What Does "Survivorship" Mean?
The National Cancer Institute booklet uses the term “cancer survivor” to include “anyone who has been diagnosed with cancer, from the time of diagnosis through the rest of his or her life. Family members, friends, and caregivers are also part of the survivorship experience. You may not like the word, or you may feel that it does not apply to you, but the word “survivor” helps many people think about embracing their lives beyond their illness.”
National Coalition for Cancer Survivorship (NCCS)
“In 1986, the founders of NCCS [National Coalition of Cancer Survivorship] saw a need for language that truly told the story of life after a cancer diagnosis. At the time, there were a growing number of people living beyond their cancer diagnosis and treatment. Many of them were experiencing an array of health issues related to their treatment, as well as late and long-term effects. They also faced psychological, financial, emotional, spiritual, and social challenges. The phrase “cancer survivorship” was created to describe this broad experience on the cancer continuum — living with, through, and beyond a cancer diagnosis…. Many continue to struggle with how to define “survivor,” or whether to use it at all. We recognize that the term “cancer survivor” may be seen differently by people based on their own experiences.”
After Treatment Ends…
While it is normal to look forward to the day when chemotherapy ends and life goes back to normal, it can often be a bumpy time of transition and readjustment. During surgery and chemo when the focus is on survival, your healthcare team, friends and family are generally right there for you. Once your treatment ends, however, the focus dissipates while the trauma and grief of the experience may come forward to finally be processed. This is a phenomenon now understood by cancer experts, who suggest developing a “Survivorship Care Plan” that includes pro-active ways to move forward after treatment.
A New Normal
“The end of cancer treatment is often a time to rejoice. Most likely you're relieved to be finished with the demands of treatment. You may be ready to put the experience behind you and have life return to the way it used to be. Yet at the same time, you may feel sad and worried. It can take time to recover. And it's very common to be thinking about whether the cancer will come back and what happens now. Often this time is called adjusting to a "new normal." You will have many different feelings during this time. One of the hardest things after treatment is not knowing what happens next. Those who have gone through cancer treatment describe the first few months as a time of change. It's not so much "getting back to normal" as it is finding out what's normal for you now. People often say that life has new meaning or that they look at things differently.”
“For years people with cancer have worried about, joked about, and been frustrated by the mental cloudiness they sometimes notice before, during, and after cancer treatment. Even though its exact cause isn’t always known, and it can happen at any time during cancer, this mental fog is commonly called chemo brain. Patients have been aware of this problem for some time, but only recently have studies been done that could help to explain it.”
“Though patients and survivors often complain of chemo brain during and after treatment for cancer, a growing body of research shows that there are multiple causes behind the cognitive decline many survivors experience.”
A Cancer Survivorship Plan
“A treatment summary and survivorship care plan is a report of your medical history created for both you and your health care providers to help ensure you receive appropriate follow-up care. The plan includes a recap of all treatments you’ve received, as well as follow-up care instructions and important information needed to monitor for late- and long-term effects of your cancer treatment… You and your health care team are the best source for creating treatment summaries and survivorship care plans. To help you start the discussion, check out these tools:”
ASCO Cancer Treatment Summaries:
Journey Forward Survivorship Care Plan:
LIVESTRONG® Survivorship Center of Excellence at Univ. of Colorado
University of Colorado Cancer Center, UCHealth locations at St. Mary’s Regional Cancer Center in Grand Junction and St. Mary-Corwin Medical Center in Pueblo—and across the Rocky Mountain region.
“The University of Colorado survivorship program is one of seven LIVESTRONG® Survivorship Centers of Excellence supported by the LIVESTRONG® Foundation. Through UCHealth, the CU Cancer Center, and our extensive network of partnerships, we offer resources, support, and information to cancer survivors in Colorado—including our community-based centers at St. Mary’s Regional Cancer Center in Grand Junction and St. Mary-Corwin Medical Center in Pueblo—and across the Rocky Mountain region. Our comprehensive cancer survivorship program includes: Support groups and educational classes; Ongoing cancer survivorship needs assessment; Clinical programs for cancer survivors; Cancer survivor research and distribution.”