Learning the Language
Sometimes the medical terms being tossed around sound like a foreign language. When you do not understand something that a member of your medical team says, it is okay to stop the conversation and ask for an explanation. It is imperative that you understand what is being discussed about your situation.
Along with the complicated words that will describe your diagnosis and treatment options, you will hear many buzzwords. Following are some of the most common with definitions that will help you apply them.
Advocate. You may hear that it is smart to be your own advocate or that you should advocate for yourself, but what does that mean? In simple terms, it is putting yourself first. You may be comfortable with taking care of your children, spouse or parents, but now is the time to focus on you. Advocating for yourself includes learning as much as you can about your diagnosis so you can communicate with your medical team. It is also asking questions, getting a second opinion, sharing your goals for treatment, standing up for yourself, taking care of your physical and emotional health and, sometimes, giving yourself a break.
Navigator. This is what it sounds like — someone who is going to lead you through this journey. Nurse navigators are professional registered nurses with oncology-specific clinical knowledge. They offer individual assistance to patients, families and caregivers in the often-complicated world of medical care. Patient navigators help patients set up appointments for doctor visits and medical tests and get financial, legal and social support. They may also work with insurance companies, employers, case managers, lawyers and others who may have an effect on a patient’s health care needs. They are sometimes called patient advocates.
Resources. This is a common word, but in the cancer world, it has specific meanings. Some resources help educate you about your diagnosis, treatment options, side effects and more. They may come from advocacy groups, your doctor’s office or another reputable source. Financial resources can help offset the cost of medications and the expenses that accompany a cancer diagnosis. Those may include transportation and travel costs, child care, caregiving and more. For example, you may choose to travel for treatment but are concerned about the cost of staying in a hotel for an extended time. Some organizations offer hotel rooms at reduced rates for cancer patients to help reduce those expenses. These resources are worth exploring. You may find that help is available in areas you do not expect, and it could make a big difference financially and emotionally.
Scanxiety. This made-up word describes the anxiety you feel while waiting for scans or tests and their results. Scanxiety is completely normal and is felt by many people, but there are ways to manage it. First, set expectations with your doctor about when you will get the results and how, so you are not left waiting and wondering. Then, try to focus on other things, such as exercise, social activities, movies, books or meditation.
Telehealth. You may hear this referred to as a virtual or online appointment. It is meeting with your doctor using your phone, computer or tablet instead of going into the office. If you do not have a device with a screen that enables you to see your doctor, ask if a telephone appointment works. Telehealth appointments are not meant to replace in-person appointments, but they offer a convenient alternative for certain visits. They can save the hassle of finding transportation, missing work, finding child care and more. They also allow you to stay home when you are not feeling well or are concerned about your risk of infection. After you are an established patient with your doctor, talk to the team about this option. Additionally, call your insurance provider to ask if your policy covers telehealth.