Dirty Words

Recently, I heard a woman who had delayed reconstruction describe her experience. She had wanted immediate reconstruction but was forced to delay for medical reasons. After her mastectomy but before her reconstruction, she said she felt "mutilated" and "disfigured." She believed that she had lost her sexual attractiveness along with her breasts. She hated the very idea of prostheses, with their connotation of "amputation," yet she couldn't bear to go flat.

I cringed at the words this woman chose to describe her breastless state. Her comments reminded me that although I don't think of myself as mutilated or disfigured, others may regard me that way. As anyone who's visited BreastFree.org knows, I view my decision not to have reconstruction as a positive one. I think of myself as "breast-free," not breastless. But I realize that not all women feel as I do about living without breasts. There seems to be a special kind of self-confidence possessed by women who don't feel the need for reconstruction.

That's not to say we all have fantastic body images. I've got plenty of insecurities—my feet are too big, my eyebrows too wiry, my legs too skinny, and on and on. But for some reason, I never regarded having a mastectomy as mutilation or disfigurement. Nor do I feel as if I've had an amputation. That's why I prefer the term "breast form" to "prosthesis." When I look in the mirror, I think I look okay. Not gorgeous, mind you, but just fine. And when I go out into the world, I feel just as good about myself as I ever did.

Choosing to live breast-free also reflects my belief that our culture is far too obsessed with youth and beauty, and particularly obsessed with breasts. I feel that ideally I should focus on what's inside, not that I've always succeeded in doing that. But needing a mastectomy really forced me to put my beliefs to the test. I wondered if I could I feel whole and attractive without my breasts. To my relief, I've found that living breast-free truly hasn't made me feel less beautiful, less womanly, or less loved. So in a certain sense, I regard myself as lucky to have been through this experience. Not that I'd wish it on anyone else. But sometimes misfortune really does create an opportunity for personal growth.

If you've chosen not to have reconstruction, I'd love to hear your thoughts on why you're comfortable with your decision and I'm sure others would read them with interest. Please feel free to comment below.

The Lebed Method

People who haven't had breast cancer assume that most of the physical trauma associated with the disease relates to our breasts. But those of us who have been there know that our arms and shoulders can be adversely affected by breast surgery, lymph node removal, and radiation treatment. Lymphedema can be a side effect, as can frozen shoulder. And many of us experience chronic tightness that can limit our range of motion.

So far, I've been lucky enough to avoid lymphedema, but I've already had frozen shoulder (adhesive capsulitis) on my right side, following a lumpectomy, sentinel node biopsy, and radiation. Not long after recovering from the frozen shoulder, I was diagnosed with a new primary breast cancer in my left breast, followed by a sentinel node biopsy on that side and a bilateral mastectomy. Now I'm hoping to avoid frozen shoulder and other arm and shoulder issues on my left side.

I've learned that the more limber I can keep my arms and shoulders, the better. And I've found a terrific way to do just that—with the Lebed Method, a therapeutic exercise program designed for women with lymphedema. It turns out that the same slow careful stretches that help open up the lymph drainage system also provide the ideal exercise for me.

The Lebed program was developed by Sherry Lebed Davis, a former dancer and teacher, along with her brother, Dr. Marc Lebed. About nine months ago, I purchased their dvd, which features Sherry Lebed Davis, who herself developed lymphedema after treatment for breast cancer, leading participants in a routine that's designed to gently stretch your body, get you moving, and improve balance.

The Lebed Method combines beneficial movement with a healthy dose of silliness. The participants start by blowing bubbles. It's not just for fun, though. Apparently, the way we breathe when we blow bubbles helps open up our lymph channels. Confession: I don't use real bubbles, I just pretend. That's one of the advantages to exercising in my own family room—no one else is looking. Another advantage is that I can take off my breast forms and enjoy the freedom of going flat while exercising.

The dvd isn't totally polished and the participants look like regular people. That's part of its charm. But its main appeal is how stretched and limber I feel when I'm done. These exercises don't provide any real aerobic benefits, however. For that, I walk every day. But for stretching muscles tightened by radiation and surgery, the Lebed Method provides reliable relief without strain.

