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 each year 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 of the University of Pennsylvania is committed to helping each cancer survivor find ways to enjoy life to the fullest. We have a nationally recognized program that is focused on the issues that survivors face. The Living Well After Childhood Cancer program was established with a grant from the Lance Armstrong Foundation (LAF). The LAF continues to help support the program and credits it as the premier model for helping survivors understand, address, and control the medical and psychological effects of a cancer diagnosis.
At Penn, we focus 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. These effects are commonly called ‘late effects'. 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.
Ultimately, the goal of the Penn team is to help empower survivors to minimize and control their potential late effects. Success is when you have the knowledge, personal support, and medical expertise needed to enjoy a full and enjoyable life.
What are some of the 'late effects' that I need to look out for?
What about my fear of recurrence?
Such feelings are common among survivors, and we can help you address them. Our goal is to make you feel empowered and that you are in charge of your long-term health.
Who should come to the Living Well after Childhood Cancer Program?
Anyone who has had cancer treatment as a child will benefit.
What will happen on the first visit?
In order to help you feel well and stay well, we need to have a full understanding of your medical and personal profile. During your first visit, we will talk about your past cancer experience, including treatments, and current medical situation. We may order several tests to give us additional information about your health. As needed, we will recommend visits with consultants, such as a cardiologist, to gather additional information. There will also be time to talk about how you have been feeling as a cancer survivor and openly discuss your personal concerns, which may range from anxiety about recurrence and genetics to insurance and fertility. We also use a questionnaire to get useful information about you, which is also used in our research so that we can come up with even better ways to identify and treat late effects. At the end of this visit, we will develop a game plan that is customized to fit your needs. This may include using other services, such as nutritional counseling, psychosocial counseling, rehabilitation . We wil make recommendations on ways to enhance and monitor your health, including appropriate screening tests.
What occurs after that?
Depending on your preference and personal situation, you may either be followed by the Living Well after Childhood Cancer team or your primary care physician, who will receive a letter from us with our recommendation, and researchers. We meet as a team on a regular basis to discuss patients, program planning, and research.
Do you work with my pediatric cancer doctors?
The Children's Hospital of Philadelphia (CHOP) started one of the first cancer survivorship programs in the country. CHOP physicians were early experts on the late effects of childhood cancer. These same CHOP physicians, along with their collaborating professionals, are active participants in the Living Well After Cancer Program and have helped us to develop the Living Well after Childhood Cancer service. They work closely with us in transitioning survivors from care at CHOP to the University of Pennsylvania 's Abramson Cancer Center when they are over 21.
Will you work with my personal oncologist or primary care physician?
A special feature of our program is our flexibility. We are very comfortable providing recommendations to your primary care doctor, who would then oversee your care based on our recommendations and guidelines.
Where can I get more information about cancer survivorship?
The Abramson Cancer Center regularly hosts programs of interest to cancer survivors. We also have two web sites, OncoLink (oncolink.org) and the Abramson Cancer Center (pennhealth.com/abramson), which are filled with information specific to cancer survivorship issues. The LAF web site (livestrong.org) is also and excellent source of information.
What research are you doing from which I might benefit?
Penn is leading the way in research that will benefit cancer survivors of all ages and types. In addition to developing national guidelines for monitoring the health and well being of survivors with different kinds of cancer, we are doing research on such issues as bone loss, hot flashes, the impact of acupuncture, and cardiac problems following certain chemotherapy treatments. Our goal is to optimize quality of life and to give survivors and their physicians the tools they need.
What is the cost of this service?
Program fees are usually covered by insurance. This includes doctor office visits and tests. Some services, such as nutritional and psychosocial counseling, are offered at no charge. In addition, we always appreciate donations to our program in addition since we are largely covered by grants and gifts.
What do I need to do to schedule an appointment?
Call 1-800-789-PENN (7366) to be connected toll-free to our Living Well After Cancer Program. We'll help you with the rest!
Rosalinda "Linda" Madara is a loving wife and mother and works as a florist and wedding planner. However, to the staff at the Rena Rowan Breast Center, Linda is the "Cookie Fairy" During her breast cancer treatments, Linda would bring in sweets each morning for the faculty and staff. Her desserts were such a hit that Larry Solin, M.D., her radiation oncologist, suggested that she write a cookbook. Linda started writing that summer, and she completed her 300 recipe cookbook titled, "Sweet Treats and Other Less Sinful Recipes" in 2005. She underwrote all of the publishing costs, and the book is now sold in the Rowan Center Boutique with all proceeds going to support breast cancer research and patient programs.