When diagnosed with cancer, you deserve the best possible care through your diagnosis, treatment, recovery and long-term follow-up. Ensuring Quality Cancer Care, a report of the Institute of Medicine and the National Research Council, found that a substantial proportion of cancer patients do not receive the best quality care. The report recommends systems changes to improve the likelihood that more people will receive high-quality cancer care in the future. NCCS is working very hard on a national advocacy agenda to assure that all Americans can access this care.
Meanwhile, here are some steps that YOU can take to obtain the best care NOW.
How Do I Find Experienced Care Providers?
Choose a doctor with experience treating your type of cancer. Such a doctor will often be a board-certified oncologist, but other types of health care providers may specialize in the treatment of certain types of cancer. For example, urologists often treat prostate cancer and dermatologists treat many skin cancers.Doctors involved in research may be able to offer you promising new treatments and provide access to clinical trials and other experimental programs.
Oncology researchers have devised many treatment plans and protocols based on the best available scientific evidence. Their use helps to ensure that you receive the best care supported by the latest scientific advances. Check to see if your health care providers are using the guidelines and protocols that are available for your situation.
If you need surgery or care that is considered “high-risk” – for example, surgery for cancer of the pancreas, esophagus, or for some types of lung cancer – consider getting care at facilities/hospitals with extensive experience in such procedures because they tend to have better outcomes.
How Do I Select and Evaluate My Doctor or Specialist?
By extension this also relates to your nursing care and the hospital or facility at which you will receive treatment.
Research the credentials of the professional(s) that will be handling your care. Check their board certification(s) in the Official Directory of the American Board of Medical Specialties (ABMS) (available in the reference section at most libraries) or online at www.abms.org. The American Society of Clinical Oncology (ASCO) has a website especially for consumers at www.cancer.net, which features an option to find certified oncologists by name, location and specialty (click on ASCO Resources, then Find an Oncologist).
Check with your State Medical Board – listed with the Federation of State Medical Boards at www.fsmb.org – or your local medical society.
Ask about their education, specialty training and experience – in years and number of procedures or cases similar to yours.
Ask for referrals to other patients with a similar diagnosis who have given permission to be contacted. Although it’s tempting to ask a relative, neighbor, or friend for a referral, it is always best to do your own research to find a physician and/or cancer center that is suited to your illness and situation.
Call the Cancer Information Service toll-free at 800-4-CANCER (800-422-6237) for a listing of the National Cancer Institute’s (NCI) designated Cancer Centers.
Seek a second opinion. Ask your physician for a referral to another specialist, or do your own research to find one.
Other things to consider when making this decision: your support system (family, friends), which may affect location, transportation, and access to other supportive care services such as counseling, rehabilitation and support groups.
How Do I Effectively Communicate with My Health Care Team?
Evaluate the health care team’s responsiveness to your questions and their ability to effectively communicate about your diagnosis, treatment and other concerns.
You are entering into a partnership with this team. Ask who will coordinate your care–surgeon, medical oncologist, radiologist, or other specialist.
Ask about accessibility. Ask for a contact person (and phone number) of a case manager, nurse, or nurse practitioner who can speak with you during non-business hours.
Be sure that you or your designated advocate understands the medical terminology and the significance of scans, blood counts, other lab tests, and pathology reports.
Ask about follow-up office policy: How frequently will you be seen? where (in office, by phone)? when will lab tests and other results be reported to you (immediately, within a week)?
Understanding Your Diagnosis and Treatment Plan
Your doctor should tell you the kind of cancer you have, your prognosis and what you can expect from treatment. Your doctor should describe options for treatment and clearly set forth a treatment plan for you.
Understanding what cancer is and how your type of cancer can be treated will help you communicate with your health care providers and make decisions with confidence. Reliable information on cancer, its treatment and local supportive and treatment programs is available at no cost.
Cancer-related treatment usually consists of surgery, chemotherapy, radiation or a combination of these therapies. Newer, more targeted treatments for some diseases may have fewer side effects. Other new and emerging treatments – including hormones; biologics (cellular, protein and enzyme levels); immunosuppressors and others – are being researched in the laboratory and within clinical trials.