If you're interested in learning more about the Lebed Method, which is also known as Healthy Steps, you can check out their website—http://www.lebedmethod.com/. In addition to the dvd, live classes are offered in some locales.

By the way, I have absolutely no connection to this exercise program and have never met Sherry Lebed Davis. But the exercises are so gentle yet effective that I wanted to share the information with you.

Considering the Options: Breast Forms or Form-Free

There's been a lot of discussion lately about going form-free on the Breast Prostheses and Reconstruction Alternatives forum at breastcancer.org. One particular thread, with the whimsical title "Wardrobe pics for boobless days," has inspired a number of brave and beautiful women to post photos of themselves in attire ranging from swimsuits to summery dresses to professional outfits. The result is inspiring. It's got me thinking about going without forms, something I never seriously considered before. Especially for those of us with bilateral mastectomies and those with unilaterals whose remaining breast is small, going flat is an appealing option, especially during the hot summer months.

Sometimes I joke with my husband that I didn't realize how comfortable he's had it, with his flat chest. I love to exercise at home with just a cotton tee and nothing else on top. And just once, I had the courage to swim without forms. I was alone in a swimming pool in an apartment complex. Although apartments overlooked the pool, they were some distance away. I was swimming laps and my bathing suit was chafing my underarms. I looked around and, seeing no one in the vicinity, I pulled the top of my one-piece suit down to my waist and swam another dozen laps. It was heaven!

BUT, beyond exercising in my own family room (to a Lebed Method dvd—more about that in a future blog), hanging out with my husband at home, and my one daring plunge into skinny dipping, I still wear my breast forms all the time. As those of you who have read the Breast Forms section of BreastFree know, I've found many comfortable forms. I can pretty much forget that I have them on for hours at a time. So, why should I even be considering going form-free. Why should this matter to me?

Because of all the alternatives, it's the easiest, the most comfortable, and the most natural.

For me, the process of deciding whether or not to have reconstruction turned out to be the most profound experience of my breast cancer journey. It caused me to think about who I am, what is important to me, and what risks I find worth taking. The rest of my breast cancer treatment was pretty straightforward—I wanted the cancer removed and was willing to undergo whatever protocols my doctors recommended to minimize the risk of recurrence. But when it came to the reconstruction question, I realized I was on my own. I had to figure out what was right for me, not what was right for my cancer.

What I learned was that, despite my sadness at losing my breasts and despite my desire to look attractive, I wasn't willing to undergo extra surgery just to have fake breasts. I've always liked to do things in as natural a way as possible and didn't like the idea of creating fake breast mounds (either using implants or flaps) that didn't have the feeling or function of breasts, only the appearance. Also, I recognized my extreme risk aversion—I simply didn't want to take the chance of complications, which might include chronic pain, nor did I want to risk a result that I found ugly. I felt that a flat chest would be more esthetically acceptable to me than asymmetric reconstructed breasts, or reconstructed breasts that sat too high, too low, too wide, or were too big. In short, I wanted the least intervention possible, which seemed the most natural way to go.

From the comments I receive here at BreastFree, many of you feel the same way. Many of you have a strong, positive sense of self and a good body image. These qualities make adjusting to life post-mastectomy easier. And for those who feel particularly comfortable with who they are, the decision to go form-free can be a good one.

What stops me from going all the way to form-free is a lifelong reluctance to draw attention to myself. When I wear forms, no one has a clue about my missing breasts. I sometimes think even my friends who know about my bilateral mastectomy forget. Many women who do go flat say they're surprised by how few people seem to notice, but I haven't yet had the courage to test that observation for myself.

Remember those feminists back in the sixties who burned their bras? Maybe one of these days, I'll feel evolved enough to burn (or better yet, give away) my breast forms. For now, though, I'm keeping my options open.

