Looking for your long term issues w bmx without recon
Comments
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"Going flat/using protheses is tremendously limiting socially, psychologically and (don't laugh) sartorially."
Really?
I haven't found that to be the case for me at all.
Never had a problem socially or romantically with being flat, I've been happy since my BMX (a lot happier than I was with painful, cyst filled breasts!), and wear the same clothes I did when I had a set of DD breasts without any issues or problems with how they fit.
Please keep in mind that your experience isn't everyone's experience, and just because you had psychological trouble with going flat (or the idea of being flat) or weren't happy going flat/using a prosthesis doesn't mean that that's everyone's experience.
For me, reconstruction would have been the wrong choice and I wouldn't have been happy with the results or with going through the extra long or extra surgeries to get them and I also didn't like the idea of implants. And, in the end, having breasts just wasn't that important to me as they were never a large part of my identity or self esteem/self image; that doesn't mean reconstruction is the wrong choice for everyone, for some women it's absolutely the right choice.
It means it was wrong for me, so I didn't do it.
If it's the right choice for someone else, that's great, and I wish them luck and no complications but what they don't need to do is come into a thread for people who chose not to reconstruct to tell them why their choice was 'wrong' somehow because it's not a choice that worked for you.
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I had bilateral mastectomies 8 years ago (at age 45) for Stage 1 breast cancer. I have a CHEK2 mutation and an extensive family history of breast cancer. I had to have radiation due to the proximity of the tumor to the chest wall. I chose to skip reconstruction and have been very happy with that decision. Bathing suits are a little challenging, but other than that I'm fine. I wear double normal bra inserts in sports bras and A-size prosthetics in regular bras. I use the silicon swim prosthetics which are lighter weight and hollowed out so they aren't as hot. I miss having breasts for the sensation, but implants wouldn't change that. Implants can have more complications after radiation which was a major factor in my decision. My husband has been very supportive of my decision. I'm flat chested, but don't have any concave areas or skin flaps. My recovery from bilateral mastectomies was surprisingly quick and relatively pain-free. I originally had a lumpectomy and the sentinel node biopsy was much more painful than the bilateral mastectomies.
My friends who have implant reconstruction are also happy with their choice.
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Hi Nkb I haven't been on for a while. I didn't realise you'd had so many nodes removed. I had 29 removed from the right side and just the sentinel on the left and I'll admit that, even after eleven months, I'm still uncomfortable because of the dog's ears, strangely enough worse on the left than the right but it was the right side that had the massive tumour and the left one was only 2cm. I'm interested in the soft bra you mention. Are the inserts heavy?
I wear a prosthesis bra occasionally but not as often as I did when I first got it as it's really heavy and it bites into the swollen areas of skin under my arms. In Australia we're allowed a new prosthesis every two years if we have private insurance, which I have, and I tried to match the size of the prosthesis with my original size. It does look nice under clothes as long as the neck is high enough to cover it but I'm finding that going flat is so much more comfortable.
I never considered a recon, not for a moment, as I was too ill at the time of operation and I still am too ill to have an operation for the sake of vanity or so that clothes fit better....besides which, I intend to have my ovaries and uterus removed as soon as I'm the slightest bit well enough to manage another operation and anaesthetic.
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Leapfrog- for a long time the only mastectomy bra that was comfortable due to the scars etc was the amoena Mona SB. It is not low cut- so I had to add some snaps to some of my shirts. I put size 4 inserts which is equivalent to 34B I think. The inserts are amoena also- my second set of inserts is much more lightweight and cooler than the first ones- the "bra lady" told me if they are too lightweight they just start hiking up under your clothes. I don't mind the weight or warmth because they are rather small and I am often cold. But, a lot of folks do notice the warmth of the silicone. Check out the amoena site- you can order them yourself also. Now that I am further out from surgery there are more bras that are comfortable and my current favorite is the Lara (no underwire). Some of it has to do with your build- smaller frames or other issue so if you had a place that you could try them on that would be nice. On the other hand- I have bought them on line and just returned them if they didn't fit. There are lots of other brands as well.
There used to be someone who posted a bunch of info about this on BCO- don't know if she is still around.
