expensive, but I am still wearing the first one I bought, 2 1/2 years ago, they wash like a dream and stay looking new for a very long time. I have bought most of the colors available and Amoena make a Tshirt with pockets too. Take a look at the Amoena website, they have a new range of pocketed clothing, swimwear and bras each season. If you see something you like you can find a stockist through the website.

Hi Ariom,

You know the Amoena Valettas at Metromedical that are $27 are only available in sizes 18 and 20! I need a 10. Will they replace them with another good sale soon? I guess I should have bought them months ago! At that time I didn't think I'd need more cami's for the winter but I was wrong! I'm wearing a Valetta every day under my clothing. its holds the prosthetic well and it acts as a little undershirt to help keep me warm. I can't find any at that price. A place on line called the Pink Bra has the exact same availability and prices as Metromedical. I wonder if it's the same place? There are Valettas out there but they cost $52 or $54 dollars at most places where they are not on sale. I'm going to hold out for a sale for a while...I know some gals have great luck on Ebay but I prefer to buy new.

Best,

Yes, thanks Ariom! I guess I have to check around more often. I haven't been focused on that but I will start shopping for some summer things now!

Best,

Awww, Lexilulu, don't cry! It will get better, let us help you.

Your hubby sounds like he is just like mine, but mine has had to put up with a never ending stream of parcels arriving, fortunately I haven't had many mistakes. LOL

The Vallettas will get you through, both Summer and Winter, as a top, or as an underwear top, but there are some other things we have discovered that may suit you too. I am not understanding about the Mx bra you bought, are you able to remember the type and style? It sounds like the size may be wrong for you. Are you able to return it?