Musings five years post-surgery

My photograph from the Tribune article.

Recently, the Chicago Tribune published an article about options after mastectomy surgery, which featured BreastFree.org. The story was syndicated across the country in print and online. Here's a link to the article as it appeared in the Miami Herald: "Not all women choose reconstruction after mastectomy; the options are many."

Publication of the article coincided almost to the day with the fifth anniversary of my bilateral mastectomy surgery. It was a great way for me to mark that milestone and to reaffirm my decision not to have reconstruction.  

I was delighted that the article presented a balanced look at the choices available for women after a mastectomy and particularly pleased that the reporter, Alexia Elejalde-Ruiz, highlighted my view that many women who choose not to have reconstruction still feel "whole" after the surgery.  

As some of you probably know firsthand, doctors frequently urge their patients to have reconstruction, believing that they won't feel happy without it. While I agree that reconstruction helps some women feel normal and whole after a mastectomy, I've met countless others who have chosen not to reconstruct and nevertheless feel complete as women. One of the missions of BreastFree.org is to educate doctors and encourage them to present non-reconstruction as a viable and positive option for their patients. So, I was very glad the Tribune story mentioned this issue.

The Tribune article also represented my coming-out party. While I've been very open about my surgery with friends and family, I've chosen not to include my full name on BreastFree.org, nor has it appeared in any other published materials. It felt good to finally put myself out there. Over the years, as I've met and communicated with so many women who have chosen not to have reconstruction, I've realized what a special sisterhood this is. I'm proud to be a member!

Climate Change and Breast Forms

Hot weather can affect how breast forms feel

I'm not going to get into a discussion about global warming here. When it comes to breast forms, the normal variation from winter to spring and summer can make a big enough difference, without our worrying about whether the world is getting warmer or cooler. Just as the rest of our bodies feel different when the temperature and humidity climb, our chests react to our breast forms very differently.

Right now, I'm experiencing the climate change that spring brings, only in reverse. I just returned to Boston from Miami, where the weather has been summery, which means tropical heat and high humidity. I all but gave up wearing my silicone breast forms during the last few weeks. Not only did I tend to perspire behind the forms, but the humidity caused my bras to feel tighter and more clingy. Now that I'm back in Boston, where it's below 70 degrees and much drier, I'm enjoy wearing my silicone forms again.

When I first learned I needed a mastectomy, I talked to a friend who'd had a bilateral mastectomy eight years earlier. Not only had she decided not to have reconstruction, she chose not to wear silicone breast forms. Instead, she wore a regular Bali bra with Amoena foam leisure forms. She explained to me that the silicone made her feel weighted down and conscious of having something on her chest. With the foam forms, she said, she felt "free".

That conversation took place almost five years ago, so now it's been thirteen years since my friend had her mastectomy. During that time, silicone breast forms have become lighter and manufacturers have developed ways to minimize perspiration behind the forms—microfiber backing, special cooling pads, new materials designed to regulate body temperature, etc. But when it's really hot and humid, silicone can still present a problem.

I've found several leisure forms that have a flattering natural shape and feel comfortable to wear. You can read about them at BreastFree.org in the Breast Forms section, under the heading "Non-Silicone Breast Forms." When the weather became hot in Miami, I thought about my friend and about her decision to feel "free" wearing foam forms. I started wearing my non-silicone forms almost all the time. I found that I felt light and free, not sticky and not worried about whether and when my forms would become uncomfortable. I wore the foam forms in both pocketed and regular bras and felt great dancing at my cousin's wedding in a nice pair of weighted Amoena Leisure Forms with Comfort +.

The Comfort + technology, a recent innovation in some Amoena silicone forms, has been added to their new leisure forms because it's possible to perspire even when wearing ultra-light non-silicone forms. But perspiration is far less of a problem with foam or microbeads than with silicone. At the wedding, which was outdoors, the temps were high, yet I danced the night away and at the end of the party my chest was still cool and dry.

I've heard from many women who consider perspiration behind their forms a problem. For others, it's not an issue. Some women find that the newer silicone forms, like the Silique Comfort Lite, the Amoena Energy, the Anita Tritex, or the TruLife BodiCool, effectively solve the problem. Ironically, prior radiation can provide a benefit. I had radiation on my right side and I never perspire there, no matter how hot it gets. But my left, non-radiated, side is another story.

If you're like me and want to avoid perspiring behind your forms, consider switching to non-silicone during the hot weather. You may find it so freeing and comfortable that you won't want to go back!

Swimsuit Edition, Breast-Free Style

It's the time of year when spring flowers and balmy air inevitably lead to thoughts of summer and swimsuits. Like many women, I always found swimsuit shopping a bit of a trial. Since I had my bilateral mastectomy, it's been downright challenging. Until recently, I've mostly dealt with the issue by avoidance. A few weeks ago, all that changed.

