When Elisabeth Schuler Russell's 2-year-old daughter was diagnosed with an often fatal, inoperable brain tumor in 1998, Russell was thrust into an unfamiliar world of doctors, tests, and treatment options.
She learned to make decisions under pressure, not to mention cope with family changes and deal with insurance, finances, and employment and caregiver issues. Now a renowned patient advocate, Russell shares her 10 suggestions to coping with a cancer diagnosis below:
1. Gather good information and learn the vocabulary of your illness. The Internet makes research widely available, but it can be a double-edged sword. Consult only credible websites, such as the National Cancer Institute and the patient site of the American Society of Clinical Oncology. Do not overload yourself by typing a diagnosis into your favorite search engine.
2. Make sure you understand your diagnosis. Ask the doctor to discuss the pathology report with you. Make sure you know the name of the cancer, the tumor grade, and other signs that may predict the cancer's behavior, sometimes called the prognostic indicators. Make sure to ask for a copy of the written pathology report. You will need this report for second opinions.
3. Build a strong cancer team. Many health care professionals will likely be involved in your care, including surgeons, oncologists, radiation oncologists, oncology nurses, social workers, physical therapists, and more. You are at the center of this team. Make sure you are satisfied with their credentials and experience, particularly if you are not being treated at a major cancer center. Verify that your doctors are accepted by your insurance plan, and don't assume that your team members communicate regularly.
4. Develop your cancer treatment plan. Your early treatment decisions are the most important, including your choice of doctors, where to go for treatment, which treatment option to select, and whether to enroll in a clinical trial. Consult resources such as the Treatment Decision Tools available on the American Cancer Society website.
5. Take names and notes. I cannot overstate the importance of getting organized early on. It doesn't matter if you use a computer spreadsheet or a small notebook; the key is to develop a system that works for you. Keep accurate and detailed contact information about your providers; prepare written questions and make sure you understand the answers (consider bring someone along to help); understand why you are being tested and ask for results; keep a current list of your medications, allergies, medical history and treatment plan.
6. Master the insurance maze. Insurance concerns are usually high on the list of worries. You must become an informed consumer. Read and understand your policy from beginning to end. Learn about deductions, co-pays, out-of-pocket expenses, and lifetime maximums. Understand your insurer's authorization and certification requirements. Most health plans offer case management services for a major illness; be sure to ask for one.
7. Conquer the paperwork. Aim to keep up with your medical paperwork so it does not overwhelm you later. Be sure to match bills to insurance claims and to check for errors in billing or diagnostic codes. A knowledgeable friend can organize your medical paperwork to help with this important task.
8. Ask for and allow yourself to receive help. Folks want to help when they learn you have cancer, but besides bringing food, most are unsure what to do. Tell them what you need: the soft shoulder of a trusted friend, help with cooking, laundry, childcare, transportation, or housework. At the same time, it is exhausting to answer well-meaning phone calls and inquiries. Consider using a free website such as Caring Bridge to stay in touch with loved ones.
9. Don't let money be an obstacle. There are many resources available through national and local organizations to help patients with financial assistance, air transportation and housing assistance, or medication and treatment costs. Start with your hospital's social workers.
10. Take care of you. Healing and recovery encompass more than traditional medical treatments. Patients often seek complementary therapies that support mind, body, and spirit. The National Center for Complementary and Alternative Medicine is a good place to start. Many specific cancers have their own websites and support groups. In addition, your hospital, local service organization, and faith community may offer services.
No cancer journey is the same and no one can predict the outcome. But for those who win the battle, and even for some of those who don't, there is this silver lining: We usually come away with a better understanding of who we are and what really matters in life.
Elisabeth Schuler Russel is a patient advocate who founded Patient Navigator in 2004 after navigating her 2-year-old daughter's journey through an inoperable brainstem tumor.