Finding the Right "Alternative"
I am struggling with finding a solution. For one thing I find the whole process a little intimidating and confess my already life long wobbly self esteem took a major hit with the loss of my right breast (kept the left one so I have an "anchor"). That's just me and I'm owning up to it. I have also worked too hard all these years to maintain a very respectable figure to start hiding behind baggy shirts at this point.
My issues are complicated as this is my second cancer, same side. 9 years ago I had a lumpectomy, full axillary node dissection, chemo and radiation. While I've never had any lymphedema issues in my arm - I've had on and off issues in my trunk area. I eventually found a style of bra that was very comfortable; soft, cottony, not binding and not a lot of support. I'm small busted so I don't require a lot of support. This bra will NOT work with a prosthesis - plus it was discontinued a few years ago and what I have is in very sorry shape.
So now I have my first prosthesis and mastectomy bra. UGH. I've had it for 6 weeks and cannot tolerate wearing it for very long without getting quite uncomfortable. As soon as I get home - off it comes. My chest area just aches (I've done PT and will just have issues for a while due to the previous radiation - rads messed with my chest muscles and the mastectomy surgery played havoc with that for sure). It's an Ameona form, supposedly lightweight. The fitting process was a joke, but for the first go I tried to capitalize on insurance use. While technically I'm probably in the proper bra size for a normal person - my trunk CANNOT handle the tightness of the bra band, or maybe the weight of the prosthesis. Or the combination?
I'm currently NOT feeling good about this - I will not do reconstruction and fully expected to just use a fake set up. I'm absolutely good with that concept. But I NEED to find a set up that will work. I'm heading to a specialty shop tomorrow to see if I can find a better "system". Can anyone give me suggestions for "products" to look for? Really lightweight forms? Bras that don't strangle?
Comments
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How big are da boobies? Small busted...Have you tried the tank tops.
If your boobies aren't big, I think it is possible to go with a foam prosthetic. Much lighter. Much cooler.
tl
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P.S. Honestly, if your boobies aren't very large, I don't know why you couldn't keep the bras you have and pin in a lightweight foam prosthetic and keep rocking.
I have just gone to the sewing store and bought foam enhancers. Whipstitched them together to make a round prosthetic, tucked (pinned) and rolled. (Total cost = $6 plus tax.)
tl
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Have you looked at the Breast Forms and Bras and Camisoles sections of my non-profit website, BreastFree.org? I recommend forms and bras that I and other women have found most comfortable.
I had a bilateral mastectomy, so some of my issues are different, but I can identify with some of the problems you mentioned. I previously had radiation on one side and that side is tighter and more sensitive to pressure. The band size which fitters recommend often feels too tight for me, especially over a few hours time. I've started to go with what feels good and I've found the forms still stay in place.
There are some silicone forms you can wear comfortably in a regular unpocketed bra, since they have microfiber backing. Silique makes one such form and it's the lightest silicone form around, called the Comfort Lite. They are also being marketed under the Airway label, but at a much higher price. This form is ultra light, but I think it would have enough weight to keep both your sides in balance, especially since you're small-busted, so your natural breast isn't very heavy. I have a pair and I love them.
I've found that the bra I wear can be even more important than the form. So perhaps if you can find a better bra, the lightweight Amoena form you have will work better. You didn't mention which form you got. In addition to the Silique forms, I have the Amoena Climate form, because I really hate the feeling of sweating behind my form and the Climate form is very good at preventing that. The Amoena Comfort Plus forms (in the Natura line) are also supposed to prevent perspiration. However, you may not have that issue--I find that my radiated side hardly perspires at all; it's the non-radiated side that has that problem (one of the few advantages of radiation!).
Good luck with this. Let us know what you figure out.
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The form I have is the Ameona Individual. On my good days I'm a 34 barely B. While I could tolerate the 34 band size before the mastectomy - I most certainly can't now. That's gotta change. I spent yesterday experimenting with my old favorite bra and the form I have, and it was "okay". Unfortunately my old favorite bras are just about DOA with no hope of replacement. The hunt is on for the new perfect undergarment. Sigh.
