NEWS

Cancer Survivors Still Struggle to Get Adequate Follow-Up Care

Linda Wang

Improved methods for cancer diagnosis and treatment have contributed to decreases in cancer mortality for both adults and children. However, as success stories mount, so, too, do concerns that harsh treatments may leave lasting physical and psychological scars. Researchers are finding that while cancer survivors in general have a good quality of life, effects such as anxiety, developmental problems, organ damage, loss of fertility, and subsequent cancers are not uncommon.

"Many individuals are living lifetimes with a history of cancer, and the consequence of this is that we need to be monitoring them both for recurrence of their original tumor [and for] development of chronic or late effects of their treatments or disease," said Julia H. Rowland, Ph.D., director of the National Cancer Institute’s Office of Cancer Survivorship.



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Dr. Julia H. Rowland

 
However, researchers are discovering that a majority of cancer survivors are not receiving follow-up care. Studies suggest that a large proportion of childhood cancer survivors are not being followed up on a regular basis. Possible reasons include difficulty in locating cancer survivors and survivors’ unwillingness to seek follow-up care.

Preliminary findings from the Childhood Cancer Survivor Study, a National Institutes of Health-funded study of more than 12,000 childhood cancer survivors, suggest that more than half of respondents have not been seen by a physician in the previous 2 years for the evaluation of potential cancer-related problems.

Follow-Up Fallout

Survivors of adult cancers are even more prone to the follow-up fallout, said Ellen Stovall, executive director of the National Coalition for Cancer Survivorship, an advocacy group based in Maryland. Most childhood cancer survivors are cared for by clinics specializing in follow-up care, whereas adults are mainly cared for by a primary care physician who may not be trained to look for the long-term late effects of cancer.



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Ellen Stovall

 
To make matters worse, many late effects of adult cancer treatments remain to be discovered, said Patricia A. Ganz, M.D., director of the Division of Cancer Prevention and Control Research at the University of California at Los Angeles Jonsson Comprehensive Cancer Center.



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Dr. Patricia A. Ganz

 
In 2001, the National Institutes of Health funded 142 grants addressing survivorship issues, and among those were a number of projects studying the late effects of cancer treatments. Ganz noted that progress is being made but maintained that "we’re at the tip of the iceberg in terms of the data that we have."

More information about treatment-related effects could be useful in developing guidelines for follow-up care, said Rowland. For instance, a woman with a history of Hodgkin’s disease could go to her physician, who, with the appropriate guidelines, would know to screen the woman for breast cancer, a late effect of radiation therapy.

The American Society of Clinical Oncology has issued guidelines for the follow-up of breast and colorectal cancer. However, Rowland pointed out that "we do not have a well-established evidence base for follow-up care for any other tumor sites."

Effect of Targeted Therapies

While newer, more targeted therapies will reduce the potential for some late effects, said Rowland, "we are light years from being there." Indeed, therapies for childhood cancers have become more targeted; however, therapies for adult cancer have gotten more aggressive, Rowland pointed out. She noted that new support drugs allow patients to tolerate multidrug regimens and higher doses of therapy over shorter periods of time. The danger is that "we have no idea what the late consequences of [high-dose therapy] are," said Rowland. Nor do we know what the potential side effects of more targeted therapies will be, she added.

There are about 25 clinics nationwide specializing in the follow-up of children who have survived cancer. Some researchers have proposed doing the same for adult cancer survivors. However, said Wendy Hobbie, coordinator of the follow-up program at the Children’s Hospital of Philadelphia, "we, at this point, don’t even have enough follow-up programs to evaluate the pediatric population that we have, let alone following this population to adulthood."

Rowland said, "What we’re probably looking at is being able to educate primary care providers about what they should also be looking for if this person comes with a cancer history."

Hobbie said she encourages survivors to become knowledgeable about the nature of their diagnosis and treatment. She noted that many childhood cancer survivors become lost to follow-up when they reach young adulthood. These survivors often move away from home and change health care providers, who then may not know to look for possible late effects in their cancer patients.

"If we can arm the young adult with information, they are their best advocate," said Hobbie. Then, regardless of how many physicians they go to, they can help their physician recognize potential effects of treatment, she said.

However, a new challenge researchers are discovering is that many adult survivors of childhood cancers have limited knowledge about the nature of their cancer diagnosis and treatment.

In the April 10 issue of the Journal of the American Medical Association, Nina S. Kadan-Lottick, M.D., of the University of Minnesota School of Medicine, and her colleagues reported that of 635 childhood cancer survivors, 72% could accurately and precisely recall their diagnosis, while 19% could recall that they had a cancer but could not say which form they had. Only 15% of the participants had copies of their medical records.

The researchers noted that lack of knowledge about past treatment could prevent survivors from seeking follow-up care and from communicating necessary information to their health care providers.

What is needed may be cooperation on the part of researchers, doctors, and patients themselves. "There really does need to be this equal effort to evaluate long-term survivors and to help guide them through their journey of survivorship, because it really is uncharted territory, and we just know bits and pieces right now," said Hobbie.



             
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