Susan’s story

Susan and her youngest son

I started reading a blog called Toddler Planet around the time its author, Susan Niebur, an astrophysicist living in Maryland, was diagnosed with inflammatory breast cancer. Until then, I’d never heard of IBC, and bear in mind — I’m a Googling hypochondriac. What’s frightening is that there are many women out there who remain unaware of this deadliest of breast cancers.

Since finding Susan’s blog, I’ve followed her struggles and her triumphs. As I said in yesterday’s post, her story is one of determination and joy.

Susan, who’s been featured on CNN and in several publications, learned she had IBC just a few months after her youngest  son was born. I cried when I read about how she had to abruptly wean her new baby so that she could begin treatment. And I cried again each time I read her posts about the joy she found each day in her two little boys.

Susan kindly agreed to guest-post here today. So here is her story in her words:

Dear Little Rock Mamas,

I’ve just finished reading about your Race for the Cure team that is preparing for the big race on Saturday. It sounds like there are a lot of fun events going on, and I’m looking forward to reading more posts about it on your blog. Race for the Cure is a great event to raise money and awareness of breast cancer, and that’s so important, as early detection is the key to catching this “beast cancer” before it develops into a monster that overpowers even the most technically advanced chemotherapy, radiation, and surgical treatments.

You guys know how to detect most kinds of breast cancer, right? With regular self-exams, looking for a lump? Of course you do, and I know you’re reminding your readers too. But as it turns out, there’s another kind of breast cancer lurking out there, that is far more sneaky, and far more deadly. It’s called inflammatory breast cancer, and it forms inside your breast without a lump. That’s right. There is no lump. The cancer forms in thin sheets, or in nests, like a bird’s nest of cancer growing inside your breast. There are few external signals or symptoms, and they’re sneaky too, since most of them are similar to mastitis, which many of us have experienced while breastfeeding a baby, or bug bites, or sunburn. But taken together, one or more of these symptoms can signal a dangerous cancer lurking in your breast.

What are the symptoms? Here’s a list, from the IBC Research Foundation:
* Swelling, usually sudden, sometimes a cup size in a few days
* Itching
* Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)
* Ridges and thickened areas of the skin
* Nipple retraction
* Nipple discharge, may or may not be bloody
* Breast is warm to the touch
* Breast pain (from a constant ache to stabbing pains)
* Change in color and texture of the areola

And here’s my own pitch. If you notice ANYTHING DIFFERENT on one breast that’s not on the other breast, please CALL YOUR DOCTOR. Today. Because this cancer moves fast, faster than almost any other cancer, and is deadly. Only 40% of patients survive 5 years after diagnosis.

I’ve already lost too many friends to this disease, bloggers and readers just like you. Won’t you please check yourself for these symptoms, print a copy and file it away for later, and SHARE IT with your friends? Need a visual? Worldwide Breast Cancer has some really cool posters (also on flicker) that illustrate visual signs of breast cancer … using fruit instead of the human body!

I learned about inflammatory breast cancer very accidentally, when researching my mother-in-law’s breast cancer diagnosis. There was a link at the bottom of the page, and, curious, I clicked it. As I read through the symptoms, I had the strangest feeling, scoffing, well, I have that. And I have that. Hmmm, I have that too. And, when I called my doctor, and went in the next day, it turned out that I needed to see a specialist to rule out IBC. She wasn’t able to rule it out, however, since the biopsies showed that I indeed did have IBC — the deadliest form of breast cancer.

Two years later, I’ve survived cancer, 6 months of chemotherapy, 7 weeks of daily radiation, 2 surgeries to remove my breasts and ovaries, and a lot of physical therapy to deal with lymphedema, which makes my arm swell in the heat as a side effect of the mastectomy that took all my lymph nodes. It’s been a hard, hard road. But I haven’t done it alone. I blogged my way through this disease, and was very much supported by my friends online and off, as well as my family, which really rallied to come and care for me and my children. I’ve survived cancer.

The last two years have been in some ways terrible and in some ways absolutely wonderful. The terrible part is detailed on my blog, a daily history of what it’s like to go through a cancer diagnosis and treatment … and come out the other side. The wonderful part is there too, magical days with my children, weekly playdates with their friends and my mom-friends, getting back to normal with things like book club and volunteering and the kids’ school, and dancing with my husband in the chemo ward, in the rain, and in the kitchen. I’ve celebrated birthdays — of me, my children, and my children’s friends, and I intend to celebrate many more birthdays to come.

There is joy after cancer. But the important part is getting there — the after cancer part. So good luck this weekend, walk hard, and SHARE the SIGNS of inflammatory breast cancer with the people you meet. You never know. You might just save a life.

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