Seattle Children's Cancer Survivor Program is our follow-up program for childhood cancer survivors. It aims to keep survivors healthy throughout their life by providing care and education about their health risks.
About 80% of children who have cancer survive their disease. For these children and their families, it's a great triumph to make it through cancer treatment. It's also the start of the child's journey as a cancer survivor — a journey that will last the rest of their life.
The life of a cancer survivor can be long and very healthy. But it can also present challenges, sometimes serious, because of the long-term effects of cancer and its treatment.
The Cancer Survivor Program was designed to meet the unique needs of survivors treated during childhood, whether they were treated at Seattle Children’s or elsewhere.
The program serves survivors who are still children, as well as adults who were treated for cancer during childhood. It also gives survivors the chance to take part in research studies so we can learn more about the best ways to keep survivors well.
Dr. Eric Chow directs the program. Karen Wilkinson, ARNP, coordinates and staffs the program and also provides case management as needed.
People who received a bone marrow or stem cell transplant need special long-term transplant follow-up care. We provide this as part of our Hematopoietic Cell Transplant Program. Rarely, some children who do not have cancer also need to be treated with chemotherapy or radiation therapy, and we can see those people in our program as well.
What to expect after cancer
Even when children are cured of cancer, their disease and treatment can affect their health for years to come.
As many as two thirds of childhood cancer survivors have adverse long-term effects. Some of these effects may appear early on. For example, some children who received radiation therapy to their brain may have trouble learning. These children may need support when they start or rejoin school.
Many effects do not appear or cause concern until later in life. For example, some children who received the chemotherapy medicine doxorubicin may get cardiomyopathy, a weakened heart muscle.
This heart problem can have no symptoms, but it can put women at higher risk of heart failure when they are pregnant and have their baby.
The long-term risks for each childhood cancer survivor depend on many factors. These include the type of disease, the treatments they received and their age at the time of treatment.
This is why the Cancer Survivor Program starts with a comprehensive review of the survivor's treatment and health.
Getting the information you need
It's not unusual for survivors of childhood cancer to misunderstand or to lack information about the effects of their disease and treatment.
For example, parents may choose to protect young children from all or some of the details about long-term effects.
This can be the right choice and useful at the time. But as children mature, it can become important for them to know more about what to expect and how best to protect their health.
Also, some patients and their families simply may not have the support to learn all they need to know about the survivor's disease, treatment and needs for long-term monitoring. This is why we offer the Cancer Survivor Program.
Childhood cancer is not very common in the general population. Community doctors may have limited knowledge of cancer survivors' needs. The Cancer Survivor Program also works with survivors' healthcare teams to share cancer information and suggest follow-up care.
Teachers, and, later in life, employers, may not understand the unique needs of childhood cancer survivors.
At school, some survivors may need extra help. But their teachers may not know this.
At work, some survivors need certain limits on their activity due to the treatment they had. Some employers may have misconceptions about survivors' abilities. This can lead to job discrimination.
The Cancer Survivor Program works with teachers and employers so survivors can meet their full potential without discrimination.
What's special about long-term follow-up at Children’s?
Our Cancer Survivor Program provides three types of services to childhood cancer survivors: clinical care, education and research.
Clinical care
- A complete health evaluation. Our multidisciplinary Cancer Survivor Program healthcare providers review the survivor's medical and cancer history, assess medical and psychosocial needs and recommend health-related follow-up care.
- Referrals to any social, community, medical and psychiatric resources or specialists that may be needed.
- Ongoing evaluations and coordination of care. We give special attention to issues that may relate to the survivor's cancer diagnosis and the treatment they had.
Education
- A copy of Childhood Cancer Survivors. This book, written by Nancy Keene, Wendy Hobbie, Kathy Ruccione and Giulio J. D'Angio, provides a thorough review of childhood cancer diagnoses, therapies and issues that may affect long-term survivors.
- A Seattle Children's Cancer Survivor Program Survivor Notebook. Each survivor gets a notebook that describes the treatment he received for his disease, the health issues he should be aware of, how to stay healthy and the long-term outcomes for which he is at risk.
- The personalized cancer treatment summary and long-term follow-up recommendations also are sent to the survivor's primary care provider and any other providers at his request
- Up-to-date cancer and health-related information and resources for the survivor and his family or other support people
- Guidance as the survivor transitions from pediatric to adult healthcare
- Education and consultation for healthcare providers about survivors' risks and needs
- A chance to network with other childhood cancer survivors and their families
Research
- The option to take part in ongoing research studies about medical and psychosocial issues for long-term survivors
Who needs the Cancer Survivor Program?
The Cancer Survivor Program is open to survivors of childhood cancer who completed cancer treatment and who have no signs of cancer. Most survivors come to our clinic around two years after finishing cancer therapy.
We offer the Cancer Survivor Program to survivors no matter where they received cancer treatment, and it's available to children and adults.
The program serves patients of Seattle Cancer Care Alliance (SCCA) and its parent organizations: Children’s, Fred Hutchinson Cancer Research Center and UW Medicine.
We also serve survivors who had treatment at other healthcare facilities in the Seattle area and elsewhere.
SCCA patients usually are referred to the Cancer Survivor Program by the oncologist who treated them. However, wherever they were treated for their cancer, survivors may be referred by their oncologist, primary care provider or another healthcare provider.
Survivors can refer themselves, too, and parents can refer their child. We do not require a referral from a healthcare provider.
Our team includes an oncologist, pediatric nurse practitioner and social worker. All patients may not see the entire team at each visit.
You will also get recommendations for monitoring possible long-term effects of your cancer and cancer treatment. We typically offer to see patients for follow-up on an annual basis (or more often as needed) to provide updated education and monitoring recommendations, as well as to perform any recommended testing for possible long-term effects of cancer and its treatment. We will refer you to your community healthcare provider for ongoing non-cancer-related clinical care. We also refer our survivors to healthcare providers at Children’s, UW Medicine or SCCA for clinical care in specialties such as endocrinology, pulmonary care, pediatric and adolescent gynecology, psychiatry, orthopedics, cardiology, vocational rehabilitation and pediatric and medical oncology.
Survivors who are 21 or younger receive a comprehensive evaluation and ongoing cancer-related clinical care at Children’s through their 22nd birthday. Our adult survivors of childhood cancer can be followed lifelong at the adult cancer survivor program at the Fred Hutchinson Cancer Research Center. The same services provided by Children's Cancer Survivor Program are provided for adults at Fred Hutchinson.
To get more information about the Cancer Survivor Program, to find out if you are eligible or to make an appointment to be seen by the program, please call Karen Wilkinson at 206-987-4752.