I would still like to find another kind of form as well - something for workout attire. The Ameona form doesn't work with a sports bra as it doesn't "smoosh" the same as my real breast. How do the sports inclined deal with those times when a more balanced look is preferred?
It's challenging. I have the occasional internal dialogue about the pros and cons of removing the other breast for balance - yet emotionally I know I'm not up to doing that yet.
Thanks for the help. The web site is truly a wonderful resource.
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marmsie, thanks for posting your question. I am sorry you are dealing with this, but I hope you get some great advice because I am dealing with exactly the same thing.
I've found myself bouncing back and forth between this "No Recon" forum and the "Lymphedema" forum, but fitting into neither one. I, too, have chest wall swelling on my mast/SNB side. That side is still kind of "delicate" and a sharp strap buckle or a row of front hooks is intolerable. I cannot wear the bulky, obscenely expensive mast bras I was sold last year. The fitter insisted that I needed a 34 band size, which is what I used to wear pre-BC dx. (I'm a 34A/B---"nearly B"---in my previous life.) She said the band had to be tight in order to hold the silicone foob in place. My foob was also $$$. It is lightweight and soft etc., but it just flops around in the cups of those mast bras. I haven't taken the time to sew pockets in my regular bras, to see if that would work. Long story... I'll quit whining now.
Anyway, I, too, searched far and wide for a comfortable bra and finally found one that is soft, stretchy cotton. It doesn't provide much support, but I hate thick bra cups and didn't need much support. On a long day, it, too, will leave a band mark; but I remedy that by slipping a lateral "Swell Spot" underneath the mast side. It was a "Bestform" bra that was only $9.00 at KMart. So, guess what? It's been discontinued. I quickly bought all of them I could find and ordered 6 of them through an on-line place, and they were able to cobble together the shipment. I think I have 8; I hope they last awhile.
No one seems to understand our predicament. The mast bra fitter was horrified when I told her about the chest-wall swelling. She scolded me because I was no longer seeing an LE therapist and said I should be taking a diuretic. (She really said that.) My LE therapist (yes I have one) said I should try a Bellisse compression bra. Looks like a suit of armor, actually; I skipped it. My onco and BS keep telling me, "Just wear a sports bra." After trying on 42,580 different sports bras, I'm not too optimistic that will do the trick either. I did find a cute one in bright purple, but I can't wear it under anything other than black sweaters.
<sigh>
Maybe I just needed a chance to complain a little. I've been trying to be good, but sometimes you just gotta let it out.
otter
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Hi Marmsie --
I'm somewhat in the same boat as you: lumpectomy and rads, followed by mastectomy; soem truncal swelling; huge emptional rxn to the mastectomy but not willing to go for reconstruction. And maybe i can give a little (!!) help on the chest wall problem.
I had swelling on the lateral chest wall after lumpectomy and rads -- went to an LE therapist, did the massage, got a compression bra -- the works. I was petrified of LE! The swelling never got bad, never went away - neither the massage nor either of 2 compression garments seemed to help, but my favorite underwire bras dod aggravate it. So i didn't wear them, but other bras don't feel right to me -- i'm 34D, and i feel baggy without good support.
After 8 months of this i finally got to a specialist in LE (not easy!) who said there's so little info on truncal LE, he couldn't even say if i had it, nor run tests to decide, because there are no baselines ... *but* he also said that since it had stayed mild for 6 months plus, i should do whatever made me comfortable (goodbye compression bra!!) because the chances of serious lymphedema for someone like me (1 node out plus rads; normal weight; no deterioration for 6+ months) were very low.
So i went home, hugely relieved and walking on air --- and a week later learned that i had widespread ADH in the irradiated breast.... nothing new: change of technology. In the end it was up to me to decide if i wanted to lose a major chunk of what was left of that breast to another biopsy, or go straight for a mastectomy. I chose the mastectomy, even tho i knew it would mess up my mind something fierce. And decided against recon because ... more surgery? More numb areas? A breast with no feeling?
I was lucky: i have a wonderful psychotherapist who stuck with me thru the depression. AND my post-mastectomy physical therapist is trained in myofascial release -- deep tissue massage. She worked on the mastectomy area, and gradually added in the lateral swelling area. She was *very* gentle and careful at first, but it soon became clear that far from getting worse the swelling was getting better!
