After Active Treatment Ends: When People Stop Asking

This essay also appears in the Breastcancer.org Blog.

When I was diagnosed with breast cancer, my family and friends rallied to support me. They expressed love and concern, and offered their help. I was grateful for the many ways they showed they cared: they cooked meals, drove me to appointments, and even introduced me to other breast cancer survivors. But soon after my active treatment ended, those same friends and relatives seemed curiously incurious about how I was doing. In fact, most of them stopped asking altogether. As I recovered from mastectomy surgery, I was anxious to get back to “normal” as quickly as possible and I tried not to talk incessantly about cancer, even though in those early days it was always on my mind. After the first couple of months, when most of my family and friends had stopped asking about my health, I told myself their silence was entirely appropriate. After all, I didn’t look any different than I had before. Though I had chosen not to have reconstruction, I wore breast forms. I had opted to do that in part because I didn’t want to draw attention to the fact that I’d had breast cancer. So, why should I expect people to keep asking about my breast cancer? It’s not as if I had absolutely no one with whom to share my experiences and concerns. My husband was (almost) always happy to listen, and one good friend continued to ask me from time to time how things were going. But with virtually everyone else, it was as if nothing had ever happened. Although I felt very strongly that I didn’t want to be defined by breast cancer, I found myself wishing I could talk more openly about it. However, it seemed as if my friends and relatives wanted to forget that I’d ever had cancer. As long as I seemed fine, maybe they could assume I was fine. As long as they couldn’t see the ways in which cancer had changed me, perhaps that made it easier for them to imagine that cancer hadn’t changed me at all. As anyone who’s gone through diagnosis and treatment knows, that wasn’t true. I wished I could share both the good and the bad of cancer’s aftermath with my loved ones. I’ve sometimes wondered whether my women friends and relatives refrain from asking how I’m doing because of fear — the anxiety that they might be the next person diagnosed with breast cancer. It’s not an unrealistic concern, given how many women are diagnosed each year. Mostly, women manage not to dwell on it, but maybe my diagnosis had brought that fear to the surface for those close to me and reminded them of their own mortality. Asking how I’m doing might bring the fear rushing back, so perhaps it’s easier not to. I’ve also imagined that people might feel awkward about my breast-free state. Maybe they’d rather not think about the fact that I have a flat chest. I’d like to tell them that the flatness doesn’t bother me, that I’m just glad to be alive. Maybe I’d make a joke or two about my lack of cleavage. Maybe I’d even offer to show them. But it’s not a conversation I feel free to initiate myself. Of course, it’s possible that I’ve got things backward. Maybe my family and friends would love to ask me lots of questions, like how I feel about having chosen non-reconstruction, or whether I have any lasting side-effects from treatment, or if I’ve had any cancer-recurrence scares. Maybe they’re curious about all of that, but don’t want to intrude and don’t realize that I’d welcome their interest. Have you had feelings similar to mine about the reactions of your family and friends? Or do you prefer that people not ask how you’re doing, since you’re trying to move on? I’d love to hear from you about the things people have asked, or not asked, since you’ve finished your active treatment.

A New Use For the Lowly Tissue

For those of us who choose to wear breast forms after a mastectomy, perspiration behind the forms can be a problem. It only gets worse during warm weather, and hot flashes don't help, either. After years of experimenting with various types of silicone and non-silicone breast forms, as well as different pocketed bras and camisoles, I've found help from an unlikely source — a simple Kleenex* tissue.

When I was first fitted with silicone forms, I noticed something curious. The right side of my chest, which had been treated with radiation, didn't get hot underneath the new forms. But the left side was a different story. Although I don't normally perspire much, the un-radiated side became hot and sticky within a few hours. Apparently, radiation had destroyed the ability of my right side to perspire, but no such luck with my un-radiated left side.

I went on a quest to discover a breast form or a pocketed garment or a combination of the two that would create a comfortable, sweat-free environment. I tried silicone forms, like the Amoena Energy, that are designed to minimize perspiration. They helped a little, but didn't get rid of the problem. As for bras and camisoles, while some pocket fabrics felt better than others, none prevented me from perspiring. I even tried cotton pads designed to soak up perspiration under the arm, as well as nursing pads. I found both uncomfortable and even itchy against my skin.

