What follows are some steps to reduce your misunderstanding and to increase the opportunity to get the best care, if and when you learn that you or someone you care about is diagnosed with cancer.
Study and understand your health insurance coverage
It is important to fully understand your choice of facilities and health care providers when selecting a health plan. Those who advise you to seek second opinions, find another doctor, go to a major cancer center, etc., may believe that they are providing sound advice. However, you may face barriers to accessing this type of care based on your insurance coverage. If you think that you might want to get an opinion or treatment at a major cancer center and/or specialist out of your area (if you are diagnosed), make sure that you fully understand your “out of network” benefits. If you don’t, contact your health plan or your employer’s benefits administrator.
Headlines are meant to sell newspapers and magazines and can be misleading
Hardly a day goes by without a news story heralding some breakthrough or major finding about cancer. One headline tells us certain foods may increase our risk for cancer, while another study and story may dispute that evidence. Our knowledge of cancer risks is constantly changing and may be more or less significant than current literature would suggest. Scientific knowledge about what puts us at risk for cancer evolves constantly. Keeping up with this kind of news helps you remain an “active” rather than a “passive” consumer. Never hesitate to raise questions with your health care professionals about your risk for cancer based on current evidence.
Engage in practices that reduce your risk of exposure to known cancer causing agents
We all look forward to the day when we will know for certain what causes cancer. Two very difficult cancers are largely, though not always, caused by lifestyle choices – lung cancer and skin cancer. You can lessen your risk of developing these cancers by not smoking or using tobacco products and by limiting sun exposure. Guidelines regarding screening for the most common cancers are constantly evolving. Check with your physician to determine how the most current evidence regarding screening for breast, prostate, lung and colorectal cancer may apply to you.
History is not destiny
If you have a family history of cancer, ask your physician what role genetics or other risk factors may apply to your particular health profile. Understanding “relative risk” versus “actual risk” marks an important distinction when dealing with genetic or heritable risk factors for cancer.
Know and trust your body and your instincts
See your physician with any unusual symptoms that do not clear up in two weeks. If you are unsatisfied or instinctively sense that something is wrong, seek another opinion.
The field of health care that deals with cancer is called oncology. The people treating cancer are chiefly medical oncologists, surgical oncologists, radiation oncologists, oncology nurses and oncology social workers. Cancer is many diseases with one thing in common: the uncontrollable growth and accumulation of abnormal cells. Cancer growth and development has so many phases that physicians use terms that specify where the cancer is (site) and the type of tissue involved. Because there are so many different types of cancer, it is vitally important that you understand your diagnosis and prognosis – a prediction of the probable cause and outcome of the disease – so that you can make informed treatment decisions.
Become educated about your type of disease and the treatments available
Rarely is there only one treatment option to consider. If you are emotionally or physically unable, ask a friend or family member to do the research for you. Consider that a high quality clinical trial may be your very best treatment option. Be sure to ask your physician about this option.
Be sure that you understand the stage and grade of your cancer
For most cancers, staging is based on a scale of 0-5 that identifies the size of the tumor and the extent of its spread. Grade compares the cancer cells characteristics to that of normal cells. These factors may determine treatment options.
Use credible and reputable sources of information
The National Cancer Institute; U.S. National Library of Medicine; American Cancer Society; American Society of Clinical Oncology; Cancer Care, Inc; or many of the site-specific cancer organizations. NCCS provides an online resource guide. You can also gain access to these resources by telephone, fax, or at your local library and/or on the Internet.
Write out your questions in advance of your visit to an oncology professional
Some physicians will let you submit questions in advance of your first visit to allow for a more focused discussion.
Investigate living wills and advanced directives
This ensures your wishes are carried out throughout the entire course of your life.
Take some time to do the necessary research
Proper research helps you make the choices that are best for you. Don’t let anyone pressure you into making an immediate decision about your treatment options.
The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.
The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.
Share Your Story
NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.
Together we can improve cancer care for survivors! Sign up to be the first to know about cancer policy issues and ways to take action