The National Coalition for Cancer Survivorship (NCCS) responded today to the latest Institute of Medicine (IOM) report addressing adult cancer survivorship with a plea to cancer survivors to take action in their own post-treatment health care. The IOM report, From Cancer Patient to Cancer Survivor: Lost in Transition, confirms that there is no system of post-treatment care for cancer survivors in the United States and that people are suffering as a result.
Today there are more than 10 million people living with cancer, versus only 3 million in 1971. While people with cancer are living longer, they are not receiving the follow-up care they need. Cancer survivors are at a greater risk of recurrence or developing new cancers, often suffer side effects from their treatment, and may have emotional and social issues -- all of which require quality follow-up care.
Ellen Stovall, a 33-year Hodgkin's survivor, co-editor of the IOM adult cancer survivorship report, states, "By exposing a glaring gap in care, this report provides cancer survivors, policy makers, federal agencies, health care professionals and advocacy groups like NCCS the evidence needed to effectively change and improve the quality of cancer care in the United States."
Cancer survivors need to educate themselves about their disease, treatments and potential side effects in order to advocate for themselves. To gain more ownership of their health care, NCCS recommends that cancer survivors act upon the following measures:
1. Request a Cancer Care Summary and Survivorship Care Plan -- Upon completing treatment request a formal consultation with your doctor and ask him/her for a Cancer Care Summary (a summary of your diagnosis and treatment) and a Survivorship Care Plan (a plan for follow-up care after primary cancer treatment).
2. Familiarize Yourself with Local Resources to Address Social and Emotional Issues -- Many survivors face emotional stress, employment discrimination and inadequate access to health insurance. But local community organizations offer counseling and guidance to help cancer survivors overcome these obstacles. It is important that you familiarize yourself with these resources, so you can ask for help when needed.
3. Take Action -- Being a proactive, educated self-advocate means feeling comfortable communicating your post-treatment needs, so that you can improve the quality of your life and the ongoing health care you receive. Beyond advocating for your own care, you can advocate for others in your local community and at the federal level to ensure that all cancer survivors are receiving quality cancer care.