I soon realized that non-silicone forms were the least likely to cause perspiration. I wore foam forms while hiking and during other strenuous exercise and they worked wonderfully, especially when I used them in a soft pocketed garment like the Still You camisole. But even when wearing foam forms, I would occasionally sweat behind the form and might even get a heat rash on a hot day or after exerting myself. Once I had a rash, I had to be extra-careful to keep the area cool. That's when I turned to my Kleenex tissue box.

I reasoned that with a tissue next to my skin, if I began sweating I could remove the damp tissue and replace it with a dry one, thereby preventing further irritation to my chest. Even if I were out and about, all I had to do was have an extra tissue or two with me. I tried out the idea and it worked!

I simply folded a plain Kleenex tissue (not one with lotion added) in half, then again in thirds, and placed it just above the band of my bra or camisole. Even when I wore an unpocketed bra, the tissue didn't move around. And I found that, in addition to absorbing perspiration beautifully, the tissue fiber felt soft and silky against my skin. Who would have thought? And, even better, my rashes seemed to go away much more quickly.

Still, for a long time I resisted using tissues against my skin regularly, and only resorted to them if my skin felt irritated or rashy. But this summer, I've finally embraced the concept and, to my delight, the lowly Kleenex tissue has kept me cool and dry, even on some very hot days. And since I've started using tissues on a daily basis, I haven't had a single heat rash. It may seem like an inelegant solution, but for me it's been an effective one. Hopefully, it will be for you, too.

*I've recommended Kleenex tissues because when I've tried other, less expensive brands, I've found them too abrasive. 

There Are Worse Things Than Losing My Breasts

Since I had my bilateral mastectomy, I've tried to keep the loss of my breasts in perspective. There are worse things that could happen. For me and for many of us who have had breast cancer, the news we most fear is that our cancer has spread beyond our breasts — that it has become metastatic.

Recently, two contributors to BreastFree.org received this devastating news many years after their original diagnoses. One of these women had early stage breast cancer and had been told that the odds of her cancer spreading were only 1%. The other had a serious Stage 3 cancer, but after eight years with no evidence of disease, she had begun to hope that she was cured. I ache for these wonderful women. And their stories remind me not to take a single day for granted.

Some cancer survivors describe the appreciation of life that comes from confronting their mortality. For me, after my initial diagnosis, everything seemed more vivid and wonderful — just taking a walk could bring me to tears because the flowers and sky looked so intensely beautiful. And that intensity extended to my family. I felt a passionate love for my husband and sons, a depth of feeling that all too often becomes submerged by the routines of daily life. And all too soon, as I recovered from surgery and resumed those routines, that intensity faded.

But my perspective has permanently changed. I make a conscious effort every day (well, almost every day) to slow down and enjoy my friends and family, and the world around me. If I ever receive the frightening news that my cancer has metastasized, I want to feel that I've enjoyed my good health while I've had it.

Even for those to whom the worst happens, there is reason for hope. Many women with metastatic breast cancer live for years, sometimes decades, with a high quality of life. A number of the treatments available today are gentler than in the past, and if one fails there are usually others that can be tried. I fervently wish that my two friends respond well to treatment and have many more years to stop and smell the roses.

Photo courtesy of Wikimedia Commons.

I'm Now Blogging on Breastcancer.org, in addition to here at the BreastFree Blog

I've long been a fan of the Breastcancer.org website. It offers a tremendous amount of information and support for women newly diagnosed with breast cancer, as well as for those going through treatment and those struggling to find a new normal afterwards. While Breastcancer.org doesn't explore non-reconstruction as comprehensively as BreastFree.org, the editors have recently expanded their coverage of this important subject.

One reflection of that change is that I've been asked to contribute to the Breastcancer.org Blog. Earlier this week, my first article was posted. It's entitled Living a Breast-Free Life. In it, I introduce myself by telling my personal story. In subsequent posts, I hope to address issues of concern to those of us who have chosen to live breast-free. I also intend to continue posting here at the BreastFree Blog.

I hope you'll check me out at both places and that you'll feel free to add your own comments.

How Will My Chest Change in the Weeks, Months, and Years After My Mastectomy?

I've been asked this question many times by women who visit BreastFree.org. Some wonder whether lumps and bumps left after surgery will smooth out. Others worry about concavity. For most, the answer seems to be that while some small changes may occur over time, it's unlikely your chest will undergo a dramatic transformation.

If you're slim, your ribcage may become visible after mastectomy surgery. Because you had little fat to begin with, once your breast tissue has been removed there may not be much padding between your skin and your rib cage. Usually, it's only after post-operative swelling resolves that you may notice the outline of your ribcage beneath your skin. Unfortunately, your chest is unlikely to plump up over time. As my surgeon explained it to me, fat cells don't migrate from other parts of the body to fill in the spaces. Fortunately, not all slim women have this issue, but some do.