My husband and I traveled to Key West with friends for a long weekend. I had known there would be a pool at our hotel but after trying on my two mastectomy suits, I decided not to bring them. I hated the way they looked on me and in addition, they weren't comfortable. Like most mastectomy suits, they were cut high in the front and under the arms. I realize that suits are designed this way so women will feel secure and scars won't show. But I can't stand suits that come up high under my arms. They chafe me, especially when I swim. So, off I went to Key West with no bathing suit.

It turned out to be a hot weekend and the pool provided a welcome respite for everyone except me. While my husband and friends enjoyed a refreshing swim, I sat on the edge of the pool dangling my legs in the water. I vowed that I would never let that happen again.

Back at home, I visited a few local stores, but found almost nothing in styles that suited me. So, I began scouring the Internet for options. Before investigating mastectomy swimwear, I decided to look for non-mastectomy suits that could be adapted . A friend who has lived breast-free for many years and is an avid swimmer always buys non-mastectomy swimsuits and sews inexpensive foam breast forms into them. So, I knew that could work, especially if I brushed up on my skills with a needle and thread.

First, I checked out Zappos.com, which has a huge swimwear selection. As I perused the styles and read the descriptions, I noted that a number of suits featured "removable soft cups," which are thin cups designed to provide a smooth shape over a natural breast. Since such cups require pockets, that meant there would be a place for me to insert a breast form.

Next, I searched for styles that might be appropriate. For me, that meant high enough in front but not high under the arms. I discovered a number of one-pieces and tankinis that fit the bill, with halter tops or inset straps. Since Zappos has a generous free shipping and return policy, I decided to order several and try them. Zappos and all of the companies mentioned below allow swimsuit returns, so long as suits are in original condition when returned, with sanitary strips and tags in place.

Most of the suits I received from Zappos didn't work out, but two of the one-pieces fit beautifully. I kept them and can now go to the pool with confidence and comfort. Among the various items that I ordered, I discovered that sometimes the pocket openings from which the "removable soft cups" could be removed were too tiny to allow insertion of a breast form, even a foam one. However, the pockets could probably be expanded by anyone reasonably adept at sewing. I also learned that the more expensive brands were the most likely to feature nice stretchy pocket openings. The suits I wound up with were by Michael Kors and DKNY and in the $100 range.

Even though I had found two suits that worked for me, I didn't stop there. I was on a quest! In the course of my research, I discovered a number of interesting possibilities.

I found a nice line of swimsuits called Hapari, marketed as "modest" swimwear that is "stylish and comfortable for all body types." Most of the suits are made with pockets for silicone inserts (enhancers), which can also be used for breast forms. When I spoke with a company representative, she said that Hapari has been selling swimsuits to an increasing number of women who have had mastectomies. I ordered a suit to try and, while the fit wasn't quite right for me, others may like the style and fit of these well-made, reasonably-priced swimsuits. If you decide to try a Hapari suit, make sure to check whether the style you like has pockets.

On the higher-priced end, there are some sexy, stylish suits offered for women post-mastectomy. Hilary Boyajian at Chikara Design uses fabrics in interesting ways to create great-looking suits. Veronica Brett offers fabulous-looking swimwear, more for lounging around the pool than serious swimming, but gorgeous nonetheless. And About the Girl features a line of very appealing suits, including cute bikinis and tankinis. About the Girl is based in the U.K. but will ship to the U.S. and other international destinations. As noted above, all of these companies allow returns.

My research next led me to Nicola Jane, a British mastectomy-product retailer which sells attractive suits, including some under its own label. Like About the Girl, Nicola Jane will ship to the U.S. If you'd rather not order from the U.K., a nice selection of Nicola Jane styles can be found at the Women's Personal Health Resource, a U.S. online retailer. The Women's Personal Health Resource also carries a couple of adorable mastectomy suits by Jamu, an Australian designer of mastectomy swimsuits. Please note that when you return a swimsuit to the Women's Personal Health Resource you will be charged a 15% restocking fee in addition to shipping charges (unless you are exchanging the suit for another item).

Spanx, the shapewear company, now makes swimsuits, including several with removable cups that might work well as a mastectomy suits. About the Girl offers one Spanx suit on its website, but this and others can also be purchased from U.S. sites and in local department stores.

I don't mean to give short shrift to major manufacturers of mastectomy swimsuits—Amoena and Anita have some very attractive suits in their current lines, and Land's End has been a consistent source of reasonably-priced mastectomy suits for many years. These three manufacturers tend to design mastectomy suits that come up high under the arms. If that's not a problem for you, you may well find a great suit from one of them.

