Need help - pain when wearing protheses

1. You are still tender from the trauma of the surgery and it takes a long time for that whole area to heal and settle down...my Dr. said to give it six months before even trying to be fitted for a prosthesis, but I had to work..so I got one..it hurt..I couldn't use it..I ended up stuffing a scarf, a sock, a poof down my bra  ,any thing light.  I find that the bras to this day aggravate the lymphedema because the fitters try to fit you like a "normal" person and fit the band too tight ..so it cuts into your skin and aggravates any lymphedema in the arm and trunk you have going on. My not perfect solution is..wait for awhile before using a prosthesis then when you do...I use a bra extender, I measure a 34 but the extender lets me set it at 36-38....I actually tuck a soft fleece glove under the band where it digs in the back...I take the prosthesis off  as soon as I can.  For non work times I use an oversize sports compression bra (like extra large-so there really is no compression) and pin a "bosom buddy" in it (keep meaning to sew in pocket) .  The lounge sports bra thing doesn't give you alot of support...but it doesn't hurt. Hang in there.. It takes time and they do kind of cast you off to fend for yourself and downplay what are serious distressing problems.

Beacon, how are the microbead forms for hugging people? I mean, granted they feel great on you, but when you hug a friend, do they feel like the real deal to them? The foam ones don't, y'know? I even bought a bag of microbeads to try making them with LindaLou's pattern, but I haven't done it because I don't want to put in all that work and then have them feel like I have a lump of playdough stuffed in my bra.

Sheri, hello! I'm so sorry about the stupid pain! I had long-lasting pain following mastectomy until a PT showed me how to de-sensitize my skin, so if it's a sensitivity issue some good PT might help. I find that my chest lymphedema pain is worse when I wear a sleeve that's too snug at the top, so I have mine made a tad bigger at the top than I actually measure -- haven't had any trouble with them falling down, and it does relieve the chest pain. With lymphedema you might find that a cami feels a whole lot better than a bra, and it allows (even encourages) lymph drainage from the chest, whereas a bra kind of cuts it off with the bottom band. Here's a page about chest lymphedema that has a whole slew of ideas for bra/cami options that might be more comfortable for you, even if your lymphedema is only in your arm:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

On the other hand, possibly part of your problem IS chest lymphedema, which is often very painful and can be hard to diagnose because our chests have all this new "geography" after surgery.

I really hope you get some answers and relief soon, as post-mastectomy pain really messes with your life! Do let us know what you discover.

Gentle hugs,
Binney

Wow, I just wanted to comment that I think it isn't right for your BS to not see you for a whole year. I saw my surgeon about 4 times in the first two months, then every month for the first 6 months Now I will see him every 3 months. I've had plenty of opportunity to ask questions about pain and range of motion issues. He also took out my port and I've seen him twice regarding that alone.

Regarding bras, I'm 9 months out from my mx and still am not "comfortable". Anything that rubs near my armpit really bothers me after awhile and I still can't wait to get it off. I concur that a bigger band size is better. I think it is too soon for you to be comfortable, sorry to say. You are still healing.

Best wishes for a better 2011!

Hi sheri56,

Sorry you're going through this. As you can see, you're not alone in finding bras and breast forms (prostheses) irritating after surgery. I also was sensitive and easily-irritated for quite a while after my surgery. I got fitted after four weeks but really couldn't wear forms comfortably for some time after that. For me, the biggest help was Still You pocketed camisoles (called "tank tops" but they're really classic camisoles) and foam forms (style 126) by Amoena.

One thing that I think is a great disservice to us post-mastectomy women is the insistence by fitters that we need to wear our bra bands tight for "support." I bought into that at first, which I think is partly why I was so uncomfortable in the early days. Even though I now wear my bras comfortably loose, I have NEVER had a bra ride up on me (unless I was wearing totally unweighted forms). And I don't find that there's excess weight put on my shoulders. With today's lightweight forms, that shouldn't be a problem unless you wear a very large size prosthesis. Even then, I don't think a tighter band would alleviate that significantly, but it can certainly cause discomfort.

When I read your post, one of the things I wondered about was whether perhaps you have slight truncal lymphedema as well as having it in your arm. As Binney said, above, that could certainly account for the pain you're experiencing. A good lymphedema therapist should be able to evaluate that for you.

It took me a while to find really comfortable mastectomy bras. The first ones I was shown were way too rigid for me, especially since I only wanted to wear small breast forms. You might check out two sections of my non-profit website, Breast-Free.org: "Bras and Camisoles" and "Breast Forms." I recommend products that I and other women (many of whom I met on this forum) have found comfortable. My emphasis is always on comfort, with attractiveness a secondary factor. Bear in mind that the recommendations reflect my own experience and that of other women, but may not exactly apply to your situation, especially given your lymphedema.

The main advice I have is to experiment. I've found that adjusting to life after mastectomy without reconstruction is a process (likewise, women who have reconstruction go through a long process of expansions or, if they've had flap surgeries, revisions). Sometimes, it takes quite a bit of trial and error before you find what works for you. But the effort is worth it and, fortunately, almost everything is returnable (if you don't wait too long).

One thing that I've found incredibly helpful, mentioned above by others, is bra extenders. Somehow, I didn't find out about these until four years after my surgery! Now I can wear bras comfortably all day, when I used to wear them only for going out to dinner or other shorter periods. (Otter, have you tried Trulife bra extenders? They come in 2, 3, and 4 hooks and work well with my mastectomy bras. A couple of regular bras I have required different extenders, since the hooks aren't spaced as widely apart.) 

I hope this helps. And I hope you feel better soon.

Barbara

Binny4 - sorry for the long delay.  Of all the breast forms, I find the micro beads to be most "natural" feeling to hug.  Foam, not all, and silicon not really either.  the micro bead ones need a soft cup bra that will hold a shape for them, otherwise they flatten out.   But I really like them - I had my husband "feel them up" and he was surprised they were not so hard.  Try em out - they're pretty good