Survivorship statistics are encouraging, but you may be unaware of potential delayed side effects of the illness and its treatment. This is increasingly important as the number of long-term survivors increases. Currently, follow-up clinics exist primarily for survivors of childhood cancer.
Over the past several years the Institute of Medicine has published several reports on the status of survivorship research. These reports include: Childhood Cancer Survivorship: Improving Care and Quality of Life (2003); From Cancer Patient to Cancer Survivor: Lost in Transition (2005); and Cancer Care For the Whole Patient: Meeting Psychosocial Health Needs (2007).
These reports demonstrate that after a diagnosis of cancer there is an increased risk of a recurrence (reappearance of disease) or metastases (transmission to other sites in the body), or of a second primary tumor. There are also other increased risks that vary based on a particular diagnosis and treatment. Since its inception, NCCS has advocated for research and long-term follow-up for adult cancer survivors. As early as 1987, a leading oncologist in survivorship research, Dr. Patricia A. Ganz, wrote:
Familiarize yourself with the specifics of your treatment
Remain alert to the possibility of secondary medical effects
Plan to have regular follow-up visits for the rest of your life
These suggestions are as true today. There is now evidence that treatment may cause or contribute to long-term or subsequent physiologic changes as long as 5, 10, or 20 plus years later. This is not intended to frighten you, but rather to alert you to the potential problems so that you can be vigilant about your care.
Simply by aging, many of us experience these health problems. Organ damage, organ failure, premature infertility, premature aging, compromised immune system and a damaged endocrine system have been identified as some of the potential immediate, mid-range and long-term effects. These effects may contribute to chronic illness, incontinence, swelling, reproductive problems and psychological conditions.
The concept of symptom control and adequate pain management from the moment of diagnosis, rather than only at the end stages of disease, is important and empowering for cancer survivors. You can improve the quality of your life to the extent that you can alleviate and manage the side effects of your cancer and its treatment.
The most commonly used term to describe symptom management is palliation or palliative care. While many people associate these terms with end-of-life care, NCCS believes palliative care is essential from the moment of diagnosis through the balance of life.
What is Palliative Care?
In 2001, the National Cancer Policy Board adopted the World Health Organization (WHO) definition of palliative care in cancer “as active total care of patients whose disease is not responsive to curative treatment.” The Board issued a groundbreaking report – Improving Palliative Care for Cancer. The report went on to state that “palliative care focuses on addressing the control of pain and other symptoms, as well as psychological, social, and spiritual distress.” But perhaps most importantly it focused “on the importance of palliative care beginning at the time of a cancer diagnosis and increasing in amount and intensity throughout the course of a patient’s illness, until death.”
The report identified six major skill sets for total and complete palliative care:
Management of complications of treatment and the disease
Psychosocial care of patient and family, and
Care of the dying
Although palliative care is beginning earlier and moving into the mainstream of quality cancer care, you may have to be proactive in demanding it for yourself or for loved ones. Much of this care is not reimbursed adequately, which partially accounts for it being undervalued by treating professionals.
The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.
The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.
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NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.
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