Overall, I found the new emphasis on creating stylish mastectomy swimsuits heartening. Matronly mastectomy suits still abound, but now choices are available for those seeking something more youthful and attractive. For women who wear an A cup, though, it can still be hard to find mastectomy suits that aren't too big on top. Hopefully, the future will bring even greater selection and options for different cup sizes. In the meantime, for smaller women, wearing regular suits that feature removable soft cups may offer a viable alternative.

So, things are looking up when it comes to swimsuits for those of us who have chosen to live breast-free but still wear breast forms. If you prefer to go flat, some of the Chikara suits could work for you, as well as many simple tank suits and other designs. Happy swimming!

I welcome your comments, suggestions, and feedback about swimsuits that have worked well for you.

How to Make a Micro Bead Breast Form

A new and inexpensive non-silicone breast form has recently become quite popular—the Silique Fabu-Forms Microbead Breast Form. I recommend the form in BreastFree.org's Breast Form section, under "Non-Silicone Forms." The Silique form is also sold as the Micro-Bead Lightweight Breast Form on the American Cancer Society's TLC Tender Loving Care website. 

LindaLou, a very enterprising and talented contributor to BreastFree.org, decided to make her own pair of micro bead breast forms. She documented her experience on breastcancer.org and has kindly granted me permission to share the instructions here. They are printed below, complete with an update with further suggestions and refinements. (Photographs originally accompanied the instructions, but unfortunately, they are no longer available.) Happy sewing!

I recently purchased a pair of TLC's Micro-Bead Lightweight Breast Forms. I have been thoroughly impressed with their lightness and comfort. While the TLC forms are reasonably priced at $40 each, buying a pair with shipping is $86. I decided I wanted to see if I could make comparable forms more cheaply.

I bought a bag of the Fairfield Polystyrene Micro Beads at Jo-Ann Fabric store. The bag is HUGE!  And dealing with the itty bitty micro beads that fly all over the place is a challenge.


I bought a lightweight polyester/spandex stretchy knit fabric in white to use for the front cover on the form. I wanted to find a slightly heavier and less stretchy fabric for the back cover so it would keep its shape. The back cover on the TLC form is 100% cotton with minimal stretch only. I decided to buy a piece of lightweight soft cotton corduroy in a pretty pink pattern. I preshrank the cotton fabric when I got home since I did not want it to shrink later after the form was made.

I decided to use my size 8 TLC micro bead form as a template to cut out the front and back covers for the new form. For the back cover, I set the form on its back and just traced an outline around the form using a sewing marking pen. I made the tracing about 1/4 inch larger to allow for the seam to be sewn later.


Here is the back cover fabric cutout. You can see the 1/4-inch seam allowance around the edge.


I then needed to make a pattern for the front cover. I decided to drape the front of my TLC form with the white stretchy fabric so that it would allow for the extra fabric needed to make room for the micro beads and provide some projection of the breast shape. I made a very rough outline using my marking pen around the form.


I then placed the pink back cover in the rough outline to compare sizes. I knew the white front cover would be larger than the pink back cover but wanted to make the shape uniform, so decided to add a full 1/4-inch margin around the shape of the back cover to create my front cover template. I thought this would allow enough ease in the front cover to provide movement of the beads similar to the TLC form. 


I then cut out the front cover pattern in the white fabric and placed the front and back covers together for comparison. When I make another form, I may allow a little more easement allowance on the front cover.


I then pinned the front and back covers together in preparation for sewing the seam. I had to work the larger front cover to the edges of the back cover and try to distribute the extra fullness evenly in the front. I used several pins to hold the covers in place.


I sewed the front and back covers together using a basic straight stitch about 1/4 inch away from the fabric edge. I had to go slowly and gently stretch the fabric to work the extra fullness in from the front cover. I also left about a 2-inch opening to use for filling the bag with the micro beads. I was curious what the weight of the covers was before adding the micro beads, so I used my kitchen digital scale to check the weight. They only weighed 0.30 ounces.


I then had to figure out how to get the micro beads into the form covers without making a huge mess. I decided to work over by the trashcan. I cut an opening in the top of the micro bead bag big enough to allow a one-cup measure that I could fill with the micro beads. I used the barrel of a cookie/frosting gun and placed the bottom end of the barrel inside the opening in the form covers. I held all this over the trashcan while I poured a full cup of micro beads into the barrel and into the form. The little micro beads are full of static and stick to everything. Make sure you keep a vacuum handy to clean up any spillage. You can also rinse your hands in water to get them off your hands. 

I filled the form up to the point where I felt it had enough fullness but still left some room so I could finish closing the seam with an overcast edge stitch. This is one place I goofed because I should have gone ahead and done the overcast stitching before filling the form with micro beads except for the 2-inch opening. It made it much more difficult to overcast the entire seam after the form was full of beads. That's how I ended up with micro beads all over my sewing machine!

