Today, more people survive cancer than ever before. There are approximately 13.7 million cancer survivors in the U.S. alone, a number that continues to grow as advances in treatment and diagnosis are made. Not only are survivors at risk for recurrence of their primary cancer, but complex treatments place them at risk for long-term and late effects such as secondary malignancies, cardiovascular disease, endocrine disorders, and general symptom distress. As a result, cancer survivors require long-term, tailored survivorship care.
Paving the Way: The First of Its Kind
To address the need for long-term survivorship care, the Abramson Cancer Center developed the first adult cancer survivorship program in the country in 2001. It has evolved into the premiere survivorship program in the country.
Our program provides specialized care, addressing the wide array of physical and mental health issues experienced by cancer survivors and their families. Our clinical programs provide an unparalleled resource for all cancer survivors. We also offer a unique young adult program that draws adults diagnosed between the ages of 18 and 39, as well as adult survivors of childhood cancer from all over the region to the Abramson Cancer Center for follow up care and support.
We continue to lead the way in survivorship care by serving as a resource for hospitals and cancer centers across the country, offering education programs for providers and consultation for developing survivorship programs.
Transitioning From Active Treatment to Survivorship Care
The goal of the Survivorship Program team is to help coordinate care for survivors, and to minimize and control potential late effects. Success is when we have delivered the knowledge, personal support, and medical expertise needed to allow each survivor to enjoy a fulfilled life.
What Are Late Effects?
About two-thirds of cancer survivors will experience a late effect, either physical or psychosocial, of chemotherapy or radiation that persists or develops more than five years from the time of diagnosis. Knowing your risks can help you and your physician appropriately monitor your health. Your health care team will discuss any pertinent long-term and late effects with you and develop a plan to monitor and treat them.
How the Program Works
We work with your primary oncologist or primary care doctor and focus on medical, personal, social, and economic concerns as well as strategies for maintaining long-term health and well-being.
You will complete a questionnaire and tell us about any symptoms you are experiencing that can help to identify some of the potential late effects of your cancer treatment.
These questions will help to identify:
- Heart, thyroid, and bone density problems
- Fertility issues
- Intimacy and sexuality concerns
- Genetic risk of cancer among children or siblings
- Risk for developing another cancer
- Quality of life issues
Based on this evaluation, you may be referred to other specialty providers, a psychosocial counselor, nutritionist and/or cancer rehabilitation specialist. Our team may also recommend some additional testing, research opportunities, or consultations with other support services. Each visit emphasizes education so that you are provided with the information and tools you need for optimal well-being. Finally, a personalized plan is developed that provides a road map for action for you and your primary care provider.
Psychological and Social Support Services
Cancer has a profound emotional effect on many patients and their loved ones during the course of illness, treatment, and recovery. These feelings can continue after treatment has ended and the disease has gone into remission. Dealing with these issues can cause significant distress, and it is important to have support at these times.
We help coordinate the appropriate psychological services to help you and your family cope with the emotional side of cancer. We help you learn how to transition from being an individual undergoing cancer treatment to someone who is confidently in remission.
Survivorship After Childhood Cancer
The news about childhood cancer is more promising than ever before. More and more children are getting diagnosed early and doing well after a cancer diagnosis. In fact, three-fourths of the 12,000 young people diagnosed with cancer below the age of 18 are expected to have excellent outcomes.
As more children with cancer have better results, the number of adults who had cancer as a child continues to rise. This exciting result reflects the efforts of cancer researchers around the country who have dedicated their lives to finding better treatments that also reduce the potential long-term side effects from cancer and its treatments.
The Abramson Cancer Center Survivorship Program provides services to survivors of childhood cancer. We are committed to helping each cancer survivor find ways to enjoy life to the fullest by focusing on you and your particular medical situation and personal questions or needs. We help you understand the effects that your prior surgery, chemotherapy, and radiation therapy may have long-term on your health. Because we know that there may be psychological effects directly related to having had cancer as a child, our team is also prepared to help you work through your concerns. Other issues, such as insurance and infertility, are also discussed in a private, supportive environment.
A growing portfolio of research complements our clinical care activities and ensures that the Abramson Cancer Center is prepared to meet the current and future needs of cancer survivors. Findings from our research efforts 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.
One such study looked at young adult survivors’ confidence to manage their own health care and found that nearly half of survivors ages 18-39 had not received a treatment summary at the end of therapy, and 59% did not have a survivorship care plan. Ethnic minorities and survivors without a care plan were less confident in their ability to manage their own care. Even though they were on average nine years post-diagnosis, 69% still received most of their health care from their oncologist, suggesting a need for better transitions to primary care.
Linda A. Jacobs, PhD, RN, Director for the Development of Cancer Survivorship Clinical Programs, Research and Educational Initiatives, leads a project within the Abramson Cancer Center Breast Cancer Translational Center of Excellence focused on improving care by helping breast cancer survivors communicate their unmet needs to health care providers. An initial pilot study found that survivors have an average of ten to eleven symptoms. The most common symptoms include fatigue, insomnia, hot flashes, aching joints, and memory difficulties. Participants most wanted help with weight issues, joint pain, numbness, muscle aches and urinary problems. The number of symptoms reported was associated with lower quality of life, suggesting an opportunity for continued improvement in the survivorship experience.
For more information about the Abramson Cancer Center Survivorship Program contact the clinical coordinator at: 215-615-3329