That was just 1 yr ago. I'm back to underwire bras; i almost never get sore on that maybe-LE area; and it certainly has not gotten worse.
Now all i have to cope with are the hideous mastectomy bras that make me feel like i'm wearing battle armor. My local prosthesis store has nothing pretty, tho they were very good at fitting me: i have an Amoena, and most of the time i forget it's not a real breast. So I went to Nordstrom's and found some pretty bras in 34D, picked one and they put a pocket in. the pocket is free, but Nordstrom bras are pricey -- $80 or so, which is the same as the pre-pocketed mastectomy bras. But much prettier! (Not sure the insurance will pay, which is why i got only 1...)
The point of all this? I know LE is dead serious -- but mild truncal swelling may not be LE, especially after surgery, which leaves tissue adhesions like crazy.
And: tissue adhesions make for a lot of discomfort, which physical therapy can minimize. (I still have some muscle tightness and some adhesions, but it's way better than it was!)
And: it takes time, even with PT. I didn't even get a prosthesis for 6 weeks after surgery, and bras hurt for some months.
Too long as usual! I'll shut up.
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Thank you mouser and otter - it's comforting to know I am not the only one struggling with these issues. It's frustrating that the medical community has not given this much attention - I can't imagine it is THAT unusual? Do most of us just grin and bear it?
My new strategy is to just find a bra that I can truly tolerate. Trial and error, no doubt - I've got a drawer full of that from the past (most of them I could tolerate for a couple of hours-they became my dress up bras). Mastectomy ready is not necessary - I can modify if need be. But really, shouldn't a woman in this situation be able to walk into a specialty shop set up to deal with this very situation and find a bra that works? Does it not make sense that a tight constricting band around a radiated, surgery traumatized area might cause a bit of a problem?
The compression bra concept doesn't make sense to me - the lymphatic system in that area of the body is too diverse and crucial - too many channels would seem to get shut down. And I agree that mild truncal swelling may not be LE - but whatever it is, it's darned annoying.
I do think I still have tissue adhesions. I can feel odd places that "pull" when I stretch in certain ways. My PT seemed to think I didn't need to be there any more after 5 sessions. I'm starting to think otherwise; I'd be curious to know if some deep tissue massage would help release some of this tugging I still feel.
Underwire? VERY impressive. The very thought sends chills down my spine. But it's not something I've ever really needed, so I'll just continue to not go there.
I"ll still pose the sports bra question - what does a "unilateral" (such a sexy description) bosom do to try to replicate the look of a smooshed breast? Apparently I need a variety of foobs to handle different activities. I haven't even considering the swimming option yet...
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Yes, sadly, you need different foobs for different situations. I have found that the best foob for sports bras as well as swimming is the Amoena 126 Leisure form. I actually need different sizes for different swim suits and sports bras depending on the smoosh factor. The forms are relatively inexpensive, @ $20 or so. Be careful with sports bras, since they constrict your trunk area. Hope this helps.
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Hi Marmsie --
i was warned, in a different context (leaky bladder after 2 abdominal surgeries), that there's a huge difference between PTs who do myofacial release and those who mostly just teach you how to do exercises... But it probably holds for mastectomy scars too. I've had full range of motion for my left arm for months -- but my axilla still feels (and looks) quite tight when i raise my arm. Luckily the same PT who does pelvic floor myofascial release does chest wall too, so she just keeps working on it... Maybe you can get a new referral from your primary care?
I agree that the bra options are pitiful -- at least in smaller towns! And pricey beyond belief! I don't think i ever spent more than $20 on a bra before bc --$80 is ridiculous, even if the insurance does pay it!
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I'm a unilateral, too, and sports bras are definitely an issue. I actually found one that works really well. It's an Underscore from Penney's, and I got it on sale for $12. It has stretch foam cups, so the squish factor is non-existant. It actually looks nice enough to wear under regular tops. I use an Amoena 126 in it. A bonus is that the inside cup lining is lose, and you can just cut an opening in it for inserting the form. It also has a hook closure, so you can adjust the band. As a matter of fact, you could actually wear it without hooking it close, since it's a racer back. I had a muscle spasm over my ribs the other day, and unhooked it, and it still stayed in place. It's not a bra you can wear without a top over it, though.