Finding the Perfect Breast Forms—One Woman's Saga

When I had my bilateral mastectomy in October, 2006, I lost two breasts. In their place, I've acquired way more than two breast forms. I didn't think it would be this way. When I decided not to have reconstruction, I expected to easily find the perfect pair of replacement breasts and that would be that. Instead, it's been a process of trial and error. Even if you don't share my body type or you had only one breast removed, I hope my story will hearten you in your own search for the perfect breast form.

Before my surgery, I decided that if I ever deserved to splurge, now was the time. I knew insurance would cover my first pair of silicone forms, but I'd also heard about some non-silicone forms and I wanted to try them. I ordered a pair of Amoena Leisure Forms (Style 126) from an online website. They were inexpensive, at least compared to silicone. I ordered them in a size 4, which turned out to be a good fit for me (I later found that in certain bras, a size 3 works better). In addition, I ordered a pair of Still You Illusions, also relatively inexpensive. The size Bs that arrived looked gigantic—too wide for my frame and more like a D cup on me. I was able to exchange them for size As, which fit well. Both the Leisure Form and the Illusions can be worn in regular unpocketed bras, a real plus.

My first pair of silicone forms were Amoena Climate forms, in a size 2. When I was fitted with them, four weeks after surgery, they seemed huge, perhaps because I'd gotten used to being flat. But not long after the thirty-day period during which I could have exchanged them expired, I realized they were definitely too small.

I visited another fitter who persuaded me that Nearly Me Lite Tapered Triangle forms in a size 3 were the way to go. Going from a size 2 to a size 3 doesn't sound like much of a change, but Nearly Me forms run big and were equivalent to size 4 Amoena or ABC forms. So I went from tiny to va va voom. My husband thought they looked great, but unfortunately the forms felt heavy on my small frame. I wore them for evenings out but otherwise mostly wore my Leisure Forms, which I could put in a regular bra or a Still You pocketed Tank Top.

The Leisure Forms worked fine, but didn't feel natural, like silicone. I was disappointed that I still hadn't found the perfect form. Most fitters carry only a small selection of the many available forms, so I hadn't even had a chance to try on most of the options I'd seen for sale online. I wanted to try them all! I'm normally not much of a shopper, so this compulsion to shop for breast forms was something new. But, having paid out of pocket for the Nearly Me forms, I felt I had to restrain my shopping impulse, at least for a while.

Then one day I came across a website that sold an Airway form, the Tritex Triangular, which was made of silicone but had a microfiber backing (Airway has since been purchased by Anita and this form is hard to get in the U.S.). This seemed like the perfection I was looking for—combining the natural feel of silicone with the comfort of fabric against my skin. I located a fitter who carried Airway and went to try the forms on.

I loved them! I could wear them in a regular unpocketed bra. The microfiber felt soft against my skin and the silicone real to the touch. My husband, who by now wished I would stop discussing breast forms, hoped that these would make me happy. So, I bought them in a size 2 (these forms run large and are equivalent to a size 3 Amoena or ABC form). They are wonderful breast forms—almost perfect. They do have to air dry, due to the microfiber back, so that takes a little extra time, but they're comfortable, don't make my chest perspire, and pass the hug test with flying colors.

You'd think that I would have stopped there, and I did for a while. But when I was again eligible to purchase a new pair of forms with my insurance, I couldn't resist. This time, I decided to get the Airway Tritex forms in a size 3, to get back a little of the va va voom. Unfortunately, after wearing them for a while, I realized they were too heavy for me (the Airway size 3s are equivalent to large size 4s in Amoena and ABC) and were causing me to have backaches. No amount of projection was worth that. They were soon relegated to the back of my closet, along with the Nearly Me Tapered Triangles. I feel guilty about wearing them so little, but have saved them for those occasions when I want to look well-endowed for a few hours.

I also experimented with Pals gel forms, an alternative to silicone that can be worn directly against the skin. They're much less expensive than silicone, only about $50 per pair. As so often happens, the first pair I ordered online was too big, but a second pair (which was customized for an additional $10) fit beautifully. I've found the Pals to be great backup forms and fun to wear in regular bras, but they don't prevent my chest from perspiring, so for me they're not ideal. For some women, who don't have that problem, they might just be the perfect form.