I heard that some people use bird seed- the "bra lady" told me no- not a good idea. the movie "Birds" came to mind.
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I may not be qualified to post on this thread because I had reconstruction. The recovery was very painful for me as I had both sides with sentinel nodes removed AND TE inserted. If You choose to go flat then I would still insist on a plastic surgeon to go in and smoothe everything out and make it look good. There are big downsides to reconstruction. I have a very difficult time with my wrists and hands from the way they restructered my pectoral muscle to shove an implant underneath it. I actually know many women who chose to go flat. Some of them get a tatoo. In hindsight I think I would have liked that route as well. The best part of a DBL mastectomy ( especially without reconstruction) is you will enjoy exercise way more especially jogging as no bounce and no underboob sweat.
My implants are too small to really give any height in the top of my bras and they just squish down. They call this the "upper pole" area of the breast. I wear hollowed out prosthesics and I actually flip them so that I have more height upstairs. In any case I had a lot of pain under my arm pits and sought out a local mastectomy shop for advice. They sell mastectomy bras that have quite a wide nice soft band that goes under the armpit. This helps with dog ears but also gives more support so things are not as painful. Getting fitted is important because we all know how crappy it feels to have an ill fitting bra. Also I am looking into the microbead inserts. I wish there was a better thread that just talked about bras and prosthetics etc.
I chose this route because people have a tendency to stare at my chest to try to figure out how good my reconstruction was. It annoys me so I just don't give them anything to talk about. At the end of the day its there own dang hangup and I shouldn't feel I have to live my life in a self conscious way.
For anyone else reading this I also wanted to say that for edema and mastectomy recovery I wish I had done water therapy. I had Chemo and they didn't want me in the pool at my gym. I wish they would have given me a prescription to go to the therapy pool. In any case once I was done with treatment I pursued this kind of therapy ( basically walking in the water and going neck high to move the arms off and on) It made a tremendous difference. I mean really life changing so I would very much recommend that to anyone with issues after a mastectomy or just for gentle exercise.
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Exercise, I think your post is really helpful.
we have a lot of women who initially chose reconstruction choose to remove the implants and go flat - a lot of their issues disappear.
I had TEs initially and the pain I felt from my muscles was enough for me to say enough was enough. Therapy is very important no matter what you choose. I had Therapy about 3 weeks post surgery and that really helped my adhesions and tight muscles (that were still recovering from the TE mess).
On Flat and Fabulous, we see results from surgeons and I can say some women who had PS's had horrible outcomes and some women with just breast surgeons had amazing results. I personally had a Plastic guy do the initial removal of the TEs and 'make me flat' and the dude left skin (just in case I changed my mind!) ugh. I had to have a revision surgery this spring to get truly flat. I wish I had let my breast surgeon do the work, but I didn't realize I wanted to be flat until after I chose recon.
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exersise guru, thank you for your input..
I am small framed and chose bmx with no recon.. im finishing up my radiation this week. I did get the plastic surgeon to do the stitch up after my mastectomy as I wanted a decent scar.. and my breast surgeon was more than happy to allow her to do the closing as he said she would do a better job..and she did
I do have a little poof under my arms as I had alot of nodes removed but its not bad
As for bras.. the most comfy for me are the cooby bras
They have a wider band underneath that keeps from riding up and a wide side to help with any dog ears .. I use very lightwieght inserts . I did get some micro beads to experiment with but havent tried yet
With radiation im finding them most comfy and just started using theircamisole which is even more comfortable with radiation burn
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Nkb thanks for that. I am very small framed and have bone mets (not sure how many times I've mentioned this...probably lots! Blame it on Tramadol haha) so the heavier prosthesis is a lot for me to carry around. Someone on a Facebook page mentioned Knitted Knockers so I'm going to give those a try. I think my prosthetic bra would keep them in place as it's firm around my diaphragm. I'll look at the Amoena site. I have bought some things from there before as I have to buy everything online. I can't go out shopping at the moment because of Grade 4 Neutropenia and terribly painful bone mets. I'll hop onto the site now and have a look.