I, too, hate having tight bands. I never was very uncomfortable in bras before the surgery, and now it's even worse. I had the lymph nodes removed, but no radiation. My underarm does get puffy sometimes, which the surgeon said was normal. A tight bra can really aggravate it, and get very uncomfortable by the end of the day. Whenever possible, I prefer to wear a camisole with a shelf bra and I pin my foam Amoena in it. It works really well under a fitted blouse.
Another vote for the Silique form. On Erica's suggestion, I bought one and love it! It's very , lightweight, and doesn't make me sweat like my older form. At about $120, it wasn't outrageous so I didn't mind buying it out of pocket. I had gained some weight, and needed a slightly larger form anyway. Being a large A/small B like yourself, the weight of the form is a non-issue, so light is right for us!
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The search is on. In the past 10 days I have tried on about a dozen different bras, actually purchased 2. Both are classic off the rack bras, my prosthesis works just fine in them. Both have bands that seem to meet my curious requirements (I went up to a 36 though I measure 34). A lot of bras won't work for me in that bigger band size as the cups tend to be spaced farther apart. An interesting process.
I now see that I have another issue that has been overshadowed by the irritation of the band tightness. I have a glob of fat, swelling or something that protrudes a bit just in front of my shoulder. I don't even know how to explain this. My mastectomy scar runs from low in the middle of my chest up to and just into my armpit. The skin is pretty "taut" around the scar, then this puff out above the scar. The top of the bra cup and/or strap does NOT lay across this very well. Darned uncomfortable after a bit. Back to sports bras as the area is irritated after trying to look "normal" during a few days away with my hubby. I need to track down that Ameona 126 and an appropriate sports bra. Thanks for the tip on that product.
I confess, my self esteem seriously needs to find a way to JUST LOOK NORMAL that doesn't involve being seriously uncomfortable.
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Good for you!
Back when I was new at this I found trying on different bras to get really stressful. Nothing could leave me upset and unhappy faster. So I know that you've been through a hard time.
I once read an article about a shop in Paris that custom-made bras for women. IF they'd make one you liked it would be wonderful. Given the experiences many have with specality shops it could also be a huge waste. But still, maybe worth a trip to Paris.
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anyone wearing Bosom Buddy breast forms- they look interesting and comfortable and seem to have some other solutions like padding for under ones arm in nicely contoured shapes. I am in fluffies which just drop off at the side as I am only 2 weeks out on my surgery/
All advice and your experiences are meaningful- thanks!
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I am not a fan of Bosom Buddy forms as they are too lumpy for me and don't give me a natural-looking shape. But some women do find them comfortable. If you're only two weeks out from surgery, it might be a good idea to allow yourself to heal a bit more. Then you can try on various forms and see what works for you. I ordered Bosom Buddy forms online and was able to return them when I found they weren't right for me.
Barbara
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Thanks Barbara, I know I need to wait as you suggest- I am a planner and it is my comfort food. The Bosom Buddy web page does say you can return them and I am looking for the experience of more seasoned vets than I.
Thanks this is good information. BTW I have visited http://breastfree.org and appreciate the info there too.
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Melissa, I think the Bosom Buddy form is a great concept, but when I received the set that I ordered online, was also disappointed. I agree with Barbara that they were "lumpy" no matter how I arranged the pillows (and I ordered the "fluff" pillows too), but the biggest problem for me was with the overall shape - much too narrow and oval insteal of triangular. Wearing them sideways wasn't a working option either.
I recently purchased a set of Still You Fiber Filled Pads http://www.stillyoufashions.com/fiberfilledpad.html and love the shape, plus they are extremely light weight and could be worn very soon after surgery, same as fluffies. They are really inexpensive too at $15.00 pair! They do seem to run a little smaller in size than other forms. When I ordered, I missed the part that said they were sold in pairs, so ordered 2 size B. When the shipment arrived I realized my error - it was to have been 2 pairs, but only 1 pair was shipped. When I called Still You about the missing pair, I asked for size C instead and they are much nearer to size B Amoena 126 and Amoena Contact Lite forms.
