|
WHAT IS A CANCER SURVIVOR?
There are three distinct populations of cancer survivors: 1. Adults; 2. Children 1-18; and
3. Adolescents and Young Adults 15-30.
1. Adult Survivors
What is a Survivor?
The term "cancer survivors" refers to those people who have been diagnosed with cancer and the people in their lives who are affected by the diagnosis, including family members, friends and caregivers. What it means to have survived cancer is very personal and defining “cancer survivor” may differ among individuals. Experts increasingly understand cancer as a chronic disease with life-long implications for care.
Because of advances in the early detection and treatment of cancer, individuals are living many years after a diagnosis. As of January 2004, there were approximately 10.8 million adult cancer survivors in the United States. Today, approximately 66% of adults diagnosed with cancer are expected to live at least 5 years after diagnosis.
During diagnosis, treatment, and post-treatment, cancer survivors face physical, emotional, social, spiritual, and financial issues. For example, because of genetic predispositions, common lifestyle factors, and the effects of cancer treatments, cancer survivors are at increased risk for certain health problems after diagnosis and treatment. In light of these concerns, there is a need to develop a well balanced program aimed at survivors of cancers at all level groups to prevent secondary disease and recurrence, and to improve survivors’ quality of life.
Risk Factors for Adult Survivors of Cancer
- Age is a primary risk factor for most cancers. Approximately 56% of all cancers are diagnosed among individuals aged 65 years or older.
- Smoking is a preventable risk factor for cancer recurrence and second cancers. Smoking also contributes to primary cancers.
- Obesity may be related to poorer survival for women diagnosed with breast cancer and to a poor prognosis following a prostate cancer diagnosis.
- Low-income men and women who have inadequate or no health insurance coverage are more likely to be diagnosed with cancer at later stages, when survival times are shorter.
Need for lifelong screening of all Cancer Survivors
Cancer survivors are at greater risk for recurrence and for developing second cancers, because of the effects of treatment, continued lifestyle behaviors, underlying genetics, or risk factors that contributed to the first cancer. There is a need for all cancer survivors at the end of treatment to have established with their medical team an appropriate schedule for screening, as well as the types of screening needed. Survivors also need to know who on their health care team will be responsible for monitoring this screening schedule long-term.
2. Childhood Cancer Survivors
Survival Rates for children with childhood cancers:
Advances in medical treatment over the last 35 years have led to improved outcomes for childhood cancer survivors:
- Cure rates, as measured by five-year survival, have increased to 78% (across all childhood cancers).
- Currently, there are approximately 300,000 people living in the United States who have a history of childhood cancer.
What issues affect childhood cancer survivorship?
Young cancer survivors face a wide range of opportunities and challenges. Factors that influence an individual’s survivorship experience can include:
1. age at time of diagnosis
2. type and severity of cancer and its treatment (surgery, chemotherapy, radiation) as well as treatment site
3. duration of survival
4. inancial and geographic access to follow-up care
5. information needs
6. parental and/or self-employment and insurance status (frequently interconnected)
7. cultural, spiritual, literacy and language differences
As many as two-thirds of childhood cancer survivors encounter a medical problem or late effect related to their original cancer or its treatment. Late effects can occur months or even years after treatment has been completed. They vary widely and can be psychological, cognitive or physical.
Specific needs of survivors of childhood cancers that are not being well met include:
1. Access to comprehensive follow-up care
2. Assistance during re-entry into the school system, including accommodations for special learning needs or disabilities
3. Connecting patients and their families with psychosocial services to deal with anxiety, depression, stress, and post-traumatic stress disorder
4. Support for obtaining health and life insurance as they enter the working world
5. Transitioning from pediatric to adult care and from oncology to generalized health care for long-term follow up
6. Detailed information on their cancer treatment that can be carried with them and communicated to their current and future health providers
What survivors and their families need for long-term survivorship
Some specific recommendations from the experts on survivors of childhood cancers include:
1. Providing survivors post-treatment, with full documentation of the care they received, information about their risks of late effects, written recommendations for follow-up care, and guidance about resources to obtain follow-up
2. Offering information about laws and regulations that may protect survivors in terms of employment, insurance, assets, and school accommodations
3. Providing psychosocial assistance and support during and after treatment for survivors, families and caregivers
4. Give patients information about the risks of infertility related to various treatments and options for preserving their ability to have children prior to treatment
5. Help family members and other caregivers with better training and support
3. Young Adults Survivor
Issues which young adults with cancer face
1. Survival rates have not improved-While children and older adults have seen major increases in survival rates, researchers say, little or no improvement has been made since 1975 for patients between 15 and 35. There is a movement to bridge the gap. There is a need for young adult cancer centers, focusing on the biological and social differences in this age group.