If you're on the heavier side, you may find that you have too much tissue under your arm at the end of your incision. This phenomenon is known as a "dog ear." A dog ear can also occur at the other end of your incision, next to your sternum, though this is much less common. Slimmer women can have dog ears as well, but they're usually smaller and less bothersome. If you merely have little puckers at the ends of your incision line, these will likely flatten out over time, but larger dog ears generally won't resolve on their own.

I haven't been able to track down the origin of the term "dog ear," but basically a dog ear occurs because the elliptical incision used to remove a breast is closed in a linear fashion. This causes tissue to bunch up at the ends, especially under the arm. If your breast surgeon knows you don't want reconstruction, it should be possible to avoid or minimize dog ears, though your incision line would likely have to extend further under your arm.

Even if you wind up with dog ears, the good news is that they can be fixed. However, you will need minor surgery, preferably by a plastic surgeon. The procedure is normally done on an outpatient basis, during which the dog ear is excised. This usually results in a longer incision line, but a smooth result. Lumpiness caused by less-than-perfect surgical technique can also often be revised by a skilled plastic surgeon.

Another unwelcome surprise after your mastectomy swelling recedes can be some degree of chest concavity. This can vary with the type of mastectomy performed, the amount of body fat left on your chest after surgery, and even your underlying ribcage anatomy. Further, if you've had implant reconstruction and opted to have your implants removed, there's likely to be more pronounced concavity, as implants put pressure on the ribs and tend to compress them. This is especially true if you've had the your implants in for a long time.

The small amount of concavity that may occur after a simple mastectomy probably won't be noticeable in clothes even if you choose to go flat. If you wear breast forms, the concavity is easily corrected and should have no impact on your appearance in clothes.

Bottom line, while problems like lumpiness and dog ears probably won't disappear on their own, they may improve a bit over time and, if you're still unhappy, an outpatient revision by a plastic surgeon can leave you with a smooth, flat chest. Prominent ribs and concavity unfortunately won't diminish over time, but can be easily camouflaged. And for those of you who find yourselves with a smooth, flat chest after your post-op swelling goes down—you're fortunate, because it's likely to stay that way.

Note: I'm not a medical professional and the comments above should not be construed as medical advice.

To see some very moving images of women post-mastectomy, with and without reconstruction, visit The Scar Project.

You Don't Have to Give Up Those Strappy Dresses and Cute Swimsuits

After Amy Gallatin had a bilateral mastectomy without reconstruction, she set out to find ways she could wear the clothing she'd always enjoyed. In the following essay, she shares what she has learned.

When I was diagnosed with DCIS in the fall of 2008, I elected to have a double mastectomy. After checking my reconstruction options, I knew pretty quickly that reconstruction was not for me. I wanted to be done with poking and prodding and medical stuff.

My recovery from surgery wasn't too bad. I'm an avid Pilates exerciser and went back to class after two weeks because I was concerned about lingering range-of-motion issues. Pilates is an excellent form of gentle stretching and I credit my lack of after-effects to that regimen, along with some pro-active deep tissue work (myofascial release and massage) to keep scar tissue from building up. The American Cancer Society has guidelines for gentle stretching immediately after surgery and I did those stretches, too. I was actually very surprised by how little pain I had post-surgery. Even though I’m a complete baby when it comes to pain, I never had to use the painkillers my breast surgeon prescribed for me.

Before surgery, I was a small 34B and went braless whenever I could. I wore lots of little strappy dresses during the summer, cami tops, things like that. After surgery, I felt a pang when I looked at my strappy summer dresses and cami tops and bikinis and thought that I would never be able to wear them again. Sometimes it seems that the folks who are in the mastectomy products business would have you believe that you need to say goodbye to fun bathing suits, cooler dresses, and tops that don't go neck-high (take a look at some of the mastectomy bathing suits and you'll see what I mean). That was a little depressing. I’m a musician/performer and I tour quite a bit. I wanted to look the same as I always had, on-stage and off.

So, I embarked on a research project. I wanted to see just what was out there besides specialized mastectomy products and just how far I could push the envelope. This is what I found: strapless bras that are undetectable under strappy cami tops and dresses; "stick-on" breast forms (prostheses) that will stay in place in a regular bra; camisole tops and dresses with built-in bras; regular swimsuits that can be worn with breast forms.

