Hello My Name Is Survivor
Several years ago, I attended a "Blood Cancer Day" co-sponsored by the Leukemia & Lymphoma Society and the University of Pennsylvania. Survivorship was the topic of the keynote address. I assumed the topic didn’t concern me since I was still in treatment for my myeloma and was not in a remission. I believed I wasn't a survivor just yet, although I hoped to be one in the future. In my mind, survivors had to be cancer-free. I was living with cancer, but was I surviving? This thought began to intrigue me.
By the end of that keynote address, I proudly called myself a myeloma survivor and was searching Google for a T-shirt that would let everyone else know that, too. In 1996, the National Coalition for Cancer Survivorship pioneered the definition of a cancer survivor as any person diagnosed with cancer, from the time of initial diagnosis until his or her death.1 According to this widely accepted definition, I was a SURVIVOR! Being called a survivor gave me an unexpected high. But, what was this thing they were calling "survivorship"?
Survivorship is the process of living with, through, and beyond cancer. According to the American Cancer Society, there are more than 15.5 million cancer survivors alive in the US. By 2026, the number of cancer survivors alive in the US will grow to more than 20 million. Cancer survivors are living longer, which is a great thing. Because of their extended longevity, cancer survivors now need to address healthcare issues that will not concern someone without a cancer diagnosis. These ongoing issues may be the result of long-term side effects from cancer and its treatment, medical and psychosocial late term effects, and the need for active surveillance for recurrence, cancer spread, and secondary cancers.
In 2005, the Institute of Medicine (IOM) published From Cancer Patient to Cancer Survivor-Lost in the Transition. In this report, the IOM concluded that, “Despite the increase in cancer survivors primary care physicians and other healthcare providers often are not extremely familiar with the consequences of cancer, and seldom receive explicit guidance from oncologists. Furthermore, the lack of clear evidence for what constitutes best practices in caring for patients with a history of cancer contributes to wide variation in care.”2
Because of this report, the IOM made a recommendation that cancer patients be given a survivorship care plan (SCP). Unfortunately, according to a 2014 study in the Journal of Clinical Oncology only about 5 % of oncologists are actually providing these plans to patients. This study was based on data from a national survey of 1,130 oncologists and 1,020 primary care physicians.3
Survivorship care plans (SCP)
Survivorship care plans are individualized plans that are given to a cancer patient that describe the patient's exact diagnosis, a summary of the patient’s treatment, and a list of recommendations for follow-up care. These recommendations provide guidelines for monitoring and maintaining health and addressing any ongoing concerns. SCPs outline what care cancer-related and non-cancer-related healthcare providers are responsible for providing. SCPs should be shared with the patient and the patient’s entire healthcare team.
Creating your individualized plan
Do you have a survivorship care plan? If not, don't despair. There are several good online resources to help you develop your own.
This July, I will celebrate 10 years of cancer survivorship. Although I never achieved a complete remission from my myeloma and still receive treatment, I am proud to call myself a cancer survivor. I will challenge anyone who believes otherwise. Using an online resource, I proactively created my own survivorship care plan. This plan allows me to actively engage in meaningful discussions with my healthcare team.
I have cancer, cancer doesn't have me. I am living life to its fullest and SURVIVING!
How long did it take to be properly diagnosed?