Defining when a patient becomes a cancer “survivor” seems to vary depending on whom you ask. Some people say that this term can be applied after a patient has shown no evidence of disease for five years; others assert that survivor is a status achieved following the patient’s completion of all recommended treatments and surgeries. The National Coalition for Cancer Survivorship (NCCS) states: “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition.”
As a two-time cancer survivor and the Program Coordinator of the Johns Hopkins Breast Cancer Survivorship Program, I find this last definition to be most fitting as it encompasses the initial steps (regardless of how small) the patient has already taken following diagnosis. The NCCS definition also gives weight to the “co-survivor” who is often instrumental in providing support in the form of attending medical appointments, dressing wounds, changing drains, providing meals, assisting with transportation, being an active listener, and partaking in significant medical decisions.
Research indicates that as the Baby Boomers continue to age, the number of people who will be classified under the category of a cancer survivor will sharply increase. With improved treatments, earlier detection, more advanced treatments options (including new drugs and targeted therapies), increased education, and a decrease of treatment toxicities, many cancer patients will regain health and wellness and go on to live beyond their disease. After living through active treatment, tackling survivorship is often the next stage in a patient’s battle with cancer.
Although the advances in cancer care delivery and their direct treatment implications for patients are encouraging, there are still many areas of cancer care, such as survivorship, that are necessary to address. The reality is that the majority of patients will suffer some short- and long-term physical and psychological effects after completing treatment. These latent effects seem to vary depending on the type of cancer, treatments given, and the patients’ age and health status before diagnosis. Currently, there are no national databases to track side effects. In addition, most cancer patients will be diagnosed after the age of 65 and may already suffer from unrelated co-morbid conditions exacerbating cancer treatment side effects. Wellness activities such as stress reduction techniques, specific diet changes, or supplements are understudied, making it challenging for physicians to recommend to their patients these non-evidence-based practices. To complicate many of these issues, our fragmented U.S. healthcare system does not lend itself to seamless communication between a patient’s oncologist and his/her primary care provider making shared-care treatment over several of these lasting sequela challenging for everyone involved.
Cancer survivorship is a philosophy based on a holistic approach to wellness; practitioners and adherents are committed to addressing the short- and long-term oncology needs of the patient from diagnosis through the rest of the patient’s life. Assistance provided should include emotional, psychosocial, and medical needs for a patient who is: 1) living with cancer; 2) living through cancer; and 3) living beyond cancer. This includes the prevention of second malignancies, adequate surveillance, timely intervention, wellness activities, psychosocial support, and the coordination of medical care.
More about Breast Cancer Survivor Care
An oncologist told me I'd become a 'breast cancer survivor' when I died from other causes ;-). That's because Er + woman can reoccur long after big cancer-versaries. So I live daily with uncertainty, even after a bilateral-mastectomy. Surviving doesn't always mean 'thriving.'
The term 'survivor' confuses me. I was applauded as a survivor at a charity run the week of my diagnosis which felt strange. Patients who suffer other chronic conditions aren't called survivors before treatment. A by-pass patient isn't a heart disease survivor prior to surgery?!
And what about my friends who didn't survive? They ate raw food, took supplements and sought cutting edge treatment. They even had a positive attitude which I some times lack. At each funeral I wonder 'why me,' as in 'Why am I still here when they did MORE of the right things"?
Besides, Survivor is a word I associate with the Holocaust (still true in Europe) and with soldiers returning from the front. I'm not in the same camp with these people. Nor do I like the war-like image that's often applied to coping with cancer. My body produced the cancer so I'm not fighting myself but rather making the healthy parts even stronger. Shoring up my immune system with self care and love.
At the end of the day I wonder: "What CHOICE do I have but to learn how to survive"? To keep putting one foot in front of the other. To make the most out of each day without caving into self pity and nagging fears? Is this courage or rather just necessity?
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