Fighting the Cancer a Mammo Can’t Catch By Margaret Renkl Health, June 2008
It was a long night, and Susan Niebur was feeling low. Normally, this working mom in Silver Spring, Md., can keep a shocking number of balls in the air and still smile. She’s a physicist who works part-time as a consultant to NASA; an at-home mom to Matt, 1, and Andrew, 3; an animal-rescue volunteer; and a daily blogger. But Niebur, 35, is also a full-time cancer patient, and one night last fall her characteristic attitude of resolve and optimism failed her. After nearly six months of chemotherapy, the treatment’s side effects—which are cumulative—were brutal.
She was in constant pain, couldn’t sleep or eat, and had just developed a case of temporary nerve damage that rendered her unable to walk or even get out of bed without help. So while her husband, Curt, 35, and their little boys slept, Niebur did the only thing she could do to feel more in control of a terrible situation: She booted up her laptop, logged on to her blog, and wrote about what had happened earlier that night.
Because the meds weren’t taking away the pain, my husband lifted me into a hot, steaming bath (my legs still aren’t working) to relax the muscles. The pain dissipated a bit, and I began to feel better. Then, after the water cooled off, we added bubbles and a baby. I began to gently wash his back with soapy hands, and he looked up at me and giggled. I giggled back, briefly, and then, as he turned away to splash a bit, it struck me again. This is the baby we waited for. This is the last baby I’ll ever have. This is the baby I’m living for. And I began to cry. Great big gobs of tears, actually, and I turned on the water again so no one else in the house would hear it. I’m not good at talking about these feelings, you see, and I really still don’t want to talk about it, but, in truth, I am sad.
Six months earlier Niebur had been diagnosed with inflammatory breast cancer, or IBC, the deadliest form of the disease. The best hope for survival is early diagnosis combined with aggressive treatment: chemotherapy, followed by mastectomy, followed by radiation. It’s a devastating regimen that lasts for nearly a year, and one of the ways Niebur copes is by writing it all down—her research, her experiences, her fears, her hopes—and sharing it through her blog, Toddler Planet.
The First Hint of Trouble
For Niebur, the initial sign that something was wrong came after her youngest son was born in January 2007. It had taken some time for his older brother to get the hang of nursing, too, but weeks passed and still baby Matt rejected the right breast. Visits to the pediatrician and lactation specialist turned up no trouble with his latch or sucking reflex. He’s just a stubborn baby, the pediatrician finally decided—”And if you know me, that’s not so hard to believe,” Niebur laughs.
By May her right breast had swollen and the skin on it had thickened a little and developed an unusual dimpled texture, almost like the skin of an orange. The changes were subtle at first, and Niebur didn’t give them much thought. “Who would, when you’re busy breast-feeding and helping a newborn survive?” she asks. She’d never found a lump during her monthly self-exams, so she didn’t worry.
Then came a diagnosis of breast cancer—not Niebur’s but her mother-in-law’s. Like any good scientist, Niebur immediately began to research the disease and its treatments. After Googling “infiltrating ductile carcinoma,” her mother-in-law’s diagnosis, she came across a term she’d never heard before: inflammatory breast cancer. My heart sank, she wrote in her blog. There, staring me in the face, were symptoms like “thickness of the breast,” “dimpling,” “redness,” and “looks like an orange.” I looked down. And back up at the screen. And then it hit me: I should get myself checked out, too.
Facing the Worst
Within 10 days, Niebur had been diagnosed with IBC, a highly aggressive breast cancer that’s very different from other forms of the disease. About 85 percent of breast cancer patients have ductal carcinoma, which begins in the milk ducts and slowly infiltrates the surrounding tissue. By the time the cancer has formed a palpable lump, it has been growing for years. (That’s why doctors urge women older than 40 to get yearly mammograms, so breast tumors can be discovered before they’ve grown large enough to be detected by hand.)
But IBC rarely produces a lump. Instead, it grows rapidly in sheets of cells that quickly infect the whole breast. The inflammation marches across the surface of the skin in a way that’s visible to the naked eye, and there may be a constant itching or pain (either a dull ache or stabbing sensation) in the affected breast, as well as swollen lymph nodes on the neck or under the arm. In some cases, the earliest symptom is a bruise or a sore that looks like a bug bite but doesn’t go away.
Though IBC is more common in younger women than other forms of the disease, overall it’s very rare, affecting only 6,000 to 10,000 American women each year and accounting for only 1 percent to 5 percent of all breast cancers. Most ob-gyns and even many cancer specialists have never seen a case, so in women of childbearing age—like Niebur—it’s frequently misdiagnosed as mastitis, a common (and benign) complication of breast-feeding. Because IBC spreads so rapidly, misdiagnosis can be deadly. Of the 100,000 American women who suffer from it today, nearly half weren’t diagnosed until the disease had already metastasized. And when cancer spreads from its original site to other organs—such as the liver, lungs, bone, or brain—it’s too late for a cure. That’s one reason why the five-year survival rate is only around 40 percent—less than half that of other breast cancers.
