An Uncomfortable Silence
When she was 37, my friend Jeanne Giles Hackney was diagnosed with breast cancer. She went through an aggressive course of chemotherapy that made her so sick it almost killed her. Three years later, Jeanne looks as healthy and strong as ever. But she is aware that the cancer could have slipped undetected into her liver, her bones, her lungs, her brain. Even now, a tumor of less than a centimeter, the size of a pea, could be growing. Over the years, others could pop up, increasing in size, pressing against something vital. Like most women who have had breast cancer, Jeanne came to a harsh realization when she finished her treatments. Of course, there are the usual "how am I doing?" visits to her doctor, as well as regular mammograms. But what should a woman who has had breast cancer do when her treatment is over? A period in which she felt she was taking an active role in her own recovery has suddenly ended, and she generally finds herself in a sort of limbo. Even for the many who take drugs such as tamoxifen or Herceptin, a kind of silence descends. And they wait.
"I remember sitting in my doctor’s office," Jeanne says. "I asked, ‘The likelihood that I’ll have a local recurrence is extremely slim, correct?’"
Her doctor said yes.
"So what’s the obsession with the breast? Are you going to be checking my liver?"
"Yearly scans? Anything?"
Breast cancer patients who have four or more positive lymph nodes may be at the greatest risk for having the cancer travel to the brain. But even they are offered no follow-up screening unless they have symptoms.
As part of her practice, Rosseau has removed brain tumors from many of these women. But it wasn’t the surgery that brought this issue to her attention. "The scope of the problem is such that we all know someone who has had breast cancer," she says. "It seems that every week I’m hearing about someone whom I know personally — friends, family, neighbors."
When friends of a doctor fall ill, they naturally turn to him or her for advice. They want to know whether the cancer is really gone. They want to know what’s next. Rosseau couldn’t find an answer. "I was alarmed to find that we don’t really have a standard screening protocol," she says. "We just don’t know."
In fact, not screening for metastases until symptoms appear is considered the standard of care. "It’s insane," Rosseau says. "If a patient has a single, nonsymptomatic brain metastasis from breast cancer, wouldn’t you think she’d like to know about it before she has a headache or a seizure?"
There was a time when waiting for symptoms to appear may have made sense, because there really was no way to detect or treat those small, early metastases. Now, technologies such MRI, which can easily detect even minuscule tumors, and stereotactic radiosurgery (SRS), which can treat those tumors — even in the brain — without surgery, are readily available. Indeed, the medical centers that have spent big money on these screening and SRS devices need to pay for the new technology by promoting their use. And in most cases, insurance companies seem willing to cover the cost.
Rosseau recently won a $65,000 grant from the privately funded Chicago Institute of Neurosurgery andNeuroresearch Foundation to establish a trial screening program — as far as she knows, the first of its kind — for women who have had breast cancer. "I’m looking at something that I can treat," she says. "I want to know who’s at risk for brain metastasis. In the era when every brain metastasis had to be treated by craniotomy — and if they were multiple, then you were looking at multiple craniotomies — it made sense to kind of close your eyes and hope for the best. But it doesn’t anymore, because we have a very good technology now."