Writing a Roadmap to the Future for Cancer Survivors

• Cancer • Jun 05, 06

Christina Bigelow knows she needs to keep her heart healthy and avoid smoking and drinking. It’s more important for her than it is for a typical 19-year-old.

After surviving cancer twice, Bigelow now works hard to monitor for or prevent a third round with the disease.

“The second cancer was actually thought to be caused by the treatment of the first cancer, so because I’ve had two primary cancers, they’re kind of worried about a third one starting from the treatment of the second one,” says Bigelow, who was 9 when she was diagnosed with Hodgkin’s lymphoma. Four years later, at age 13, she was diagnosed with Ewing’s sarcoma, a type of bone cancer.

Bigelow is now cancer-free but not free of cancer. Because of the aggressive treatments used to treat and cure childhood cancers, long-term or late-occurring side effects are common for cancer survivors.

Cancer treatment can impact a child long-term in one of three ways:

Psychological and emotional adjustments. The effects of cancer treatment, including the emotional impact, can affect a child’s well-being. Often that does not surface until adolescence.
Growth and development problems. Certain treatments can stunt a child’s growth or cause problems with weight gain or bone development.
Organ toxicities. Specific drugs may cause some damage to organs, including the heart, lungs, liver and kidneys.

“Most of those issues can be relatively minimal. If you know about them ahead of time, you can actually help the child to make healthy choices as he or she gets older to reduce the chance of a long-term serious complication,” says Valerie Castle, M.D., Ravitz Foundation Professor of Pediatrics of Communicable Diseases and chair of pediatrics at the University of Michigan Medical School.

“I think every patient who’s been treated for cancer needs a roadmap. First and foremost, a patient needs to have a very clear description of the therapies he or she was given, and any substantial complications or interventions that were done in addition to the cancer care at the time of treatment,” says Castle, who is also director of the Long Term Follow Up Clinic at the U-M Comprehensive Cancer Center.

For Bigelow, that has meant a focus on exercising to keep her heart healthy, as well as annual checks at the Long Term Follow Up Clinic to evaluate her risk factors.

The clinic is designed to help patients transition from the acute care of treating the cancer to a long-term process that looks at what happens to individuals treated for cancer. As more children survive childhood cancers – currently as many as 300,000 people in the United States are childhood cancer survivors – doctors are able to predict issues that will come up, based on the specific treatment.

A report issued in Nov. 2005 found that cancer survivors were often falling through the cracks. Their primary care physicians are not familiar with the long-term consequences of cancer and seldom receive guidance from oncologists. The report, issued by the Institute of Medicine, recommended a “survivorship care plan” for long-term care.

At U-M, when a patient is referred to the Long Term Follow Up Clinic, care providers spend the first evaluation reviewing the original diagnosis and treatment. They summarize all treatment information into a document that covers anything a medical professional would need to know about the child’s treatment. From there, the care team develops a roadmap of standard tests and follow-ups that should occur each year.

“A roadmap and an outline of both the therapy and what we know to be potential risks that may occur down the road is really part of giving comprehensive care, and more importantly, of empowering the patient to know what the future might potentially hold and allowing us to have a template upon which we hold these discussions,” Castle says.

“You need to be an informed consumer. You need to be informed of both what you were treated for in the past, as well as take every opportunity to gain information going forward,” she says.

Christina Bigelow says she is free of cancer and “doing great.” She is finishing her second year of nursing school and has chosen her career path because of her experiences at the hospital.

“I plan on going into oncology,” Bigelow says. “I saw hands-on the kind of care and compassion the nurses gave me and how much they impacted my treatment. I hope to spread the kind of compassion that I saw when I was in treatment to maybe bring a little hope to others.”

Creating your own roadmap
Cancer survivors should ask the following questions after completing their treatment:

What treatments and drugs have I been given?
Do I need to seek follow-up care?
Will I get cancer again?
What should I do to maintain my health and well-being?
Will I feel different physically?
Will I have trouble getting health insurance or keeping a job?
Are there support groups I can turn to?
Who on the cancer care team will monitor my care?

Cancer Survivors’ Day
National Cancer Survivors’ Day is held annually in hundreds of communities throughout the world. Typically held the first Sunday in June, the day is meant to show that life after a cancer diagnosis can be a reality.

University of Michigan Health System

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