Mamaoz thanks for your input, too. I was told about Coobie bras on Facebook as well and I'm looking into that. I think it will be a lot more comfortable than my current prosthesis bra.
Hugs
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leapfrog hope you find something that works for you!🌺
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Leapfrog- if my mother was still alive she would so have loved to knit me a wardrobe of knitted knockers! Let us know what you think of them. I like the natural feel of the silicone when I hug people- I would love to flash a beautiful knitted knoocker- but, I didn't get those genes from my mom
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Nkb this is a link for Knitted Knockers in case you want some to flash! They come in all sorts of colours..... I'm a hopeless knitter too but my mother would also have soon supplied me with a pair for each day of the week if I'd wanted her to.
https://www.knittedknockers.org/request-a-knocker/
I was amazed to find that they're free and are knitted by a dedicated bunch of knitters just for people like us.
I know what you mean about the naturalness of the silicone prostheses but I just can't seem to get used to the way they feel like a garment I'm wearing rather than a part of me and the slippery sort of feel to them but that's just me. I'm perfectly fine now about not having my own breasts and I love the look of the silicone prostheses, it's just a mind thing that I have to deal with.
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Leapfrog- I didn't get the flashing gene either!
Yes, our local knitting store will make them for you or help you make your own. Knitting has become popular again here- how about Perth?
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Haha Nkb I also missed out on the flashing gene! Oh well, I guess we're good at something hahaha.
I don't know whether knitting has become big in Perth or not, to be honest, but I've decided that as I can't do a lot else while I'm waiting for the tumours in my bones to regress and let me do more physically I might as well try to improve my craft skills, knitting amongst them. When I say skills, I'm using the term very loosely!!! Currently I'm knitting myself a neck warmer and it seems to be going quite well. The last time I tried to knit a scarf it took five years and a friend finished it for me but I'm halfway through this project and have high expectations! It must look quite good because my son has asked me to knit him one for next winter.....it will take me until then to finish mine and his, I imagine as we're in Spring here now so I have until next May to work on them.
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Hi Leapfrog,
I don't know if you've ever come across my non-profit website, BreastFree.org. On it, I make suggestions for both silicone and non-silicone breast forms, which you might find helpful, and I also offer ideas for bras and camisoles that can work well with breast forms (including the Coobie and Genie bras, but a number of others as well).
For non-silicone breast forms, I personally like the Trulife Tri-Leisure and Tri-Featherweight forms. The Tri-Leisure forms have a weighted core that gives them a little bit of heft, so they don't ride up in bras. I like to wear the unweighted Tri-Featherweight forms in a Still You camisole. Both these forms have a very natural shape but don't cause me to perspire like the silicone forms often do. Amoena also makes a nice non-silicone slightly weighted breast form, the Weighted Leisure Form, Style 132.
I know a lot of women like knitted forms, like the Knitted Knockers. For me, though, I feel that they look too lumpy, even when inside a bra, and I am aiming for a smoother appearance.
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Erica ! so glad to hear from you! Hope your well
Your advice was always so helpful!
I have just completed my radiation!! Now on to the arimidex and hopefully a healthier productive future
Mamaoz
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It is tricky with the mastectomy bras. I actually found a lined bra and then cut a pouch out and stuffed it. This allowed me to have the smooth front but also a pocket to hold things in place. I am sure j could squash a knitted nocker in there. Sure i could have gotten a batting one in and smoothed it to shape. I will try it to see. I haven't found that the mastectomy bras have that nice lining. They figure whatever insert you put in will be perfectly shaped and smooth but that is not the case if you are not using a traditional silicone prosthetic. The ones with microbeads have a shaped nipple that I would prefer not to show through the bra. I ask my mastectomy shop and they didn't have suggestions for a lined mastectomy bra. Also the silicone prothetics are hot beasts in the summer yuk.
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exercise- did you look at the amoena "Lara" without the underwire?
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Erica, thanks so much. I'll definitely look into your website today.
Mamaoz .......congratulations!! You must feel so relieved to have that out of the way.
Thanks to everyone for your suggestions. I'm still researching but I think Erica, your website might be exactly what I'm looking for. Thanks again.
