Our Children’s Cancer Survivorship Program helps young people live their best life after cancer or bone marrow/stem cell transplant. It’s one of the ways OHSU Doernbecher Children’s Hospital provides you and your family with complete support services.
- One of the most comprehensive childhood survivorship programs in Oregon.
- A team of experts who collaborate on every survivor’s case, and who’ve worked together for years.
- Support for health issues and the social, emotional and psychological impact of survivorship.
- Cancer and blood disorder specialists with deep experience in survivorship.
- Researchers who study cancer and blood disorder care and survivorship.
What is survivorship care?
Our program offers lifetime support for all childhood cancer and bone marrow transplant survivors. We’re here to help you and your family navigate the effects of childhood cancer treatment or bone marrow/stem cell transplant. We provide comprehensive care for as long as you need.
We follow the latest guidelines and recommendations for survivorship care.
Why is survivorship care important?
We are here to give survivors the knowledge they need to thrive.
Childhood cancer and bone marrow transplant survivors are at risk for certain physical, social-emotional and educational issues. Many patients experience “late effects” from these diseases and their treatments — sometimes years later.
It’s important to understand these risks and to have support to handle any issues as they arise.
How we can help
Our specialists work as a team to support you and your family after cancer treatment or bone marrow transplant. We generally work with patients who finished treatment at least two years ago.
You can see us for help:
- Understanding the impact of cancer care or bone marrow/stem cell transplant, including possible long-term effects from chemotherapy, radiation therapy or surgery.
- With recommendations for future health screenings, based on your treatment history.
- Managing social, emotional and educational issues related to cancer treatment and bone marrow transplant.
- Understanding the cognitive (thinking) issues that may result from some treatments.
- Navigating insurance coverage and employment issues.
- Finding information and resources to help survivors lead a healthy, active life.
We also offer education and support for late effects such as:
- Damage to heart and lung tissues.
- Decreased bone density, joint damage and scoliosis.
- Dental health issues, including short roots and weakened enamel.
- Vision concerns and cataracts.
- Hormonal concerns such as stalled growth, thyroid issues and infertility.
What to expect
You will complete a detailed questionnaire. Your treatment history will help us decide what tests might be needed. We will work with you to schedule any lab or other tests in advance at a clinic close to your home. Our goal is to have the test results ready to discuss with you at your first appointment.
Our specialists will review you or your child’s medical history and other information. If you were treated outside of OHSU, we may ask you to authorize the release of medical records to us.
The first appointment often takes up to four hours as you meet with many experts on our team. At this time, most appointments are virtual. We offer limited in-person visits at Doernbecher’s Specialty Pediatrics Clinic at Salem Health.
Our team members have expertise in caring for childhood cancer and bone marrow transplant survivors. You will meet with a:
- Doctor or nurse practitioner
- Social worker
- Survivorship nurse
Some patients may also see a:
- Educational specialist
After the first visit, you will have:
- Information about how cancer treatment or bone marrow transplant might affect future health.
- A summary of past treatment, to give future providers a better understanding of your needs.
- Personalized recommendations for future health screenings.
- Suggestions and strategies to help with educational, social or emotional needs.
We will work closely with your or your child’s primary care provider and oncologist to recommend screenings and to offer health care advice.
We will recommend that you visit us as often as yearly or as little as every five years. At each visit, we will check in on your or your child’s health and give you updates on new research that could impact quality of life.
Insurance usually covers a visit to our clinic, but coverage varies. We will reach out to your insurance company for you, and let you know if anything won’t be covered.
If you don’t have insurance, we can connect you with an OHSU financial specialist to see if you qualify for assistance.
We recommend you schedule your first survivorship clinic visit at least two years after completing treatment. But we know that adjusting to life right after treatment can be a challenge.
We call the first two years after treatment ends “early survivorship.” This time is different for everyone. It may bring both joy and uncertainty. Adjusting back to school, work or other activities may take time. In whatever way you experience early survivorship, we’re here to help.
We offer webinars to help you and your family with this transition. These live group sessions are led by an oncology nurse and social worker who are experts in survivorship care. Learn more:
- Check back soon for webinar dates in 2023.
- View a webinar recording from Feb. 2021
Here are some tips we recommend to help ease your or your child’s transition:
- Write a list of questions to ask your care team. See our suggestions to get you started.
- Talk about school, work, financial or emotional concerns you have with your care team. We can help you meet with a hospital teacher, social worker or neuropsychologist for support.
- Re-establish care with your primary care provider or pediatrician. Talk with them about day-to-day health care needs, like vaccines, check-ups and mild sickness.
Childhood cancer and blood disorder researchers at Doernbecher and around the world are exploring many aspects of survivorship. Research helps us understand how treatments affect patients, and how we can improve the lives of all survivors.
We participate in national research studies and also lead our own studies in partnership with the OHSU Knight Cancer Institute. We may offer you the option to participate in a study. It is your choice whether to take part.
Members of our survivorship team work together to give you or your child the care and support they need. All of them specialize in caring for survivors. You may see:
- A doctor or nurse practitioner
- A psychologist
- A registered nurse
- A social worker
- A pediatric dentist
We may refer you to other health experts. They can help with issues relating to:
- Eye health (ophthalmology)
- Brain and spinal cord tumors (neuro-oncology)
- Bone health (orthopaedics)
- Heart health (cardiology)
- Learning and brain development
- Lung and respiratory health (pulmonology)
- Hormones (endocrinology)
Help us help childhood, adolescent and young adult cancer survivors.
Early Survivorship Webinar
Check back soon for our 2023 webinar dates.