When Nicole Malato, 34, was diagnosed with cancer of both breasts in May, she wondered not just about how quickly her surgeon could remove the tumors, but also what subsequent chemotherapy, radiation and hormone-blocking drugs would do to her heart, her bones and her brain decades from now.
As the mother of a 2-year-old boy, her goal was "to see him graduate," she said.
"Being diagnosed with cancer at 34 is very different from being 60. It's three times the life ahead of you," said Malato, a human resources manager from Toms River, N.J., whose recent chemotherapy sessions have produced transient brain fog and profound fatigue, the most commonly reported symptom among cancer patients.
"When you're going through something as intense as chemotherapy, you can't help but wonder what it's doing to your body besides killing cancer cells."
From the time she learned the lumps she felt were cancerous, Malato opted for a double-mastectomy. "I said, 'Being young, let's be as aggressive as we can get.'"
But she also made sure her doctors knew she was thinking about the long-term physical, psychological and social consequences of her cancer and her treatment, and the risk of recurrence. She recalled conversations in which she asked them, "How do I get to be 70 or 80?"
The so-called survivorship movement, with its focus on long-term treatment effects and helping patients' maintain a good quality of the life by addressing their fatigue, sexuality and stress, is an outgrowth of people living longer with cancer and after cancer treatment. Malato was fortunate; she found understanding doctors, joined support groups providing camaraderie and some needed perspective and poured her feelings into a blog, which also has kept friends and relatives in the treatment loop.
But for many U.S. cancer patients, survivorship issues have yet to be fully incorporated into their care, according to a report based on 1,043 breast cancer survivors' experiences with the disease. The latest Breast Cancer M.A.P. (Mind Affects the Physical) Project survey from the nonprofit Cancer Support Community uses a non-representative sample of breast cancer patients, but nevertheless offers a window into the unmet needs of the nation's 2.5 million breast cancer survivors, including younger patients such as Malato, who might be facing decades of treatment.
Doctors aren't screening cancer patients for signs of emotional and social distress, despite patients' frequent anxiety or depression about their diagnosis, treatments and ability to cope. Nor are they discussing the long-term effects of treatment, said Joanne S. Buzaglo, senior director of the Cancer Support Community's Research and Training Institute in Philadelphia.
She said the survey also found that despite the Institute of Medicine's recommending in 2005 that all cancer patients receive a survivorship care plan that summarizes their treatment and informs them about needed future screenings, conditions for which they're at risk and recommendations about diet, exercise and finding social and emotional support, only 10 percent of the survey respondents had such a plan, "although practically all of them would have liked one."
Survivorship considerations begin the moment you get diagnosed," said Dr. Mary L. Hardy, medical director of the Simms/Mann UCLA Integrative Oncology Program in Los Angeles. "From the very minute you hear those three horrible words, 'You have cancer,' you should start being empowered, because an empowered patient is much more likely to be a successful patient."
Hardy said the Society of Integrative Oncology, the academic group for physicians like her who combine traditional and non-traditional approaches to cancer care, invites patients to its conference to incorporate patients' perspectives into treatment. "They have as much as a vested interest as we do," she said. "It becomes a very fruitful way to have discussions about what to do and how to do it."
Cancer doctors need to let their patients make choices about what's important to them, whether it's preserving their hair or preserving their fertility, Hardy said. In the past, she said, "the oncologists were saying, 'We're saving your life. What's the problem?" while bald patients would be saying, 'I'm devastated. I don't look like myself.'"
Today they can ask to wear "cool caps" during chemotherapy to reduce hair loss. Those patients who want to preserve their ability to give birth can arrange to have their eggs preserved, or fertilized embryos saved. "Whether that's successful or not, it mitigates your grief to know you did everything you could," Hardy said.
Hardy said she's especially attentive to preserving lean body mass in breast cancer patients because once they lose it, it's hard to get back. "I have them eat more protein and continue to exercise during treatment," she said.
The combination of dietary changes and exercise helps with energy and stamina, reduces nausea and lessens "the likelihood of one of the nasty side effects of breast cancer treatment, which is persistent fatigue, which can last years after treatment," Hardy said. "I start preparing to make that less likely to happen at whatever stage they come in. I'm thinking, 'What do I need to do today, what can I do to make the survival less difficult and more likely to be a long and happy one?'"
LiveSTRONG and the American Society of Clinical Oncology can help patients develop their own survivorship care plans. Information about the Cancer Support Community's signature survivorship program, Cancer Transitions, is available through firstname.lastname@example.org.