Personal Stories

Binney's Story

Cancer. Ugh! A woman I know who has a son with cancer told me, "Cancer just plain changes your life." I couldn't agree more. My diagnosis of lobular carcinoma in 2001 sure changed mine. Mastectomy, chemo, radiation, Tamoxifen for a while, then Arimidex, and now Femara. A second mastectomy in 2004 because I kept developing lumps that could be felt but not seen on imaging, so they kept having to do surgical biopsies. Enough of that was enough.

I never thought twice about skipping reconstruction. I've never liked pretense, and breasts with none of the internal workings of the originals were unthinkable to me. Still are. Fortunately, my husband feels the same. I miss my breasts, still grieve the loss from time to time, but I've never regretted my decision.

Just about the time I thought I was on top of the sea changes that cancer brings, I developed lymphedema. With only one lymph node removed on my cancer side, and the other side strictly prophylactic, I wasn't expecting it. I thought you had to have bunches of nodes removed to be at risk. I thought you had to be obese and out of shape. But it turns out that, no, you just have to be treated for breast cancer and be unlucky. I wish someone had told me that. I wish I'd known how a few simple lifestyle changes might have prevented this debilitating and disfiguring and irreversible condition. And since you probably don't know either, I want to make sure you have access to the information I was missing: please check out the Position Paper on Risk Reduction at the National Lymphedema Network website.

When I was in junior high (which my kids figure was about the time of the Industrial Revolution), my science teacher, Mrs. Unfer, decided none of us should go out into the world without knowing the names of all the systems that make up our bodies. The circulatory system, the skeletal system, the endocrine system, on and on. And then there was "the lymph system." For all of my adult life, that name was the extent of my knowledge about a system that circulates protein-rich fluid to every cell in our bodies, to cleanse and repair as needed. It rushes lymph to the site of any injury or trauma and dutifully carries off the offending bacteria and waste products of our bodies' battle to repair itself and fend off infection. It hauls everything to the lymph nodes, where the lymph fluid is purified and the toxic garbage excreted. Lymph, the unsung hero of our immune capacity. Who knew? Not me. Not even Mrs. Unfer.

And unfortunately, not our doctors either. Since my own lymph system broke down following breast cancer treatment, I've learned more than I ever wanted to know about this system, and more than our doctors and nurses are routinely taught in our medical schools and nursing programs. It is not treated with drugs or surgery, so it has limited interest to them. It can be treated, though, by specially trained therapists who use a unique massage routine and compression bandages to reduce the swelling and keep it under control. After that, it's largely up to us to maintain the health of our affected arms and chests by daily self-massage, careful skin care to prevent infection, and wearing compression garments — in my case, 24/7.

So what's all this got to do with reconstruction or the lack of it? Plenty. Few women are told that all reconstruction procedures carry additional lymphedema risk, since they add scar tissue (which blocks lymph flow) to an already compromised area and do further damage to the remaining lymph vessels. But even those of us who decide against reconstruction encounter unique problems when lymphedema develops. Because my lymphedema affects not only both my arms but my chest, back, and sides as well (called "truncal lymphedema"), wearing compression to control all that can be tricky, with breasts or without. Prostheses can present problems if they're heavy and cause strain on compromised tissue. Wearing a bra over the chest compression vest is hot and distressing, especially so when Arimidex or other estrogen-depleting drugs cause hot flashes. Nothing about lymphedema is easy.

Happily, there's help available. Specially designed "compression bras" like the Bellisse are helpful to some, and others find that certain styles of bras by Anita or Sassybax, or camisoles like those made by Nancy Ganz are enough to control their truncal swelling. Light-weight prostheses, such as the whipped silicone ones made by Trulife Naturalwear, can give us back both our shape and our style.

Well, sort of. Cancer just plain changes things. All those changes are hard, but some of them aren't entirely bad. For instance, my cancer journey has connected me with people I would never have had the privilege of knowing otherwise. It's given me insights into myself and affirmed my trust in a loving God. And maybe I'm even healed enough to be grateful that it's taught me more than Mrs. Unfer could ever have guessed about the mysterious workings of my lymph system.

Binney is one of the founders of Step Up, Speak Out, an excellent resource for women who have lymphedema as well as for those who would like to reduce their risk of getting it.