When most people are diagnosed with cancer, they focus on beating it. Historically, treatment and cure were the main focuses of oncology clinicians and researchers, with less attention paid to the overall needs of patients and their families or the effects of treatment on quality of life and the future.
As diagnostics and treatments continue to advance, we see more people living as cancer survivors. In fact, according to the American Cancer Society, in collaboration with the National Institutes of Health, there is an estimated 17 million cancer survivors in the US and growing each year. Long-term survivorship care has become an important next step in the cancer journey to keep survivors, and their loved ones, on the path to living a healthy, fulfilling life after cancer.
What is Cancer Survivorship?
Cancer survivorship has two common meanings:
- Having no signs of cancer after finishing treatment
- Living with, through and beyond cancer
Cancer survivorship starts at diagnosis. It includes people who have ongoing treatment over a longer period of time as well as those who have been cured or achieved remission from cancer.
Three Phases of Cancer Survivorship
There are three phases of cancer survivorship:
- Active treatment- the phase when you are receiving cancer treatments such as surgery, radiation therapy, or chemotherapy.
- Post-treatment- the phase after you have completed active treatment. During this phase, you will have regular checkups and screenings to look for any signs that the cancer has returned.
- Long term follow-up- during this phase, you will continue to see your health care providers for regular checkups and screenings; however, the frequency of these appointments vary.
Why is Survivorship Care Important?
Many survivors are at risk for recurrence of their primary cancer. Cancer survivors may also experience late effects of treatment such as secondary cancers resulting from chemotherapy and/or radiation, cardiovascular disease, endocrine disorders and general symptom distress resulting from their cancer treatments. Long-term survivorship care is designed to monitor and provide the tailored support needed to help survivors transition from treatment to a life of confidence in remission. Survivorship care also includes psychological and emotional support services for both the survivor and their loved ones to help them process and move forward with their cancer journey.
Changing How We Think About Cancer Survivorship Care
In 1985, Anna T. Meadows, MD, an internationally distinguished oncologist formerly at The Children’s Hospital of Philadelphia, changed the way we think about cancer survivorship care. She established a childhood cancer survivorship program at The Children’s Hospital of Philadelphia, the first such organized program at that time. She was also the first clinical investigator to study the effects of cancer treatments on the growing minds and bodies of children diagnosed with cancer. This information informed the ability to design clinical trials that were intended to study how these devastating consequences could be avoided while maintaining cure rates.
Dr. Meadows had the vision and foresight to recognize that adult cancer survivors were living longer and also needed specialized care. In addition, the adult survivors of pediatric cancers, also living longer lives, needed a place to transition their care to adult medicine. In 2001, together with Dr. Meadows, Penn Medicine built the first Adult Cancer Survivorship Program in the country at the Abramson Cancer Center.
Linda A. Jacobs, PhD, CRNP, FAAN, Director for the Development of Cancer Survivorship Clinical Programs, Research and Educational Initiatives at Penn Medicine states, “Dr. Meadows has been my inspiration and guiding light over the years as the Penn Survivorship Program, a clinical and research-focused initiative, became established and survivorship care moved to the main stage in cancer care across the country and world.”
In addition to caring for survivors of adult cancers, Dr. Jacobs, along with Dava Szalda, MD, MSHP, Director of the Med-Peds Fellowship Program and a Pediatric oncologist at CHOP, follow adult survivors of pediatric cancers. Many of these now 20, 30, and 40-year-old adults were treated by Dr. Meadows and remember every detail of the care she provided many years ago. They have been dealing with innumerable challenges throughout their lives, and in many cases, they and their families have had to adapt to a new normal, which can be cut short by the late effects of the treatment they received.
“I am honored to be a part of the lives of so many wonderful patients and families, says Dr. Jacobs, “They have taught me how to be a better listener and provided me with insight into the struggles they experience. They inspire me every day with their ability to be grateful for the lives they are living and be accepting of whatever comes their way in life.”
The Survivorship Program at Penn Medicine
The Survivorship Program at Penn Medicine provides patients and their families with quality physical and psychosocial follow-up care, coordinates care with other providers, orders labs and diagnostic studies, and provides close surveillance for new cancers and referrals to appropriate support services.
Together with a patient’s primary oncologist or primary care doctor, we focus on medical, personal, social and economic concerns and develop strategies for maintaining long-term health and well-being. Our experts evaluate the patient’s responses to a questionnaire that asks about current symptoms and helps to identify some of the potential late effects of the specific treatments the patient received.
These questions help identify:
- Heart, thyroid and bone density problems
- Fertility issues
- Intimacy and sexuality concerns
- Genetic risk of cancer among children and siblings
- Risk for developing another cancer
- Quality of life issues
Based on the response to the evaluation, patients may be referred to other specialty providers and a personalized care plan is put in place. Additional testing and or research opportunities may also be recommended. Each visit emphasizes education so that patients and their families are armed with the tools they need for optimal well-being.
Research for the Future
Survivorship care is a growing field and our experts continuously study the outcomes of our patients to ensure that the program evolves to meet the current and future needs of cancer survivors. Findings from our research have been published in the Journal of Cancer Survivorship, the Journal of Oncology Practice, the Journal of Community and Supportive Oncology and the Journal of Medical Internet Research.
For more information about the Abramson Cancer Center Survivorship Program contact the Clinical Program Coordinator, Donna A. Pucci, MHK, at 215-615-3329.