The new form is a little fuller and less squishy than the size 8 TLC form. If I make the front cover a little larger with more easement, it will probably make it more squishy but I sort of like the way the new one is now. It doesn't shift shape as much and tends to stay in the right position slightly better than the TLC one. But overall the home-made form feels and looks a whole lot like the TLC one.  I put both forms into one of my Target camisole tops and you really can't tell a difference in clothing.  (the home made foobie is on the left side of the picture, the TLC is on the right)

I hope this has been helpful. I am glad to know that making micro bead forms is not all that difficult and certainly is a lot cheaper than buying multiple sets.

UPDATE:
I wanted to update my process for making the micro bead forms at home since I have made a few pairs now. Here are just a few tips with pics if you decide to make your own.

1) I found that trying to piece the larger top cover of the form to the smaller back cover was easier if I ran a simple basting stitch in the front cover first and then gathered it up evenly to fit the back cover. 

2) I also found that keeping the seams on the outside of the form tended to make ridges show through the bra or top you wore them in and they just didn't look as finished as I would like. So, I decided to leave a small opening (approximately 1.5 - 2.0 inches) when stitching the front and back covers together (keep right sides together). Then I turned the fabric inside out so the seam was hidden inside.  I folded the raw edges of the opening to the inside of the pocket and pressed them smooth. After filling the form with micro beads I then just topstitched the small opening closed using the sewing machine. 

3) Fabric selection is important also. The fabric for the back cover needs to be either non-stretch cotton or very minimal one-way stretch cotton because you need it to keep the triangle shape of the form. The material for the front cover of the form needs to be a two-way stretchy fabric with generous ease so there is room for the micro beads to fill it out with the desired projection profile in front. Both fabrics should be washable.

4) Stuffing anything with micro beads is a pain in the %$#@!  I thought I must just not be doing it the right way but I have spoken with numerous sewing store employees who say they have never found an easy way to get the micro beads into any project. I tried using a turkey baster but finally gave up (it was too slow to fill and got clogged) and started using a cookie dough press tube which was wider at both ends. I take the bag of micro beads out on my deck and try to fill the forms there to reduce the likelihood of hundreds of little micro beads floating around my sewing room. Definitely keep your vacuum handy if you use them indoors!

5) If you plan on making several pairs of forms it's a good idea to create a muslin pattern that you can label and include any markings as a reference.  I have made a couple pairs for friends and make a muslin cloth template of their form size so I can make more later if needed of the same size. 

Hope this helps any of you wanting to make your own breast forms. It really is not that difficult and certainly cost effective if you would like several pairs or different sizes!

Believe It or Not, They Don't Notice!

Many of us who have not had reconstruction find that it feels wonderful to go form-free. I often don't wear my forms when I'm at home, but (so far) I always wear them when I'm out in public. Some women, however, choose not to use breast forms at all and many of them report that people don't seem to notice their lack of breasts. One woman, Mia W., decided not to wear a breast form during her radiation treatments and wrote about her experience. She has kindly allowed me to publish her story, which follows.

Leading up to radiation, I was anxious that I would be too uncomfortable to wear my breast form. I had a unilateral mastectomy, so I'm a B cup on one side and concave on the other side — going without my breast form in public seemed unthinkable. When I finally felt brave enough to try, I learned that with some basic clothing camouflage and a little self-confidence, no one seemed to notice!

I built my comfort level with baby steps. My first forays in public were to my doctor appointments. I figured this was a group of people who would understand, if anyone would, and I wasn't looking to make a fashion statement. I resurrected my maternity shirts, which were loose and comfortable, and layered a jacket and scarf on top. When this went without comment, I tried just a jacket layer, or just a scarf layer. Both passed. Next, I wore a patterned shirt (which wasn't maternity wear) with a scarf. Still, no problem.

Going without a breast form (and indeed, without any bra or camisole) was so much more comfortable as radiation progressed that I decided to be braver in public. I went to a support group that way and no one noticed, even though I was sitting in a circle with other women who knew I had had a mastectomy!  I was the last to share during group, and everyone was very surprised. Not the polite kind of surprised meant to save my feelings, but actually surprised.

So, I tried several other venues, including a party and a lunch with co-workers. Again, it was no big deal. At the party, when the hostess turned up the temperature in the house, I took her aside and asked her to drop it a few degrees, as I wanted to keep on a camouflage layer. Because she was a close friend, I told her why.  She was surprised, too, but very supportive.

I am now one treatment away from the end of my radiation. My skin has come through better than it would have if I regularly wore the binding clothes that would've been necessary to support a breast form. I have also been more comfortable than I would have been. And, I am more confident of my appearance — if people didn't notice when I wasn't wearing a form at all, how likely are they to notice if my form isn't perfect?

I hope my experience is encouraging for you, too.

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.