When Niebur brought her symptoms to her ob-gyn, he immediately referred her to a cancer specialist who biopsied a section of her skin, as well as seven core samples. The next day Niebur learned that she had breast cancer—and the one of the worst kinds of all.
Treating IBC varies by whether the patient is pre- or post-menopausal, whether the cancer has already metastasized, and whether estrogen makes it grow more rapidly. But all IBC patients receive chemotherapy (though the specific drugs and timing may vary), possibly along with hormone therapy, to shrink the cancer. If an MRI indicates a surgeon can remove it all, the patient has a mastectomy followed by radiation. They will likely need further treatment in future years, however: Up to 70 percent of IBC patients suffer a recurrence in the opposite breast or elsewhere in the body if the cancer has reached the lymph nodes.
In addition to early diagnosis, the right treatment plan is crucial, says Massimo Cristofanilli, MD, an IBC researcher and co-director of the IBC clinic at the University of Texas M. D. Anderson Cancer Center. “Every patient with IBC should be going to a specialized center, because this disease requires care from teams that know exactly how it behaves,” Dr. Cristofanilli says. Patients who don’t live in a major research area may need to travel to find a doctor who can develop an appropriate treatment plan with the help of their local oncologists.
Raising Awareness—and Her Own Spirits
Susan Niebur was lucky. Thanks to her “stubborn” baby and her mother-in-law, she got her diagnosis early, before the cancer had metastasized, so she has the best possible shot at beating this deadly disease. Determined to help other young women, she began writing about the illness on Toddler Planet, a blog she started keeping when her first child began walking. She explained the symptoms of IBC and urged women to get checked out if they noticed any change in their breasts. “I was caught off guard by the fact that I’d never even heard of IBC and, here it was, trying to kill me,” Niebur says. “Spreading the word became very important to me.”
So far, dozens of women have had their breasts checked after reading Niebur’s blog. (“Thankfully, all but one have turned out to be negative,” she says.) But they come back for the wisdom and honesty they find at Toddler Planet, which gets viewed about 1,500 times a day. The blog has also become a critical tool in Niebur’s survival kit. After she was diagnosed, she wasn’t sure whom to talk to. “I didn’t want to burden my friends—they all have two or three young children of their own to worry about. I didn’t want to burden my family—my mother-in-law’s diagnosis needed everyone’s attention. I just wanted to talk it through, and the blog was a natural outlet for me,” she says. On the day she announced her diagnosis, she wrote, I will continue to post every day so I don’t slip into sadness over here. Help me stay focused and positive, OK? I will need you all.
In post after post, Niebur chronicled what it’s like to live with cancer and care for two small children at the same time. The details can be heart-wrenching, as in one post about 3-year-old Andrew: It breaks my heart that he tells me sometimes, “Me sad” or “Me sick.” Because he’s not sick. I am. And it makes him sad. But for every post that honestly names the fear and pain of cancer treatment, there’s another in which Niebur points out the beauty in her life—like the time she and Curt coped with a long wait for chemo by slow dancing in the cancer ward. She’s even able—on good days—to find the blessings in cancer itself: When I’m really down, I think, I could have been hit by a bus and died instantly. Instead, I was hit by the cancer bus and given a chance to fight for my life.
“I blog for me, for an honest record, and for that one woman who sees changes in her breast and is Googling what might be wrong,” Niebur says. “I hope I can help her, now or years from now. Hopefully, all this won’t be in vain.” Readers respond with encouragement, prayers, and silly jokes to take her mind off the effects of chemotherapy.
“If I’m up in the middle of the night and feel alone and sad about the cancer, I just log on and there are friends waiting for me,” Niebur says. “The blogosphere is saving my life.”
Niebur has a lot of practical help, as well. Curt, also a NASA scientist, works a flexible schedule that allows him to be home if needed, and one set of parents or the other—Curt’s mother has finished her own treatment and is doing well—has cared for the children while he accompanies Niebur to treatment. But the blog has been a unique source of help, Curt says. “Susan expected it to be just an outlet and perhaps a way she could alert a few other people to this disease. But it also provided something unexpected and wondrous. I hope everyone who reads it realizes just how precious their support is. Cancer is a lonely disease: You’re the only person in the chemo chair, and you’re losing your hair, feeling pain pierce your bones. But Susan knows she’s not alone, and that helps her every single day.”
Looking to the Future
Last Christmas Eve, after six grueling months of chemotherapy, Niebur got the news she had been hoping for: Her cancer had responded to the chemo, and it was now operable. To reduce her risk of recurrence, she opted to have a double mastectomy. After the surgery, followed by seven weeks of daily radiation, she would be cancer-free. An unbelievable lightness accompanies me these days, Niebur wrote on Toddler Planet. I’ve moved away from the scariest thoughts about cancer and am enjoying the present and looking to the future. Her readers responded joyfully: “I usually don’t comment. But this deserves a huge hallelujah!” wrote one. “I am crying I am so happy for you!” wrote another.
In the past few months Niebur has enjoyed things most people take for granted: Planting seeds. The forsythia bursting yellow. The trees filling out with leaves. In other words, beginning life anew. As she reminds her readers, Every day can be magical.