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Just before her 13th birthday, Caroline Hale learned she had a cancerous tumor wrapped around her spine. It was B-cell non-Hodgkin's lymphoma. Two years of treatments ended, but the powerful drugs weakened her bones and Caroline had to have double-hip surgery to reinforce both of her hip bones. The now 19-year-old is beginning a new life on her own at college, but her cancer journey is never far from her mind.
Cancer leaves much more than visible scars for patients to learn to live with and the issues are broad, ranging from side effects to insurance and employment difficulties, and much more. Only in recent years have these kinds of issues come to gain attention, perhaps because more patients are now living with cancer, rather than dying from the disease.
Some experts say cancer has become more of a chronic disease. When it comes to treating certain cancers, they can be managed, much like diabetes or high blood pressure. For this reason, experts at Vanderbilt-Ingram and across the country are trying to produce a single document, a roadmap of sorts, for cancer patients to be given once treatment is over. What most patients want to know when their treatments are over is, what now?
Cancer has robbed Hughes of some simple things many people take for granted. She survived throat and tongue cancer, but her cancer journey, like that of most survivors, will never really be over. "I didn't think I'd ever be normal again. You learn you will never be yourself again; you're a new person with a new life."
For five months after surgery Apolinsky was also left in silence. Surgeons had bruised her vocal chords and she couldn't speak, perhaps at the time when she needed to voice her fears and concerns the most. That was just over 10 years ago, but the memories are still fresh, and the journey is not over.
Fuson said he has learned life now involves much more than a cancer diagnosis. "I have prescription cases for meds in the morning and evening," said Fuson. "We are not just cancer patients. We are whole people, and we deal with lots of other things than just the cancer," he added. For example the pain medication Dan takes causes constipation, so he takes a laxative. The hormone treatments he's on cut off the testosterone his body would normally make, so he takes calcium to prevent bone loss. "This causes that and that causes this," said Fuson. It's enough to make a healthy mind dizzy.
And even at her young age, Hale has a new awareness in life. "I'm aware of all of my aches and pains," she said. "I can honestly say that I've never fully let go, because I've spent so much of the past four years in the hospital."
Survivorship Roadmap
There are nearly 10 million cancer survivors in the United States today. Treating the disease across cancer types has seen huge successes, with options now available to target tumors and spare healthy tissue, with personalized treatments to fight cancers on an individual basis. "There will be a day when DNA is examined and people are told what they are at an increased risk for, the treatment recommended based on their genetic profile, and what side effects they can expect and how to tailor treatment for that," said Jim Whitlock, M.D., a cancer physician with the Vanderbilt Childhood Cancer Program.
Because some cancers have moved into a manageable stage and require extensive long-term follow up, Whitlock said he tends to shy away from using the word cure. "It's not a light switch you turn on or off. The magic number is about five years after treatment. People want to know when they can quit worrying, but you really should never quit worrying. It's always going to be with you, so you have to be attuned to the baggage that comes with that. It's the price you pay," explained Whitlock.
But a new roadmap of sorts, a single
document for cancer patients to be given once treatment is over, is in the works to help patients face a new life after cancer and deal with the baggage they're left to carry. Patricia Ganz, M.D., director of Cancer Prevention and Control Research at the Jonsson Cancer Center at the University of California in Los Angeles, is a
recognized expert in studying quality of life and late effects issues facing cancer patients. She participated in the landmark report published by the Institute of Medicine and the American Society of Clinical Oncology, "From Cancer Patient to Cancer Survivor, Lost in Transition."
Ganz said cancer providers don't have some kind of formalized document or way to deal with people after treatment. "Patients want to know what is going to happen now," she said. "It's something they should expect – to be given information on what the next steps are, and it also needs to be communicated to other physicians caring for them," added Ganz. "Patients and their physicians could benefit from some synthetic or synoptic document that says what you've been through, what to expect, and what tests to follow up with. And it needs to be condensed, so not a stack of records."
David Johnson, M.D., former President of the American Society of Clinical Oncology, and deputy director of Vanderbilt-Ingram, is an expert in treating breast and lung cancer. He's also a cancer survivor, himself, and an advocate of a treatment summary for survivors. "Until recently, not much attention was paid to survivors." said Johnson. "We now recognize that survivors need chronic care, too. Much of that care needs to come from his or her primary care provider, but primary care providers have little knowledge of what that entails," Johnson added.
The idea of creating a centralized document has taken off and many institutions are already working to develop what is being called a "Survivorship Roadmap," to address the needs of survivors. Anne Washburn, M.P.H., associate director of Vanderbilt-Ingram's Office of Patient and Community Education, said they are currently working on such a care plan to offer patients. "They'll be given a plan once they are done with treatment for whoever follows them. Their drugs and treatments they were given will be outlined, areas of potential high risk will be noted, ideas to help patients maintain a healthy lifestyle, long-term side effects issues, how often you should get evaluated, tests and screening," said Washburn, as well as community resources to help survivors cope with these issues.
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