As part of our Health Disparities Town Hall initiative, we listened to community groups who identified specific challenges that marginalized AYAs face as they navigate cancer care. One common challenge identified by AYA patients and survivors was the difficulty understanding confusing medical and corporate jargon used in patient-facing literature when navigating treatment, medication, and insurance.
You already have enough on your plate as an AYA, the last thing you need to expend energy on is decoding complicated medical terminology. To help alleviate the burden of cancer, Stupid Cancer has created the ABCs of AYA, a new guide to cancer terminology written specifically for AYAs. The first phase focuses on diagnosis and treatment related terms and we will be growing this guide in quarterly phases over the next year to create a more comprehensive resource for you.
DIAGNOSIS and TREATMENT
Adjuvant therapy is any treatment that is given after the main treatment to destroy any remaining cancer cells and reduce the chance of cancer coming back. Neoadjuvant therapy is treatment that is given before the main treatment to help make the main treatment more successful.
A biopsy is a procedure to remove cells, tissue or fluid so that it can be examined by a pathologist to determine whether the cells are cancerous or not.
Cancer patients undergo routine blood tests to monitor their blood cell counts during cancer treatment. Usually they will be monitoring platelets, red blood cells, and white blood cells.
Platelets are the type of blood cell that help stop bleeding. When these are low you may bruise easily or bleed more easily.
Low platelet counts may sometimes be called thrombocytopenia. Patients may receive a platelet transfusion when their counts become critically low.
Red blood cells (RBCs) are the blood cells that contain hemoglobin, the substance that carries oxygen to all of the cells of the body. Anemia is when patients have low red blood cells, which can cause them to feel fatigued or short of breath. When anemia is more severe patients may have to pause treatment or adjust dosages.
White blood cells (WBCs) are the blood cells that help the body fight infection. There are five types of white blood cells. During treatment, doctors closely monitor the levels of neutrophils, which help fight bacterial infection. A low white blood cell count is sometimes called neutropenia. Medications may sometimes be given to help stimulate bone marrow production to help increase white blood cell counts.
Chemotherapy is a form of treatment that uses drugs to kill cancerous and other fast-growing cells in the body. Chemotherapy is often given through an IV but can also be administered through injection or taken orally in pill form.
CT scan stands for Computed Tomography, which is a type of diagnostic imaging scan that takes cross-sectional x-rays of the inside of the body to identify abnormal areas or tumors. CT scans usually take anywhere from 10 – 30 minutes and sometimes require contrast dye to be given orally or by IV, which helps better identify abnormal areas on the scan.
Malignant means cancerous cells are present.
Metastatic cancer is the term used when cancer has spread from the primary site to another part or parts of the body and a metastasis refers to the cancer cells that have spread.
MRI stands for Magnetic Resonance Imaging, which is a scan that uses large magnets and radio waves to produce detailed images of the internal structure of the body including organs, bones, muscles, and blood vessels. Some MRIs require the patient to not eat prior to the scan or may require contrast dye to be taken orally or by IV. General scans usually take about 45-60 minutes and specialty exams can take up to 2 hours.
NED stands for no evidence of disease and is used when tests, physical exams, and scans show that all visible signs of cancer have disappeared. NED does not necessarily mean that a patient is cured because there still may be microscopic cells of cancer that are undetectable by current technologies.
Remission means that the signs and symptoms of cancer have reduced or disappeared. There are two types of remission: partial and complete. Partial remission is when some, but not all signs and symptoms have disappeared and complete remission is when all signs and symptoms of cancer have vanished, although some cancer cells may remain and be undetectable. Generally when a patient has completed five years of complete remission they are considered cured.
NED and remission are very similar terms but they are not interchangeable. NED is commonly used after a surgical procedure, specifying that cancer is not currently detectable through scans, bloodwork, or other tests. Remission is more broad and refers to the treatment stage where signs and symptoms of cancer have decreased or disappeared. Since these terms are very similar it’s important for patients to clarify with their treatment team what they mean when using either of these terms.
PET scan stands for Positron Emission Tomography scan, which is an imaging test that uses radioactive substances to scan for disease in the body. PET scans are often used to diagnose cancer or assess cancer treatment. Patients are given an IV injection of a radiotracer prior to the exam which takes about 60 minutes for your body to absorb before the scan begins. The actual PET scan itself usually takes about 30 minutes to complete.
Prognosis refers to the expected outcome of a disease. This includes how cancer will affect you, how it will respond to treatment, and the likelihood of recovery or cancer coming back.
Protocol is the detailed plan for treatment that outlines what treatments will be used, what dosages, and the schedule of treatment. Protocols are based on research and will be determined by type and stage of cancer, health history, prognosis, the patient’s ability to tolerate certain treatments, and should also take patient preference into consideration.
Radiation therapy is a form of treatment that uses electromagnetic waves or particles of radiation to kill or control the growth of cancerous cells. Some radiation treatments use radioactive substances that are given orally or through an IV. Most patients feel little to no discomfort when radiation is administered into the body but it may cause skin to become temporarily irritated, swollen, or blistered.
Relapse or recurrence means that cancer has returned after a period of remission. Cancer relapse generally occurs when some cancer cells have remained in the body despite treatment. A recurrence can be local, which means the cancer has returned to the same location, regional meaning the cancer has come back in lymph nodes or near the same location, or it can be distant, which means it has come back to another part of the body.
Staging is the process of categorizing the size of cancer and if and where it has spread from the primary site. Stage 0 means no cancer but only abnormal cells that potentially could become cancerous are present. Stage I or early stage cancer is when cancer is small and only in one area. Stage II and III is when cancer is larger and has grown into nearby tissues or lymph nodes. Stage IV, also known as metastatic or advanced cancer, is when cancer has spread to other parts of the body.