For breast cancer survivors, a long road back to 'normal'
By Doug Kapustin, for USA TODAY
Despite a lack of support: Elissa Bantug, who survived breast cancer, was still able to have daughter Isabela, now 2, after treatment.
For Elissa Bantug, one of the scariest moments of her breast cancer treatment was the day it ended.
"I thought finishing treatment was going to be a celebration," says Bantug, 29, who was diagnosed at 23 as a single mother. "When I had radiation after my lumpectomy, I was counting down treatments like a child counting down the number of days of school."
When daily therapy ended, however, Bantug felt cast adrift. For the first time in months, no one would be monitoring her for signs of a relapse. During active treatment, "every day, there was somebody examining me, and every day, the nurses were asking about side effects," Bantug says. "When I asked my oncologist 'When do I see you next?' he said, 'You don't.' He said, 'Have a nice life.'"
Like many cancer survivors, Bantug had questions about staying healthy and recovering from toxic therapies that often leave women infertile. When she returned to her primary-care doctor for advice on preventing a recurrence, "he was really clueless. He said, 'Well, what did your oncologist say?'"
But it was hard to return to normal life, she says. Treatment left her in pain, exhausted, unable to sleep, depressed and anxious; it took 18 months to "really feel whole again."
Two-thirds of cancer survivors have trouble sleeping, even two years after treatment, found a study presented last year at a meeting of the American Society of Clinical Oncology. Up to 30% of breast cancer survivors suffer from persistent fatigue, says Julienne Bower, an associate professor at UCLA. Many also suffer from "chemo brain," a common term for post-cancer memory problems.
"We do a really good job of removing the disease but are not really good at getting people well," says Bantug, who now coordinates the Johns Hopkins Breast Cancer Survivorship Program in Baltimore, part of a national effort to address cancer survivors' long-term needs. The American College of Surgeons now requires accredited hospitals to provide follow-up care plans and make rehab available.
Distressed by 'inability to function'
Rhode Island recently announced it will work with a company called Oncology Rehab Partners to provide rehab to patients; it is the first statewide program of its kind.
"It's not OK to just tell patients they have accept a new normal," says Julie Silver, a survivor and assistant professor at Harvard Medical School who started the company. "They should not have to live with more pain and disability than they need to." Patients treated for head and neck cancer may need speech and swallowing therapy, for example, she says.
A 2008 study in the Journal of Clinical Oncology found that 90% of women with metastatic breast cancer could benefit from rehab, but only 30% got it. "Study after study shows that cancer survivors are distressed not because of the diagnosis, but because of their inability to function," Silver says.
And while almost all breast cancer patients would like a care plan, when they are discharged, only 10% received one, found a new survey of 1,000 breast cancer survivors from the Cancer Support Community. Nearly 90% reported a social, physical or emotional issue that posed a moderate to very severe problem. The results show that doctors need to begin screening and monitoring patients for these problems at diagnosis, says Kim Thiboldeaux, the Cancer Support Community's president.
Silver notes that cancer patients have unique needs for rehab. Unlike someone who has a heart atttack and arrives at the hospital near death, cancer patients are often diagnosed when they still feel quite healthy. Treatment, however, can be incapacitating.
"I actually felt great going into treatment," says Silver, who was diagnosed at age 38. After surgery and chemotherapy, Silver says she was in pain and "sicker than I had ever been. I was done, and it was like, 'OK, you're ready to go back to work.' There was no way I was ready to go back to work."
Studying immunity, stress
Researchers don't know why such problems are so common. Chemo may cause fatigue by damaging heart muscle or memory problems by killing stem cells in the brain, says Robert Weinberg of MIT.
New research suggests survivors who suffer from fatigue are more likely than others to have immune abnormalities, Bower says. It's possible their immune systems kicked into overdrive during radiation and chemo but never went back to normal.
"Something got out of whack during breast cancer treatment, so their immune system doesn't reregulate," Bower says.
Scientists are studying a variety of possible treatments, from drugs that selectively turn off inflammation, to yoga and tai chi, which may influence the immune system by relieving stress. Cancer survivors who took a four-week yoga class were twice as likely as others to say their sleep improved.
Bantug says she has faced her worst fears about life after cancer. One year after she finished treatment, she found a new lump in her breast and had a double mastectomy.
Yet she calls herself lucky. After chemo, she worried she couldn't have another child; today, she is married and has two girls, one 13, born before cancer, another age 2, born after.
"I feel great," says Bantug, who has begun competing in triathlons. "It took a long time to get here, though."
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