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Sher,
I don't know if these are a new Still You product or I just never noticed them, but thanks for alerting me. The price is certainly right! I assume they're soft, since they're fiber-filled rather than foam. It's interesting that you found they run small. For my frame, the Still You Illusions run quite large--an A cup is like a B on me. But maybe these are sized differently. Can you tell me any more about how they work in bras, etc. Could you use them as an everyday form? They sound worth a try to me.
Thanks,
Barbara
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Hi Barbara,
The B cup is 6 1/4" across at the widest point and 4 1/2" high and that includes a 1/4" seam around the entire edge (same for both cup sizes). It's kind of hard to measure projection, but I'd guess at about 1 1/2". The C cup measures 6 7/8 x 5 1/8 and the projection is the same as a B cup Amoena 126 if you lay them flat side by side. So maybe when I thought they ran small, it had to do with projection more than footprint. Do you have the Illusions that are shaped like the fiberfill pads or the Tri-Form Illusions?
I wear the Fiber Filled Pads in a Still You Cami and don't own a regular or mastectomy bra so am not sure how they would work in a shaped cup. But they don't seem to move around much at all in the cami. Actually the 126 does slide around in the Still You Cami unless I first insert it in a cover - I use the poly-fil breast forms that came with the Softee Post Mastectomy Camisoles minus the poly-fil. I have tried the SY pads in a Barely There Crop top bra, but found that nothing would stay in place! That might be because the Barely There is a bit big for me or just that they are both too light. I just tried the SY pad in an Amoena Frances 2128 cotton leisure bra that I use for my silicone forms and the pads would work very well in that too. Funny, I never thought of that combination before. So, yes, with my pocketed cami or leisure bra, the SY pads work great as an everyday form. One more thing I just thought of...........if you look at the picture on the web site, you can see that the arch seems to be higher on the bottom of the form. I wear them upside down. Not everyone would like the shape, but I find that it blends in better with my body on the side edges than a triangular form does. I'm not sure how long they will hold their shape, but at that price, they don't have to last forever, right!
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Sher,
Thanks so much for the info. In terms of dimensions, I would definitely wear the smallest size, an A. I agree that the issue for you may be projection. The Illusions I have are the ones shaped like the Fiber Filled Pads, in an A size (though on me they look like a small
. I tried the triangle-shaped Tri-form Illusions but found the dimensions of even the size A to be too large for my chest, while the projection was very shallow, so those didn't work for me. Like you, I love the Still You camisole--it's my staple garment. I particularly love it for walking and other exercising. It's silky soft and never irritates me, even if I've been hiking in the hot sun. Although Still You recommends wearing it with their Illusions forms, I find they weigh the camisole down, so I usually use the Amoena 126s. Those stay put for me and the shape looks nice and natural (although I'm still using the old 126s, which have latex filler; the new 126s are being made with polyurethane foam filler and are even lighter weight, so maybe they would move around more). But the 126s don't feel soft like silicone or like the Illusions, so I've been looking for something light but soft that still has a nice natural shape.
I went ahead and ordered the Still You Fiber Filled pads. I'll let you know what I think after I try them. Another thing about the Illusions--in some bras the pointy ends show. It sounds as if that's not a problem for you, another example of how differently various forms fit different bodies. I'm hoping that won't be a problem for me with the Fiber Filled Pads. By the way, I wear my Illusions upside down! They just seem to drape better that way.
Barbara
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Barbara, that's too funny that we both wear Illusions upside down! Do you think we should tell Still You so they could market that option?
I recently ordered the Illusions (creme filled forms in the same shape as pads) thinking that since they have a little weight to them (6 ounces I'm told) they might work better in some bra/tops that tend to ride up. I ordered them in a C because I like that size in the pads - hope that wasn't a mistake! They were ordered through a local supplier instead of online so they could bill my insurance, but they're likely to give me a hard time if they need to be exchanged as they normally do not carry Still You forms.
I think the 126 slides around without the 'covers' because my chest isn't flat and the latex foam is quite firm. Maybe I like the Illusions Fiber Filled Pads so much because they tend to conform a little more to my shape? I guess that's why there are so many options on the market today - we all come in different shapes and sizes as well as comfort levels, so we all have different needs in finding that perfect form. Hope you like the Fiber Filled Pads too...........don't forget to let us know!
