More than 10 million Americans are living as cancer survivors. And many of them, after active treatment, fall into a kind of black hole marked by lack of planning, little knowledge of increased health risks from both cancer and its treatment, and general confusion about what may come next, according to an Institute of Medicine report released Monday morning at the National Press Club..
The report, "From Cancer Patient to Cancer Survivor: Lost in Transition," warns of the toll taken by both cancer and its treatment — "on health, functioning, sense of security and well-being." It says that "long-lasting effects of treatment may be apparent shortly after its completion or arise years later. Personal relationships change, and adaptations to routines and work may be needed. Importantly, the survivor's health care is forever altered."
The report focuses on survivors of adult cancer during the phase of care right after primary treatment. The institute looked at childhood cancer survivors' needs in 2003. It does not deal with people who have ongoing treatment for cancer as a more chronic disease, although it is relevant to them as well, says Ellen Stovall, report co-editor and vice chairwoman of the IOM committee that released it
The report's main message, Stovall says, is, "There is no system of follow-up care for cancer survivors in this health-care system. Some people have used metaphors like falling off a cliff."
One problem is that "treatments for cancers themselves are toxic. They poison cancer, but they also affect other tissues, other organs . . . the report illustrates quite graphically the organ failure (one) can experience." But doctors who treat active cancer may not look beyond that treatment and patients don't know where to look, she says.
Some are relatively unaffected later by their experience with cancer, the report says. But others have permanent and disabling symptoms that range from mental distress to sexual dysfunction, infertility, impaired organ function, cosmetic changes, limitations in mobility, communication and cognition, among others.
Even simple messages like telling someone who has had lung cancer to stop smoking or someone with melanoma to use sunscreen may not be delivered. "We're really saying it is time to pay attention to this. People are living longer post-treatment, but not necessarily living without complications," she says.
Stovall knows firsthand the challenges of being a cancer survivor. She had her first bout 33 years ago at age 24, when she was diagnosed with Hodgkin's lymphoma at an advanced stage and given little hope. The cancer recurred almost 12 years later. She is now president and CEO of the National Coalition for Cancer Survivorship, which has a number of tools for cancer survivors at www.canceradvocacy.
org.
A lot could be done to avoid, minimize or halt late effects of cancer, the report notes, but that requires increased awareness of the potential problems and some planning in terms of both future health care and policies to allow access to psychosocial services, fair employment practices and health insurance.
The lack of planning and information sharing isn't because doctors don't want to do it, she says. "Neither patient nor doctor know the next step to take."
Among the report's 10 recommendations:
Dealing with cancer survivorship as a distinct phase that requires appropriate care.
Patients completing primary treatment should be given a complete care summary and follow-up plan that is clearly explained. That would include appropriate follow-up screenings, what treatments were given, preventive practices and more.
Health providers should develop evidence-based clinical practice guidelines, assessments and screening to help identify and manage late effects of cancer and treatment.
Adverse effects on employment should be eliminated, while supporting survivors who have both long- and short-term limitations so they can work.
Federal and state policymakers need to make sure all cancer survivors have access to adequate and affordable health insurance. And insurers and payers should treat survivorship care "as an essential part of cancer care" and facilitate coverage for evidence-based aspects of care.
The report also calls for more research into survivorship and recommends pilot projects that could tackle the issues that come up for survivors.
"There are 10 million-plus walking among us who had a devastating diagnosis of cancer but are going on to live life with great resiliency and hope," Stovall says. Now they want caregivers and physicians to not only extend their lives "but make those lives better."
E-mail: lois@desnews.com