As Cancer Survivorship Soars, Dana-Farber and Others Take a Comprehensive Approach to Helping Patients Prepare for Life After Treatment
December 20, 2022
Young Women With Breast Cancer
By Lukas Harnisch-Weidauer
With advances in treatment increasing rates of cancer survivorship by leaps and bounds, caring for cancer survivors has become more important than ever. 18.1 million people in the United States are cancer survivors as of Jan. 2022, accounting for more than 5% of the population, according to the National Cancer Institute (NCI). That number is projected to increase to 22.5 million in the next decade.
"That's a major evolution in a relatively short period of time," notes Alicia Morgans, MD, MPH, a genitourinary medical oncologist and the medical director of the Adult Survivorship Program at Dana-Farber.
Morgans is well-aware of how the field is growing. Her team's goal, and the goal of other survivorship-focused teams at Dana-Farber, is to bring a greater awareness to survivors' particular needs. They aim to provide survivors — meaning every single patient living after a diagnosis of cancer — with the resources and care they deserve.
Survivorship Begins at Diagnosis
Today, many oncologists consider cancer patients to be survivors from the time of diagnosis and for the rest of their lives. This includes a wide spectrum of people who are on treatment, have finished treatment, or have advanced cancer.
This more modern definition of cancer survivor has its roots in the 1980s, when the National Coalition for Cancer Survivorship — a nonprofit survivor-led advocacy group — had its inception. Prior to the Coalition's definition of survivor, which includes everyone diagnosed with cancer, a "cancer survivor" was defined as someone who had survived for five years or more following a diagnosis. This older definition excluded a swath of patients who were facing critical issues related to their cancer and treatment.
"Survivorship then was focused on people who had been fully cured of their cancer and were moving on from active therapy," says Morgans. "There has been an evolution with this definition of survivorship."
At Dana-Farber, physicians in the Adult Survivorship Program are involved with patients right from diagnosis. If a physician or patient needs support from the survivorship team, they can reach out regardless of treatment status.
"This way, we ensure that patients have access to support that should not be withheld from them until five years later," says Morgans.
Many patients that are still early in their diagnosis can benefit greatly from psychosocial, cardiovascular, and fertility support, for example.
"These are things that a patient may need at any point in their cancer journey," Morgans notes.
For example, Morgans treats patients with genitourinary (GU) cancers, such as prostate cancer, in her clinic. Treatments are typically hormonal therapies that can cause side effects like mood changes, fatigue, weight gain, loss of libido, and of course, the resulting challenges to cope with those changes. Having survivorship resources involved from the outset can help address the unique needs of these patients and greatly improve their quality of life, according to Morgans.
"Some patients with GU cancers live long-term with their cancer," Morgans explains. "Many patients with metastatic or recurrent prostate cancer, for example, can live for years and even decades with their cancer. They need to learn to live with the effects of the treatment and the cancer itself."
Putting the Focus on Patients
According to data collected in the 1970s, approximately one in two people diagnosed with cancer survived at least five years. Now, more than two out of three patients survive that long. This is a direct result of advancements in cancer treatment and quality of life made possible by the work of medical researchers, faculty, and staff like those at Dana-Farber.
"The treatments that we are revolutionizing and the care that we are delivering only means an increase in the survivor population," Morgans asserts.
Morgans says there is a growing number of lung cancer survivors, for example, due to recent therapeutic developments in areas such as immunotherapy and targeted treatments.
"This is a field of huge and exciting transformation," says Morgans. "With more targeted therapies, patients with lung cancer are surviving longer."
Still, all patients face a wide swath of unique challenges, from coping with advanced disease and side effects from treatment to anxiety about recurrence and the psychosocial impact of their disease.
"We need to do everything we can to meet their needs," says Morgans.
According to the American Cancer Society, approximately one in four cancer survivors report a decreased quality of life due to physical problems caused by cancer. One in 10 report emotional problems.
Dana-Farber's Young-Onset Colorectal Cancer Center, led by director Kimmie Ng, MD, MPH, has contributed significantly to the growing survivorship of a young group of patients that, up until recently, had not received much personalized attention. At the Young-Onset center, Ng and her team not only treat cancer, but also support patients emotionally through peer support groups, workshops covering topics like how to navigate the professional world with cancer, and family support through resource specialists.
"These young adults will be long-term survivors that need unique and nuanced care," says Morgans. "Under the care of Dr. Kimmie Ng, they receive just that."
Young breast cancer survivorship has made similar strides through Young and Strong, a program for young adults developed by Ann Partridge, MD, MPH, a Dana-Farber breast oncologist and director of the Adult Survivorship Program. At Dana-Farber, these patients are guided through issues around fertility and family planning as well as social and professional challenges.
The Four Pillars of Survivorship
Dana-Farber's survivorship programs address the diverse concerns of a broad range of survivors and people with a history of cancer through a multidisciplinary approach. Their team of specialists, available to all patients and families at Dana-Farber, includes cardiologists, community resource specialists, endocrinologists, exercise physiologists, nutritionists, nephrologists, and more. The programs also offer online resources, including webinars made in collaboration with the Blum Center for Patients and Families, covering topics in nutrition, fitness, and spirituality.
Survivorship focuses on four pillars, according to Morgans. The first involves adequate screening and follow-up for recurrence detection, or a second cancer.
"This is because cancer survivors are at a higher risk of developing a second malignancy," Morgans explains.
The next focuses on screening for what oncologists call late effects.
"Sometimes, cancers themselves, or the treatments we use to cure that cancer, cause long-term complications," says Morgans. So, in addition to screening for a recurrence or secondary malignancy, survivorship physicians screen for late effects such as bone density loss, memory loss or personality changes, sexuality and fertility problems, or heart conditions like congestive heart failure and coronary artery disease.
The third pillar, addressing what physicians call modifiable health behaviors, focuses on individualized lifestyle choices that can minimize the risk of developing certain late effects and improve a patient's general health and quality of life. For example, intervention studies have shown that exercise can improve fatigue, anxiety, depression, self-esteem, happiness, and quality of life in cancer survivors.
Survivorship goes beyond the medical issues resulting from cancer and its treatment. People with a history of cancer can benefit hugely from mental and social support. Dana-Farber initiatives that provide a sense of community at Dana-Farber include the One-to-One and SoulMates programs, which pairs patients undergoing treatment with another person who has undergone similar treatment.
Finally, survivorship physicians' fourth area of focus involves ensuring coordination of care.
"This means making sure that these tools and resources are delivered to patients," says Morgans. "And making sure that each issue is not treated in isolation. The whole patient needs to be considered."
Survivors often require care from multiple disciplines, and it's important that they are in communication to provide the best care, Morgans notes. It's equally important that patients leaving a treatment facility are being set up with proper primary care as well.
"The Adult Survivorship Program at Dana-Farber meets patients wherever they are from the moment of diagnosis, through treatment, and the post-cancer period for patients who are cured, to provide them with the resources they need to make their experience safer, happier, and healthier," Morgans says.