2. A major killer-Cancer is the leading cause of non-accidental death for young adults in the United States. Survival rates for cancer patients ages 25 to 35 actually have dropped in the last three decades, despite the fact that in that age range, the disease is three times as common as pediatric cancer. Survival rates for this age group have hit a plateau, while children and older adults continue to see improvements. There is a lack of funding and research for the diseases affecting this age bracket: Hodgkin's disease, lymphoma, leukemia, bone sarcomas and germ cell cancers.
3. Delayed diagnosis-young adults tend to have delayed or missed diagnosis because of their lifestyles and how the symptoms are misread or misunderstood to be caused by some other issues like strain from exercise or lifestyle activities.
4. Don't quite fit in-Researchers say young adult cancer patients are treated on tried-and-true pediatric or adult protocols, rather than using treatment plans designed specifically for their disease. A 5-year-old, 25-year-old, and 65-year-old can all have leukemia, doctors say, but the diseases look very different under the microscope. Teenagers and young adults treated as if they were older adults don't fare as well as they do under pediatric protocols. Recent figures on young adults with acute lymphoblastic leukemia show a 64% five-year survival rate with pediatric medicine, compared with 38% under adult treatments. In the United States most people are switched from pediatric to adult doctors at age 15, even though pediatric diseases can strike people well into their 20s. But hardly any physicians specialize in this age group. But young adults are hesitant to go to pediatric doctors, fearing they will be treated like children and put in hospital wards with Disney characters on the walls.
5. Lifestyle choices-Doctors say lifestyle choices and a lack of health insurance have played a part in the stagnant survival rates. Busy schedules, denial of symptoms and financial woes all lead to delayed diagnosis, which doctors say has a major impact on survivability. Young adults are at an age where they think they're invincible and for that reason the most common symptoms – back pain or bony pain – they just explain away. The most underinsured of all age groups, young adults often are hesitant to make doctors' appointments. And once they get a diagnosis, doctors say, they are the least obedient of patients, not taking medicine or skipping appointments.
6. Age specific emotional needs-there is a need to combat the social and psychological problems specific to young adults. Between new careers, school, fledgling relationships and starting a family, emotional support is as important as medicine. There is a common belief that young adults with cancer feel isolated, and very much like they're the only ones going through this.
7. Recurring problems-Recurring problems are common in young cancer patients. Young adult patients have the highest risk of early mortality from second cancers and heart and lung problems – a result of radiation and chemotherapy in developing bodies. Young adults survivors fall through the cracks because they are treated in so many venues, and by people of all different medical backgrounds, but they need to be screened by people who know about the past treatments and survivorship issues they may have.
National Recommendations for Treating Young Adults
To address the overall problem, the NCI conducted an evaluation in 2005 to 2006 of the current status of a cancer diagnosis in the United States between age 15 to 40 years. Named the Adolescent and Young Adult Oncology Program Review Group and co-funded by the Lance Armstrong Foundation, the review resulted in 5 categories of executive recommendations:
1. Identification of the characteristics that distinguish the unique cancer burden in the older adolescent and young adult cancer oncology patient
2. Education, training, and communication to improve awareness, prevention, access,and quality cancer care to older adolescents and young adults
3. Creation of tools to study the older adolescent and young adult cancer problem;
4. Ensuring excellence in service delivery across the cancer control continuum (ie, prevention, screening, diagnosis, treatment, survivorship, and end of life)
5. Strengthening and promoting advocacy and support of the older adolescent and young adult cancer patient.
In addition, the report contains numerous specific recommendations in each of the aforementioned categories, including a set of actions to improve the clinical trial deficit. Reasons other than poor clinical trial participation, such as undescribed differences in biology, delays in diagnosis, poor compliance or intolerance of therapy, and treatment by physicians less familiar with their diseases and psychosocial needs, may contribute to this outcome disparity, as well, and need to be studied.
|