Request copy of your cancer treatment summary and medical records

The first step to ensure you receive good follow-up care is to request from the oncologist or clinical nurse practitioner who treated you a written summary of your treatment and the complications that occurred during treatment. This permanent record will provide all future healthcare providers with your complete health history and cancer treatment in order to work with you to maximize your health. Download a copy of Comprehensive Cancer Treatment form used by the Children’s Oncology Group (see Resources for website) and have your cancer treatment team fill out all the information that includes: the name of the disease, date of diagnosis, all treatments and surgeries, place of treatments, total dosages of drugs, amounts of radiation, and necessary follow-up.

Survivors should keep copies of their medical records in their possession. Most hospitals have electronic medical records (EMR) systems and you can gain access to your treatment summary. However, request a paper copy of your treatment summary before you leave that institution or at your first survivorship visit. It is very important to keep your own copy of your treatment summary and medical record (including all scans/MRIs) in your possession. Gaining access to your records at institutions years after treatment for cancer can be difficult, especially if you relocate to another medical institution, so request copies soon after treatment.

Choose a healthcare provider and schedule yearly follow-up visits

The second step is to pick a healthcare provider. Refer to the information in Chapter 1, Survivorship, which will help you to select an appropriate healthcare provider. You should regularly schedule and attend follow-up care visits, usually yearly, unless other symptoms or problems occur.

Yearly medical care should include the following:

• Physical examination

• Complete blood count (CBC)

• Kidney and liver function test

• Recommended immunizations (chemotherapy and radiation can render prior immunizations ineffective, so ask your health care provider to update any vaccines recommended by the CDC guidelines (see Resources for website).

• Manual breast examination for women

• Testicular examination for men

• Screening tests (e.g., mammogram, stool check) as recommended by your healthcare provider based on your unique treatment history

Other medical tests you will need for follow-up depend on the treatment you received for your cancer. You and your healthcare provider can refer to an important resource: the Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers (V 6.0, 2023) (see Resources for website). This resource allows you/your healthcare team to check your specific type of treatment and determine which tests may be necessary in the future. Your provider and healthcare team can help interpret this information. The Guidelines also contain patient-focused education.

Lifelong long-term survivorship-focused follow up visits

You can protect your good health by getting regular examinations from health providers experienced or educated in treating the late-effects of childhood cancer. These experts can inform you of your risk of potential late-effects and what you might expect in years to come. They will inform you of appropriate tests to ensure early detection and intervention if a late effect occurs. Delayed effects from treatment occur in only some survivors and range from mild to severe to even life-threatening. Many of these effects are easy to detect and treat, but may occur many years after treatment, so you need lifelong long-term survivorship-focused follow up visits.

Many survivors do not receive follow-up care from experts in the late-effects of childhood cancer. This information is vital to your future health and well-being. When you leave home to work or attend college, you will begin to make your own medical decisions and you need to be informed. You may not know the specific type of treatments you received or what medical surveillance you need to check for possible late-effects. You may think the chances of developing problems or late-effects are so slight that you just don’t want to think about it. You should consult an expert and educate yourself about the type of cancer treatments you had and what to expect from possible late-effects.

See Chapter 1 Survivorship, the section, How to create your own follow-up healthcare team, for guidelines to help you select a health care provider in your area who is knowledgeable of survivorship and possible late effects, willing to review your treatment history, and develop your follow-up plan of care for regular visits and any recommended screenings/tests. Passport for Care (see Resources for website) is another useful resource to use with your healthcare provider to develop your follow-up care.

Many survivors (or their parents) take an active role in their own follow-up care. They search out follow-up programs in nearby or distant cities and travel to get the care they need. Today telehealth video or phone appointments are often available making it easy to chat with experts regarding any late-effects that develop.

Consulting an expert regarding late-effects after childhood cancer can help with the following information:

• Help with transitions from treatment to post-treatment and from child to adult care

• Screening and health promotion to help prevent and manage late effects

• Education and information needed to maintain health