Be sure that you understand all of your treatment options before starting any therapy. In most cases treatment doesn’t have to start immediately after diagnosis. Don’t rush to a decision, or let anyone else rush you. Your first treatment usually offers the best chance for cure, so it is important to know all of your options and the possible benefits and risks before that first treatment.
The National Cancer Institute, with input from patient advocates, lists the following questions for consideration before beginning treatment:
Is there any evidence the cancer has spread? What is the stage of the disease?
What are my treatment choices? Which do you recommend for me? Why?
What new treatments are being studied? Would a clinical trial be appropriate for me?
What are the expected benefits of each kind of treatment?
What are the risks and possible side effects of each treatment?
Is infertility a side effect of cancer treatment? Can anything be done about it?
What can I do to prepare for treatment?
How often will I have treatments?
How long will treatment last?
Will I have to change my normal activities? If so, for how long?
What is the treatment likely to cost?
Understanding the Role of Clinical Trials in Quality Cancer Care
High-quality cancer clinical trials are an important component of quality cancer care. Before a new treatment method is made available to the public, it must undergo a clinical trial. Clinical trials, also called cancer treatment or research studies, test new treatments in people with cancer. Clinical trials test many types of treatment such as new drugs, new approaches to surgery or radiation therapy, new combinations of treatments, or new methods such as gene therapy.
Clinical trials are strictly monitored and carefully evaluated to test the therapy’s safety and efficacy (effectiveness). Any new treatment must successfully complete three phases of trials (see www.cancer.gov/clinicaltrials for a complete guide and description of Phase I, II and III trials) before the federal Food and Drug Administration (FDA) approves it for general use.
It’s important to know that every patient in a Phase III trial receives either the standard treatment for a specific cancer or the treatment being investigated. The common misperception that some patients receive placebos has kept many patients from participating in cancer clinical trials.
Is it right for me?
Of course, there is no guarantee that a new treatment being tested or a standard treatment will produce good results. New treatments also may have unknown risks. In the past, clinical trials were sometimes seen as a last resort for people who had no other treatment choices. Today, patients with common cancers often choose to receive their first treatment in a clinical trial.
How do I decide?
A number of excellent publications and Websites address this question. Reference the Patients section of the Coalition of National Cancer Cooperative Groups at www.cancertrialshelp.org. Before making a final decision, review the National Cancer Institute booklet If You Have Cancer: What You Should Know About Clinical Trials or check the information and questions at www.cancer.gov/clinicaltrials and click on Participating in a Trial: Questions to Ask Your Doctor.These important questions must be asked and answered to your satisfaction before you can make this decision. If you agree to participate, you will receive a copy of the written description of the trial. You will also be provided with an informed consent document that you must sign, indicating that you understand the trial and what will be required to participate.
Insist on Comprehensive, Coordinated and Continuous Care
Good cancer care involves doctors, nurses, social workers and other providers working as a team throughout your care.
Make sure that one member of your medical team is designated as your advocate to coordinate your care and guide your progress throughout treatment.
If you experience pain or symptoms such as fatigue or nausea, ask for assistance. Effective treatments are available for many of the symptoms of cancer and for the symptoms caused by cancer treatment.
Psychological counseling, social services and rehabilitation are among the support services that should be available to you. Maintain contact information to access the support you may need.
Demand a Lifetime of Excellent Care
You should feel comfortable asking questions and talking to your medical providers. Make sure they listen to you and respect your point of view. Your decisions and your dignity should be respected.
If you need assistance in finding care or alleviating medical costs, you may find help through support and volunteer groups such as Cancer Care, Inc., and the American Cancer Society.
If your doctor tells you your cancer is incurable, ask questions. Even if a cure is not possible, there may still be treatments that can prolong life significantly, as well as procedures to reduce pain and other symptoms. In fact, most symptoms associated with cancer care and treatment can be managed well. This is one area where your advocacy may require persistence as these symptoms vary from individual to individual.
Sometimes, in holding out hope, either doctors or patients may insist on very aggressive or controversial treatment when there is little chance that the treatment will prolong life. The option of hospice care may be overlooked, but should be considered because it can often offer individuals dying of cancer comfort and resources beyond what doctors and family alone can provide.
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