The next time I was insurance eligible, I opted for Amoena Climate forms in a size 3, a much better fit than my original size 2s, which I had long since given away. Around this time, I also discovered a new company, Silique, which makes the Comfort-Lite, an ultra-lightweight form with silicone in the front and polyurethane beads covered by microfiber in the back. The company offered to let me try a pair for review on BreastFree.org. I loved the forms and ultimately purchased them.

The Silique Comfort-Lite forms really are the best forms I've found so far. At only three ounces each for my size 3s, they could hardly be lighter. My previous favorite forms, the size 2 Airway Tritex Triangulars, feel heavy by comparison. I can wear the Comfort-Lites in an unstructured Crop Top bra by Barely There. With that combo, I barely know I have anything on. The Comfort-Lites work in almost all my other pocketed and unpocketed bras, too. And they're so soft and cool that I was able to wear them comfortably all day in the hot, sticky Florida Everglades. Like the Tritex Triangles, they take longer to dry than all-silicone forms, but a blow dryer set on cool setting can speed that process along.

So, are the Silique Comfort-Lites perfect? Well, I guess the bottom line is that they're not my breasts, so they'll never seem quite as good as the real thing. But they're a fabulous substitute. So much so that I wear them almost all the time now. I haven't gone form shopping in quite a while, much to my husband's delight. But, if something new comes along, I'll be first in line to give it a try. And sometimes, no matter how much I love my breast forms, I'm tempted to go flat altogether. But that's a subject for another blog.

Like Mother(-in-Law), Like Daughter(-in-law)

When I was facing a bilateral mastectomy, I had a wonderful role model—my mother-in-law, Reggie, who lived without breasts (and without reconstruction) for over fifty years. Reggie was a striking woman with dark wavy hair and flawless skin. She wore loose, flowing apparel, often accented by colorful scarves. The loose clothes were necessitated by severe lymphedema that developed in one arm after surgery and radiation, but they also seemed to express her free spirit and joie de vivre.

When Reggie had her first mastectomy at age 31, reconstruction wasn't available. Even after her second mastectomy, fifteen years later, reconstruction with implants was still in its infancy. In any event, given her prior radiation, Reggie wasn't a candidate for implant reconstruction. So, she was breast-free by necessity, not by choice.

Before her diagnosis, Reggie dressed very conventionally, favoring a tailored look. After her mastectomy and particularly after the development of lymphedema, Reggie felt she had to find a style that would suit her physical situation. She no longer could conform to the then-current fashions, with their tight-fitting blouses, sweaters, and jackets.

The process of creating her own style of dress had a remarkable effect on Reggie—she re-invented herself. She became freer, not just in dress but in behavior. She went back to school, became a psychologist, and pioneered the first support groups for post-mastectomy women. Eventually, she decided she didn't want the encumbrance of breast forms and went flat most of the time. No one seemed to notice, or if they did, her choice only made people admire her more.

When I was deciding whether or not to have reconstruction, the way Reggie lived her life breast-free profoundly affected my decision not to reconstruct. Because of her example, I knew my life could be full and wonderful whether or not I had breasts. After my father-in-law died, when Reggie was 64, she subsequently met and married a terrific guy, so I also knew that men could still be attracted to women who didn't have breasts. And, having followed Reggie's work with women who had undergone mastectomies, I hoped that I too might be able to help women adjust to living their lives post-mastectomy.

Though Reggie was initially surprised by my decision not to have reconstruction, once she realized that I regarded it as a positive choice, she fully supported me. Because of the example Reggie set, my husband and grown sons never regarded my mastectomy as disfiguring. In fact, my husband urged me not to have reconstruction.

Reggie passed away last September at age 82, not from breast cancer. I miss her and wish I could show her this first post on the BreastFree Blog. I'm sure she would be enthusiastic about it, as she was about everything in life.

I welcome your comments and stories about people who made a difference in your decision to live breast-free.