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Hi MamaOz,
Glad you're doing well and done with radiation. I hope the Arimidex is easy for you and you enjoy living breast-free.
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Erica Its weird , but Im shocked Im ok with the breast free thing .. im sure it will be even better after the burns fade
They do fade right?? Still looking at the arimidex bottle I know I need to get started
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They will definitely fade! And hopefully, they will completely disappear. Mine did.
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Some people's disappear, others don't. My mother has darkening (but no burns) 8 years after radiation. I'm 2 years out and it's faded but I don't think it will ever go away entirely.
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thanks gals
Well if it doesnt clear oh well ...not like I wear a bikini i at 63 lol
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Erica thanks so much. I spent a lot of time on your website on the weekend and selected Still You Illusions as the breast forms I thought I'd like best, as well as the tank top but, unfortunately they don't ship to Australia. I couldn't find a single website that will ship them to Australia and I can't find anything like them here, even on the Amoena website. Sooo disappointed! Back to the drawing board with the suggestions in your post.
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Leapfrog, if you are open, I can buy them and ship them to you. PM me.
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Thanks so much Lisey. I've PM'd you x
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Wow, Leapfrog, sorry you encountered a shipping problem and so nice of Lisey to help you out. After going through all that, I really hope you like the Still You Illusion forms and camisole. I love the camisole and like the forms as well, though I've found the Trulife foam forms work even better for me in the Still You camisole. That's the problem with figuring this out -- it can take a bit of trial and error, and each of us is different. But you can't know what will work for you until you try it yourself. Fortunately, the non-silicone forms are a lot less expensive than silicone. I hope the Still You Illusions are perfect for you.
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Erica, thanks. It is very kind of Lisey and we've been in communication. She's offered to help me any time in the future, for which I'm very grateful. Such kindness! But, as it happens, my husband and son will be in Washington on business in November for a week and I've contacted the Still You website and the Trulife website. So far the Still You one has got back to me and told me they can definitely work with me and will ship my order to the hotel in Washington. As that worked out so well, I contacted the Trulife website to ask if they can do the same. I haven't heard back yet but that would be because of the time difference. This way I can have both the Illusion forms and the Trulife Featherlight forms as well as the Still You tank tops. I'm happy!! We decided that, as my husband and son will be there, I might as well stock up on the items you've mentioned that I think will work for me. Thanks so much for your help.
I'm finding American websites are very efficient, at least the ones I've been in contact with are, and there's a huge variety for you over there, unlike in Aussie.
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Just checking in to maybe be of help to somebody. My surgery was over two years ago. Cancer was in the right breast, but I opted for double mastectomy w/o reconstruction so I could be symmetrically flat. I have never regretted it. I wear the same bras as before and just stick a "cutlet" thingy from Target in there. The only inconvenience is that some tops from before fit weirdly afterwards. I just gave those to charity and now wear what feels and looks good. I still feel as attractive as before. The only people who have seen my scars are my husband and my daughter, and they don't care. To be honest, if a man on the street glances at my boobular region it makes me smile because he has NO IDEA what he is actually looking at. (I do not mean to imply that everyone should do what I did and be okay with it. This is a very personal issue.)
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Hi Leidy, just wanted to thank you for sharing your solution. It sounds good and I have kept some of my old bras as I couldn't quite get to the point of throwing them away, even though I've pruned my wardrobe quite a lot but they're underwire bras and would hurt I think but I'm going to give it a try when I get my new, lighter prostheses. Either that or buy some without underwire that are similar. I find I need a bit more than a cutlet thingy to give me enough shape if I want to have shape. I go around flat at home and to my oncology appointments and, as I can't go out very much, I only wear it if I'm having visitors and want to look a bit dressed up for morale purposes. I'm small and not exactly at the age where men are looking me up and down any more hahaha.....as if I care anyway now. I'm just happy to be alive. I used to like wearing those clingy tops with long sleeves and a tunic but they don't fit around the neck area without something to give me shape and I love my tunics. That's just how I look at it but, like you, I respect that we all feel differently about this. Once summer comes to Australia I have a number of tops that are gathered from a yoke or have pin tucks and they look fine without prostheses despite sitting flat.
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