When You Have Cancer: Building Your Health Care Team
Learning that you have cancer is devastating. But today many kinds of cancer are treated as a chronic illness. Living with your illness can be much easier with the help of a health care team. They can help you manage your treatment and care, and they are a source of information and support. Who's on that team?
The Doctors and Surgeons
After you've been diagnosed, your doctor will refer you for treatment and help to maintain your quality of life. Before beginning treatment, one of those referrals should be to a cancer specialist for a second opinion. Ellen Carr is a care manager for cancer patients at the University of California San Diego Medical Center. Carr advises that your doctor might refer you to many doctors - a surgeon to remove the cancer, a cancer doctor for chemotherapy or cancer-fighting drugs and a radiation specialist for radiation treatment. Who you see depends on the cancer you have and the treatments you need.
Care Managers to Coordinate Care
It's tiring, frustrating, and overwhelming to schedule and keep lots of doctor appointments, especially when you're scared or not feeling well. You may be able to get the help of a care manager from the place you get treatment.
A care manager can be a nurse specializing in cancer or other areas, social worker, health care advocate, or even a family member you trust. If your treatment facility is small, your care manager could be a receptionist or medical assistant, according to Carr. Bigger facilities usually have a full-time care manager.
Sometimes nurses who act as care managers are called "nurse navigators." They help you navigate, or work your way through, the health care system. Nurse navigators or care managers usually work in university or community hospitals. But, more doctors' offices and cancer centers are hiring nurse navigators. Ask if there is a nurse who can serve as your care manager during your treatment.
But "the concept of care management is not universal - it doesn't exist in all comprehensive cancer centers," says Louise Knight, director of the patient and family services program at the Johns Hopkins Kimmel Cancer Center. Ask if there is someone to help you coordinate your care, your visits, and your health care team. Ask who can help you with financial matters.
Social workers help patients through the system at the Kimmel Cancer Center, although nurse case managers work with patients who come in for bone marrow transplants. Others, such as those in the financial office who deal with insurance companies, also help.
At the University of Texas MD Anderson Cancer Center, nurses and a social worker are case managers who "work closely with a patient's health care team to provide a seamless continuum of care - physical, financial, legal, mental, emotional, and spiritual," says Donna Ukanowicz, the center's case management director.
Case managers are provided to both inpatients and outpatients if they have a special need. One such need may be an illness that requires care in addition to the cancer, according to Ukanowicz.
Other Help Offered by Care Managers
Besides coordinating care with your health care providers, care managers can also:
- Find out what what types of treatments and tests your insurance company pays for
- Make sure your doctors have everything they need before they meet with you, including your complete medical files with all test results and medical history files
- Sit with you while your doctor explains your diagnosis and treatment plan, and go over the information afterward
- Answer any questions you might have after you leave the doctor's office (Source: Oncology Nursing Society)
Usually, one visit with the doctor is not enough, especially if you're upset. You need to fully understand and remember all the important and complicated information you'll hear about your illness and treatment. Care managers help you make sense of what the doctor tells you.
Other Team Members
Other people can play a major role in your treatment, too. Mental health professionals can help you handle the stress of living with cancer. They may be social workers, psychologists, or psychiatrists. Pain specialists, nutrition experts, and physical therapists can help you maintain your quality of life and address problems related to your illness and treatment.
Having professional and personal support during cancer treatment can help you through a trying time. Don't be shy about asking for help managing your care.
Tips for Doctors' Visits
While a care manager helps, you also must be prepared for your doctor visits. You'll want to make sure you get your questions answered and have important information available for the doctor. Michelle Schneider, nurse coordinator for the cancer service line at Alegent Health in Omaha, Nebraska offers these tips:
On your first visit to each new doctor, take:
- All your insurance cards
- Names, addresses, and telephone numbers of emergency contacts
- Name, address, and telephone number of your family doctor and local pharmacy
- Your surgical and medical history
- A complete list of medications you are taking, including dietary supplements and herbs, along with the names and dosages
- The dates, locations, and results of all doctor visits, tests, or x-rays
- A copy of your pathology or radiology reports. A new federal law, the Health Insurance Portability and Accountability Act, might make it hard for doctors to get these records from other doctors' offices
- A list of all your questions
Bring someone with you to your doctor visits. This person can take notes and help you understand and remember what the doctor said. Before you leave the doctor's office, find out what you need to do next. Maybe it's making your next appointment or finding out when to call for test results.
Keep your family doctor informed. Make sure your family doctor gets copies of all doctor and lab reports, test results, treatment plans, etc. You want all your medical records available in one place if you need them later.
Speak to the same person each time. If you don't have a nurse navigator or care manager you can call for information, the office manager or secretary usually will be able to help you. Get the name of the person you are talking with and ask for the same person each time you call.
AARP Resources
Preventing and Controlling Cancer
Regular screenings and tests can help find cancer early. That
makes treatment easier and more likely to succeed.
Dealing with Pain
Talking to your doctor about your pain can help you get
relief.
Complementary and Alternative Medicine
It's important to do your homework and talk to your doctor
before choosing complementary or alternative treatment.
Additional Resources
Oncology Nursing Society
Information on the emotional, financial, and family impact of
cancer.
National
Cancer Institute
Descriptions of the Different members of your health care team
and how they can help you.
American Cancer Society
Definitions of different health care professionals who provide
cancer care.
Books
Find these books online at Barnes & Noble.com
" Comprehensive Cancer Care: Integrating Alternative, Complementary, and Conventional Therapies,", James S. Gordon, Sharon Curtin, Perseus Publishing, June 2000
" Ensuring Quality Cancer Care,", Maria Elizabeth Hewitt (editor), Joseph V. Simone (editor), Institute of Medicine Committee, National Cancer Policy Board, National Academy Press, September 1999
