Transitions & Navigating Care

As a childhood cancer survivor, it is important for you to advocate for yourself, in healthcare, education, and employment. Self-advocacy means being able to speak up for yourself, being informed, knowing how to get information, and taking charge to improve your quality of life. This section is designed to help you battle the challenges you face during transitioning and navigating care.

How to Become a Better Self-Advocate

  • Become educated about your disease and how it was treated. One of the best ways for you to do this is to have regular appointments at a long-term follow-up clinic for childhood cancer survivors. A list of clinics in your area is found in this notebook.
  • Keep up on new developments in the study of your disease and new studies on late effects of that type of cancer and of the treatment you received. The International Cancer Research Portfolio and the Children's Oncology Group have online resources that may help you and your healthcare provider: Cancer Portfolio, CureSearch, and Children's Oncology Group.
  • Be sure to carry with you at all times the name and phone number of a healthcare provider who is familiar with your cancer history who can answer your questions or those of another healthcare provider who is treating you.
  • Make a folder or notebook of all important documents related to your treatment (treatment road maps, treatment summary, discharge summaries, pathology reports, etc.)
  • If you need to have a procedure, surgery or other medical treatment, ask your medical team how much experience they have in performing it. You are well within your rights to ask such questions. If you do not feel comfortable with their level of expertise, ask for a referral to another specialist or call your primary healthcare provider or long-term follow-up provider. 

For more tips on how to become a stronger self-advocate during periods of transitions and navigating care, click the image below to see the PDF of a presentation given in 2009 at CCCA's Rise to Action - LA conference by Mary Baron Nelson at Childrens Hospital Los Angeles.

How to Communicate with your Healthcare Team

Many people find it difficult to communicate with healthcare providers, even cancer survivors who have spent a lot of time in hospitals and clinics. It is more than likely that your parents have been in charge of discussions with you and asking questions of your doctors, nurses, and others. It is a new experience for you to be in charge of your own health, but an important area for you to take charge of. Remember that you have years of experience in dealing with your disease and treatment, and that most healthcare providers want to partner with you to give you the best care and support.

Healthcare communication tips:

  • Before any appointments, write down any questions or concerns you have and bring the list with you. Be sure to try to get answers to all of them. If there are a lot of questions, you may want to let the scheduler know in advance so more time can be provided for you.
  • Consider bringing a friend or relative with you to take notes. Don't allow them to take charge of the appointment, but it is often helpful to have two sets of ears listening, especially if you are nervous or anxious.
  • If you do not understand something, repeat back to your doctor or nurse practitioner what you think you heard. It's okay for you to ask about the meaning of words you don't understand or to ask them to write down terms so you can research them further on your own.
  • Try not to get frustrated if you don't feel your concerns are being heard, but be persistent. Tell your healthcare provider what you are confused about. Be assertive without being rude by saying things like, "I'm confused or concerned about..." instead of "You are not being clear about...." This is another reason that bringing a friend or family member along can be helpful.

How to Ensure the Best Quality of Life

  • Take advantage of peer support groups in your area or online social networking groups for young adult cancer survivors. CancerCare is an online resource that offers professionally run support groups. Planet Cancer is another website that provides this type of support.
  • Remember that you have control over some of your health risks and that you empower yourself by maintaining a healthy lifestyle. Protect yourself from sun exposure and use sunscreen, limit alcohol intake, maintain a healthy diet, and do not smoke. These are positive, healthy ways to take control.
  • Share your feelings with those close to you, including family and close friends. Realize that your cancer experience was a significant part of your life that has shaped who you are, but this can be a positive thing. If you are finding it is creating a lot of negative feelings, you may want to ask for a referral to a counselor who can help you work through your feelings.
  • If you are having trouble getting around because of fatigue or physical late effects, ask you healthcare provider if you would be a candidate for a handicapped parking permit. In most states, these can be obtained from any Department of Motor Vehicles (DMV) office - check with your local DMV. Your healthcare provider will likely need to fill out part of the form and sign it.

Transitioning from Pediatric to Adult Care

"Survivor care is increasingly available and improving. [The transition] is something that needs to occur. Survivors need to embrace it and start planning early. There's a lot that needs to move with the patient. When you hit 18, it's no longer appropriate to receive adult care in a pediatric environment." - Dr. David Freyer, Medical Director of the LIFE Survivorship and Transition Program at Childrens Hospital Los Angeles

The most crucial aspect of transitioning your care from your pediatric cancer team to any medical practitioner of adult care is a comprehensive treatment summary. With this tool, you can ensure that any doctors you see in the future will be well-briefed on your past.

Treatment summaries include detailed information about not just your cancer diagnosis but all the treatment you received, including total dosages and specific medications.

Although there are several variations of treatment summaries available, the Passport for Care (PFC) program, which was developed by the Children's Oncology Group (COG) and the Texas Children's Cancer Center at Baylor College of Medicine, takes a medical summary several steps further. The PFC is an online tool that takes the treatment summary and uses it to individualize a survivors' follow-up care guidelines. Because it is web-based with a user-friendly interface, the information is always available for health care providers and patients to access. Although the program began at Texas Children's Cancer Center, it has been expanding to be offered at all COG clinics.

For more information on long-term survivorship programs and options, check out the PowerPoint presentation below from Alma Rodriguez, Vice President of Medical Affairs at MD Anderson (presentation given at April 2010 RTA-Houston). Clicking the image below will take you to an easy-to-browse PDF of the presentation.

For information on transitions as they relate to education and employment systems, click the image below to see a PDF of a presentation given by Cecily Betz at CHLA's Keck School of Medicine (presented at RTA-LA in 2009):