Treatment’s over! Now what? Early detection and better treatments have increased the rate and length of survival for many cancers so that there are now nearly 100,000 cancer survivors in Alberta. More than 50 per cent will live at least five years beyond diagnosis. But because most health-care systems focus on getting patients through cancer treatment, we know little about what happens for survivors once treatment ends. Surviving is just the beginning.
People can feel a bit lost as they make the transition to a new normal. They worry once active treatment has stopped, and about which new symptoms matter. They want to increase their odds of living well and long after cancer, and sometimes their friends and family just don’t understand their new approach to life. Although there are many resources and programs for people just diagnosed with cancer, there are few for people transitioning to survivorship.
My name is Janine Giese-Davis and I oversee a new multi-disciplinary group, called CancerBRIDGES, that aims to conduct research and develop effective programs based on Albertan survivors’ needs.
The label “cancer survivor” applies broadly to anyone diagnosed with cancer in the past, and his or her family or caregivers. Survivor programs focus on people who’ve completed the treatment (surgery, chemotherapy and/or radiation) they received at a cancer centre, and who are resuming the medical oversight of their family physicians in their hometowns. Often survivors feel abandoned by the medical system. They don’t know who to turn to if they have trouble reintegrating into their lives. They worry that their family physicians may not understand their cancer journey and treatment history. They often feel that they don’t fit at a cancer centre but, equally, they don’t fit with their normal, pre-cancer health-care path.
Although many survivors report positive changes following cancer, most research on survivors of adult cancer concludes that ongoing difficulties remain. Many survivors experience late effects, defined as unrecognized toxicities from treatments, absent or subclinical at the end of active treatment, but which later become visible. They also may experience long-term effects, defined as any complication from treatment for which patients must compensate.
Over the past several years, Canada, the United States, Australia and other countries have prioritized survivorship research and the development of evidence-based programs. Consistent themes include: empowering survivors to assert their needs, facilitating transitions across medical systems, advocacy and a person-centered approach to survivorship care. The multidisciplinary group I oversee, CancerBRIDGES, has made substantial progress, initiating integrated research-based care for survivors in Alberta. On survivors’ behalf, we are conducting studies to examine ways to make this transition easier for everyone. For example, we are studying how to create effective care plans that nurses can give survivors at the end of active treatment, scan into the oncology record, and copy to their family physicians so everyone will be on the same medical page.
We’ve also launched our program arm recently on cancerbridges.ca, and introduced a survivor network and educational sessions in Edmonton and Calgary, which we’ll record and deliver to rural locations. We want more survivors to become part of our survivor network. We want to hear their stories, good and bad, and we want to know who, in health care, has done an exemplary job. Cancerbridges.ca has a calendar that lists educational sessions and support opportunities Albertans can access after cancer. We hope to be the one-stop-shop for survivorship care and information. With the initiation of this column, we’ll provide updates, findings and takeaway advice related to the journey. Welcome to survivorship!
ISSUES IN SURVIVORSHIP
Long-term effects vary per patient. Some of the things we’ll look at in future columns may include:
- Physical issues
- Medical issues
- Psychological issues
- Social issues
- Existential and spiritual issues