World Cancer Day has once again been and gone. The annual campaign brought with it a flurry of fundraising, awareness drives, international and local news articles and countless tweets, posts, likes and shares on social media. Many research-centered posts by academic institutions, funders and biotech companies focused on the hope of new treatments and the innovative solutions being investigated, all at various stages of the lengthy research pipeline.
Most of the personal stories shared on blogs, social media and by charities featured those who have been lost along with some of the optimism about these new treatments. But an increasingly large proportion of those driving this traffic online are cancer survivors, not only talking about their experience of having had cancer but how it continues to affect them.
There are over 15 million cancer survivors in the U.S. alone, but despite these growing numbers, survivors have not previously been a main focus for cancer researchers and health professionals. A lot of resources are justifiably focused on new treatments for those who cannot be helped with current therapies, but as the number of cancer survivors continues to grow, a new research field looking at the long-term effects of treatment has been steadily emerging over the past couple of decades.
Dr. Corinne Leach, Ph.D., Strategic Director of Cancer and Aging Research at the American Cancer Society, is one of a growing number of researchers focusing specifically on the long-term effects of cancer treatment.
“The health issues that patients face are different during treatment compared to after treatment. Afterwards, patients start seeing their doctor less regularly and they don’t always feel prepared for what comes next,” said Leach.
Leach and her team are studying long-term side effects in survivors of major cancer types, such as breast, prostate and colorectal. All of these tumor types require different treatment interventions, involving combinations of chemotherapy, surgery and radiotherapy, giving rise to a variety of long-term side effects, largely specific to the individual patient. However, some side effects are shared by survivors irrespective of cancer type.
“Two of the most commonly reported side effects are fatigue and fear of cancer returning. This extreme fear of cancer recurring can negatively interfere with multiple aspects of someone’s life,” said Leach.
One of the initiatives she has helped pioneer is Springboard Beyond Cancer, a joint venture between the American Cancer Society and National Cancer Institute to create an online, e-health solution to help survivors manage their health challenges both during and after cancer treatment. As anyone who has ever had cancer knows, even after getting the ‘all-clear,’ a whole new experience begins. Most cancer survivors have side effects from their treatment and although individual experiences vary greatly, they can drastically affect both quality of life and in some cases, life span.
“Patients have to find out what their new normal is and figure out how to manage their new health issues,” said Leach.
Springboard Beyond Cancer features a wealth of information enabling survivors to learn about cancer side effects and to watch and read about the experiences of other survivors. All of this is linked with shareable functions so that survivors can interact with others via existing social media accounts, fostering a supportive community underpinned by a backbone of evidence-led interventions to help them manage their health after cancer.
Better management and provision for the needs of cancer survivors isn’t just good for individuals and their families, it’s also good for the economy. Research is starting to suggest that improved self-management, assisted by ventures such as Springboard Beyond Cancer, may facilitate a quicker return to work.
The American Cancer Society predicts that there will be 20.3 million survivors by 2026 and 26.1 million by 2040, so the U.S. healthcare system will inevitably have to change to care for these vast numbers of people.
“The system for caring for cancer survivors in the U.S. we have currently is not sustainable. We have more survivors and they are living longer, which is, of course, wonderful, but healthcare systems are not currently set up to care for a large and increasing number of survivors,” said Leach.
There’s also the recurring question, who is responsible for the care of cancer survivors? Oncologists are constantly busy with new patients, and although many survivors have frequent screenings to test for any recurring cancers, which is clearly under the remit of an oncology team, it is unrealistic to expect oncologists to care for both those with cancer and cancer survivors for several decades after treatment.
In an ideal world, health professionals from various disciplines will solely specialize in cancer survivorship to care for these individuals. Some physicians and clinics do already exist, especially at bigger cancer treatment centers, but a lot of expansion of these schemes is needed, and quickly, if cancer survivors are to receive optimal care. Primary care physicians often encounter cancer survivors, but lack specialist training in how to correctly and reliably identify late effects from cancer treatment and act accordingly. However, a venture from the American Cancer Society aims to change this, by making their ‘Cancer Survivorship Care Guidelines’ available in app form to facilitate easy access for primary care medical staff.
Cancer survivorship was previously a niche area of research, dwarfed entirely by the search to find new treatments, but this is thankfully changing and survivors themselves have been instrumental in orchestrating this.
“Cancer survivors themselves really helped to define what cancer survivorship is. They were and are strong advocates for improvements in research by making their voices heard, and they came together and really pushed for more work in this area. It is incredibly powerful,” said Leach.