More than 80 percent of children with a cancer diagnosis will be a survivor and live into adulthood. One in 600 adults will be a childhood cancer survivor. This is a vast improvement over years past when a cancer diagnosis was much more foreboding. But as a Pediatric Nurse Practitioner with over 25 years experience in pediatric oncology, and as a sibling of two sisters diagnosed with cancer, I know from first-hand experience that we must do a better job helping survivors live healthily into adulthood. The key is to educate cancer patients, through Survivorship Programs, about potential late effects, risks, wellness habits, and emotional issues that may arise from living through the trauma of a cancer diagnosis.
I grew up in a large family with three brothers and four sisters. Two of my sisters were diagnosed with Hodgkin’s Disease at 12 and 13 years of age. When my older sister, Diane, was in her early 40’s she developed late effects – in the form of breast cancer and Heart Failure – results of the cancer treatment she received as a teenager. Doctors did not realize these were late effects of her treatment, because during the 90’s, late effects of childhood cancer were just starting to be a topic of discussion. My sister passed away when she was 46 years old. My younger sister developed Thyroid cancer, which was treatable with surgery and medication.
The word “survivor” has several definitions in the dictionary:
- To remain alive or in existence;
- To carry on despite hardships or trauma;
- To remain functional or usable;
- To live longer than; outlive;
- To cope with (a trauma or setback)
Even though Diane passed away, she was definitely a “survivor” for many years. She went beyond coping and persevered through so much adversity. As a child I really did not know what cancer meant, but witnessing my sisters suffer so much affected me for the rest of my life and determined my career path.
As an adult, I was able to take care of my sister more as she suffered through late effects. These personal experiences with childhood cancer and late effects influenced my career choice to become a Nurse and work in pediatric oncology. In graduate school (to become a Nurse Practitioner) I had a specific goal in mind: to start a survivorship program in my hometown to help survivors and their families with issues that may arise years later.
Life is a journey. Sometimes the journey is a nice, smooth path filled with happiness, and other times there are bends and turns in the road that may be difficult to navigate. The path for childhood cancer survivors may not be so clear. Thankfully, there are professionals available to help survivors transition into adulthood. They can be found in Oncology Survivorship Clinics: Pediatric Oncology Resource Center.
In order to live a healthy life going forward, survivors need to pack a few essential tools to navigate their future path:
—Oncology Off-Therapy Summary – Ask treating MD/APN for a copy you can complete. Many hospitals create their own version. Vital information you should always have on hand for future doctor appointments, especially with new doctors:
- List of chemo drugs and dosage
- Radiation – location/dosage
- Surgery details
- Important events occurring during/after treatment.
—Transition to an Adult Primary Care Provider – Share your Oncology Summary and the link to COG Long Term Follow-up Guidelines www.survivorshipguidelines.org.
—Take Control of Your Health – as stated in her blog for the Huffington Post, “Five Ways to Stay Healthy After Treatment for Childhood Cancer” (5/2/16), Nancy Keene advises:
“Survivors have little or no control over their genetic make-up or the environment in which they live. However, making healthy choices about how to live the rest of their lives gives them quite a bit of control over their future. A sizable number of adult health problems are linked to lifestyle choices, so the following are ways you can stay healthy:
–Don’t smoke (your insurance might cover programs to help you quit)
–Eat a healthy diet — Dr. Weil Anti Inflammatory Pyramid is a great guide
–Exercise and maintain a healthy weight (work out with a buddy to stay on track)
–Use sunscreen (especially on any areas that were irradiated)
–Make sleep a priority
–Drink alcohol in moderation, or not at all
Good health habits and regular medical care from experts will help protect your health and lessen the likelihood of late effects from your cancer treatment. You can learn more by reading Childhood Cancer Survivors, A Practical Guide to Your Future” by Wendy Hobbie, Nancy Keene, & Kathy Ruccione, and What Cancer Survivors Need to Know About Health Insurance found at www.canceradvocacy.org.
Joanne Quillen is a Pediatric Nurse Practitioner and started the first Pediatric Oncology Survivorship program in Wilmington DE. She graduated from University Pennsylvania School of Nursing with a focus in Pediatric Oncology. She is also a faculty member of the University of Pennsylvania School of Nursing. Joanne has had personal experience with childhood cancer which has influenced her career path to study and work in pediatric oncology.