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Navigating a pediatric cancer diagnosis can be overwhelming, especially with the many medical terms and jargon that families encounter. Understanding these terms is crucial for making informed decisions and feeling more in control, as well as better supporting families in navigating this process.
Below is a guide to some of the key terms you may hear during a child's treatment journey as well as a downloadable PDF to share with friends and family to become more acquainted with these terms.
Chemotherapy
Chemotherapy is a cornerstone of cancer treatment, involving powerful drugs designed to slow or completely stop the growth of cancer cells. This treatment can be used alone or in conjunction with other approaches like surgery or radiation therapy. While chemotherapy is often effective in targeting cancer, it comes with a range of potential side effects, both short-term (such as nausea and hair loss) and long-term (like the risk of secondary cancers). Understanding the role of chemotherapy and its effects can help you better prepare for the treatment process.
Immunocompromised
The term "immunocompromised" refers to the suppression of the immune system, which can result from both the cancer itself and the treatments used to combat it. A weakened immune system leaves patients more vulnerable to infections and illnesses, making it important to take extra precautions to protect your child during this time. This may include avoiding large crowds, practicing good hygiene, and following any specific recommendations from your healthcare team.
Inpatient/Outpatient
Cancer treatment can be delivered in different settings, primarily categorized as inpatient or outpatient care. Inpatient services require hospital admission, where your child stays overnight or for an extended period to receive treatment. Outpatient services, on the other hand, involve frequent hospital visits where your child receives treatment and then returns home the same day. Understanding the difference between these two settings can help you manage expectations and plan accordingly.
Hematology/Oncology
The hematology/oncology department is the specialized area of medicine that diagnoses and treats blood disorders and cancer. This department will likely be central to your child's care, as it encompasses the full spectrum of pediatric cancer treatment, from initial diagnosis through ongoing management and follow-up care. Familiarizing yourself with this department and its role can help you feel more comfortable navigating your child's treatment plan.
Secondary Cancer
Secondary cancer refers to a new cancer that develops after the initial cancer diagnosis. This can occur as a result of the original cancer or from the treatments used, such as chemotherapy or radiation therapy. The risk of secondary cancer is an important consideration in long-term survivorship, and understanding this risk can help you and your healthcare team make informed decisions about treatment and follow-up care.
Scanxiety
"Scanxiety" is a term used to describe the anxiety and fear that some patients and families experience before and after medical scans. This anxiety often stems from the fear of finding evidence of disease or cancer recurrence. Recognizing and addressing scanxiety is important for maintaining mental and emotional well-being throughout the treatment journey. Discussing these concerns with your healthcare team and seeking support when needed can help manage this common experience.
No Evidence of Disease (NED)
"No Evidence of Disease" (NED), also known as complete remission, is the point at which all available testing shows no signs of cancer remaining in the body. Reaching NED is a significant milestone in the treatment journey, and it often brings a mix of relief and continued vigilance. While NED is a hopeful outcome, regular follow-up and monitoring are essential to ensure that any signs of recurrence are caught early.
Survivorship
Survivorship extends beyond the patient to include caregivers, family members, and friends who are all affected by the cancer journey. According to the National Cancer Institute, cancer survivorship begins at diagnosis and continues through the rest of the patient's life. It encompasses the physical, emotional, and psychological aspects of life after cancer treatment. Understanding survivorship is key to providing comprehensive support for both the patient and their loved ones as they navigate life after treatment.
Palliative Care
Palliative care is a specialized approach to care that focuses on improving the quality of life for patients with serious illnesses, including cancer. It can be provided alongside curative treatment or as part of end-of-life care. Palliative care addresses not only physical symptoms but also emotional, social, and spiritual needs, ensuring that patients and their families receive holistic support throughout the treatment journey.
Maintenance
The maintenance phase of cancer treatment occurs after the initial, more intensive phase and focuses on monitoring cancer growth or recurrence. This phase often involves lower-dose treatments and supportive care aimed at maintaining remission and preventing the return of cancer. Understanding the goals of the maintenance phase can help you adjust to this new stage of care and continue supporting your child's recovery.
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