After I’d found all these things, I went on a dive trip to Mexico—warm sun and fun bathing suits, what's not to love? Diving in Cozumel involves being in tight quarters on dive boats and wriggling in and out of wetsuits between dives. I wore my two-piece swimsuits with triangle tops, swim breast forms inserted, and no one was the wiser.

Tops

Soft Surroundings
Underwire Tee

I own shelf-bra camisoles in every color, and use my lightweight post-surgery foam pads in them. They're perfect for layering under a jacket, a crop top, or a scarf. The current layered look and the plethora of scarves now in fashion are great for this. Soft Surroundings makes a number of tops with built-in underwire bras, including halter tops, bandeau bras, and camisoles. I especially love their Underwire Tees because they present an off-the-shoulder look that is very flattering. They come in short and three-quarter sleeve lengths. Soft Surroundings has brick-and-mortar stores as well as an online site.

Solutions and Norm Thompson also sell camisoles with built-in bras, called “Perfect-Fit,” that are perfect for breast forms. They come in lower-cut and higher-cut versions and it’s nice to have that choice. They also recently have started offering lined lace camis that are very cute.

For working out at the gym, I look for higher-cut racerback tops with shelf bras and wear my post-surgical “puffs” in them. They stay put really well because there’s no weight to them.

Bras

Herroom has a great selection of different bras, including the reasonably priced Elita bras; one is a little pullover bra with pockets for inserting breast forms. Super comfortable.

The Rhonda Shear Ahh Bra is comfortable and good for holding breast forms. It keeps the forms separate and avoids the “uni-boob” look, plus it smooths bra bulge. The Ahh bra also comes in a racerback style for wearing under racerback-type tops. The Genie Bra is similar but has removable pads and hence openings that will accommodate breast forms. My most recent find is the Coobie Bra, a delightful little cotton lace-trimmed number with removable pads (and hence pockets). The pads can be left in with the breast form or removed. They come in a variety of colors and patterns with camisole-type straps. Cute and comfortable!

You can find strapless molded-cup underwire bras with a little silicone strip around the inside bottom of the underwire that keeps the bra from slipping down your chest with the weight of the breast form. I can wear strapless tops or halter dresses with them. Bear in mind that I’m smaller-breasted; I’m not sure how well this would work with larger, heavier forms. The little silicone strip is the key to keeping the bra in place. Warner’s makes a bra of this type.

Swimsuits

Lands’ End has a selection of specialized mastectomy suits. Also, I found that many regular bathing suits are sold with removable pads. They work well for inserting your own forms since the openings are already there. I usually use a triangle-top two-piece. (For more swimsuit ideas on the BreastFree Blog, see Swimsuit Edition, Breast-Free Style.)

Dresses

Athleta dress

Athleta sells lots of dresses with shelf bras in them. Also, I’ve found some halter dresses with removable pads, just like those in the bathing suits, which will accommodate forms.

Both Anita and Amoena, as well as other breast form manufacturers, sell “stick on” forms, with a sticky surface that enables the form to stick to your skin. These will not work without substantial support, such as a bra, much to my disappointment. I’ve tried both brands and I prefer Amoena. The sticky surface on the Anita form came off fairly quickly, within months of infrequent use. Amoena’s sticky surface holds up much better. A good feature about both these forms is that they come with a back pad—when you put the pad on, they function just like a regular form.

I use my clear swim forms if I’m wearing something skimpier, as they are much more unobtrusive when glimpsed through an armhole or down the front (many swim forms are clear and chlorine resistant).

* * *

I think the main thing is not to be afraid to experiment and see what works for you. I had some of my existing dresses altered, taken in a little around the chest, so they fit better and don’t gape. For dealing with low-cut or gaping tops, I’ve found clever panels that can be attached to a bra and cover the "cleavage" area. They also can hide scarring and prevent non-pocketed breast forms from popping out. One such panel is called Cami Secret; another, by Fashion Forms, is called Cami Too; and a third one is Cleava.

Around the house, I don’t bother wearing breast forms and many times when running out to the store I just throw on a hoodie or a scarf. I’ve gotten more comfortable with how things are over time, but I do like the way certain bra/top combinations allow me to look like the “old” me when I go out. My husband says, “No one would ever know.” I keep up with my Pilates and have added yoga to my regimen, as the stretching is very important to maintaining range of motion. Life is good.

Good luck and have fun experimenting!

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!