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This is good enough for me, I just ordered the Still You Cami/Tank. Sigh.
I'm still not physically comfortable wearing the prosthesis full time - I'm still having nerve/numbness issues in the whole breast area (also had radiation to the area 9 years ago). I come home and first thing I want to do is lose the bra and prosthesis, which requires clothes off. Any regular bra without the filler doesn't work, and I'm still looking for the right "insert" for my sports bras. The additional challenges of being a "uni" and preferring to be balanced in public.
I'm hoping with the cami I can just pull out the prosthesis without a major wardrobe shift. The mental impact of that maneuver probably has greater impact than the physical part - I totally get that.
Thanks so much for sharing all this great information.
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Marmsie,
I hope the Still You works for you. It has a shelf bra (with pockets), but isn't very supportive for a natural breast, so hopefully that won't be a problem for you. For me (and I think Sher, too), being bilateral, we don't have to worry about whether a camisole will support the weight of a natural breast, only whether we can find breast forms to wear with it that look good and feel comfortable.
I do appreciate that after a unilateral you face some different issues. And I'm sorry you've had nerve and numbness issues to deal with. Hopefully, those will get better with time. After my bilateral mastectomy, I had extreme sensitivity for several weeks until it finally began to abate.
Let us know how the Still You Tank (camisole) works out. If it's not right, you'll be able to return it.
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OMG- you guys are light years ahead in this and now I have choices I would have taken years to find. I wondered about the shape of the BB and the fluffies don't offer anything under the arm- I was a d cup and will probably have to get two different size prosthetics as I have a large mammary shelf on the left compared to the right. But now I can have lots of choices- that to all for the info, I was down hard due to doing too much on Monday, sorry for the delayed appreciation.
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Hey here is a shout out to the smart woman who recommended the TLC Feather weight teardrops- got a pair the day before TG- a little too big but I could just trim them down and they have such a better look and shape than the post surgery fluffy- I return to work on Monday the 30th- an pretty anxious about the entire day and thank GOD I have a Dr. appointment at 2:45 so I can get out early- I feel as if I will be on display.- just another small hurdle. Thank you for the recommendation as these will make going back a little easier!
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The Still You Cami is proving to be a decent garment and much more comfortable than any bra. I've already figured out that I need at least one other different prosthesis to mimic the look of a breast in the smooshed state of a sports bra; now I need yet a third one that looks like a breast in the natural state of a shelf bra! The prosthesis I have that works okay in a traditional bra doesn't work so well in the cami - way more "perky" than my real breast and it tends to want to gravitate to the center of the generous pocket. I'm using the softie thing until I can steel myself to go shopping for another prosthesis.
Of course I also know deep down that I'm probably the only one who really can tell that things aren't looking exactly balanced - especially under winter clothes. But it really matters to me - I want things to be balanced and when they aren't I'm just on edge and self conscious when out in public. I do like the sounds of the TLC featherweight. I'm hoping the local specialty shop may have it so I can at least look it over before I buy one, whether it's there or on line.
I really thought I'd be more emotionally able to adjust to this new state of being. It's proving to be quite a challenge for me. 6 months since surgery and I'm still struggling.
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Where did you find the still you cami? please and thanks
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Do you wear the Still you Cami as an under garment?
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I've been wearing the Still You Cami as an under garment and it's fine. Actually more comfortable than any bra I have, but I have some nerve issues. I'm small busted and don't need much support for my one natural breast. It remains to be seen if I can find the proper prosthesis to "fill" the empty side in a visually presentable way that I would be comfortable wearing it as a top come warm weather.
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I also wear the Still You Tank Top cami as an undergarment. It's just a little too revealing for me to wear it alone. However, I have worn another Still You product without any other top over it. Its the Jacquard Lace Tank Top. It's cut a little higher so I feel confident wearing it with my breast forms. One suggestion on both these camisoles--don't put them in the drier. I machine wash mine, but always dry them flat. I accidentally put the jacquard top in the drier and it shrank quite a bit.
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Erica, did you get the Still You Fiber Filled Pads yet and if so, how do you like them?
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