One of the best ways to begin making decisions about your health is to educate yourself.
Members of your health care team are very knowledgeable about the different aspects of cancer and will likely be your main source of information about your diagnosis and treatment. Here are some tips for communicating with your health care team about your treatment options:
Do your research. Once you know the type and stage of cancer, find out what the standard of care is for someone with your diagnosis. Ask your doctor or nurse to suggest reliable organizations, publications or websites that focus on the diagnosis or the recommended treatment. If you are unable to use the internet yourself or feel overwhelmed with the amount of information you are finding, ask a family member, friend, patient navigator or local librarian to help you. Use the internet with caution; there is a multitude of information online about various types of cancer and cancer treatment. It is important to educate yourself with credible sources and information that is specific to your diagnosis.
Work with a specialist. Doctors who specialize in treating cancer are called oncologists. For the best medical care, it’s important to work with an oncologist who specializes in treating your type of cancer. This is especially important if you have been diagnosed with a rare cancer. To find a specialist, you can:
- Ask your primary care physician for a referral.
- Get recommendations from friends, family members or other patients.
- Call your health insurance company’s customer service line and ask a representative for a list of local specialists in your network.
- Search online—many professional and cancer organizations provide searchable listings of cancer specialists. For example, the American Society of Clinical Oncology has a database of oncologists. Go to www.cancer.net and type “oncologist” in the search box.
Another option is to choose a cancer center known for providing high-quality patient care and then select a specialist at that hospital. Many patients choose this option even if they need to travel long distances for appointments. For a list of some recommended centers, see the National Cancer Institute’s list at cancercenters.cancer.gov or call 1-800-4-CANCER.
It’s important that you feel comfortable with and trust your doctor. If your preferred oncologist does not specialize in treating your diagnosis, they can still consult with a specialist about your treatment options.
Agree on the treatment goals. When your doctor recommends a treatment or procedure, make sure you understand the reason(s) why. For example, if you are getting chemotherapy or another cancer drug, is the goal to cure the cancer, control the cancer (shrink the tumor or keep it from growing) or relieve symptoms caused by the cancer? Let your doctor know if you have certain wishes or preferences with regard to treatment so these preferences can be taken into account. Your lifestyle and daily activities may also influence treatment recommendations.
Discuss the cost of your care. Research shows that many patients do not feel comfortable asking their doctors how much treatment is going to cost and many doctors do not normally bring it up either. If possible, it is important to find out the cost of your medications before starting treatment. Consider asking your health care team the following questions to better understand the cost of treatment:
- How much will my treatment cost?
- Is there a co-pay for each doctor visit and for each individual treatment? If so, how much is my co-pay?
- What does my insurance cover?
- Does my health insurance company need to approve my treatment plan before I begin?
- Do you offer payment plans?
- Can you refer me to financial assistance resources?
- Will my medication require a co-pay?
- Is there a less expensive option for my medication?
- Will my prescription cost be an ongoing or a one-time expense?
Your doctor may not know the answer, but they should be able to refer you to a social worker, pharmacist or hospital financial specialist who can help. If you can’t afford the treatment you need, financial assistance may be available to you. Some financial assistance resources are listed on the ‘Frequently Asked Questions’ chapter of this booklet.
Get a second opinion. Before you begin treatment, you may want to make an appointment with another oncologist to review treatment recommendations. No member of your health care team will mind if you seek a second opinion. In fact, many specialists encourage it and may even provide a referral.
If you are nervous about letting your doctor know you want a second opinion, tell them that you are very satisfied with the care you are receiving, but just want to make sure you are aware of all your options. It is important that you feel comfortable with any decisions made in regard to treatment options and getting a second opinion may help you make decisions about your medical care.
Find out how the treatment plan will affect your daily life. Cancer treatments are often given at a doctor’s office or hospital. However, many of today’s treatments can also be taken at home. Find out where you will be treated, how often you will receive treatment and for how long. Will you need someone to accompany you to appointments or to help care for you at home? Will you be able to continue your usual activities, such as working or going to school? Knowing such information ahead of time will allow you to prepare for changes to your routine.
Ask about possible side effects. Find out what side effects you can expect from your treatment and how your health care team plans to manage them if they occur. See if there is anything you or your health care team can do to prevent or reduce the chances that you will develop certain side effects. There are effective ways to prevent side effects such as nausea, vomiting, diarrhea, constipation and pain. It is important to advocate for yourself if side effects do arise during treatment. Do not be afraid to ask your doctor about the best ways to manage them.
Get the facts about reconstructive and plastic surgery. Some surgeries, such as those for head, neck and oral cancer, breast cancer or skin cancer, may affect your appearance. Therefore, you may want to ask your doctor about reconstructive/plastic surgery. Reconstructive/plastic surgery can often be done at the same time as your oncology surgery, so ask about this option as early as possible. A board-certified plastic surgeon can give you information about your options. To find a certified plastic surgeon, visit the website of the American Society of Plastic Surgeons at www.plasticsurgery.org and click on “Find A Surgeon.”
Learn about fertility preservation options. If you plan to have children in the future, or if you are unsure, find out whether the treatment your doctor is recommending could affect your ability to conceive. It is important to speak with your doctor about fertility concerns before you begin treatment. They may be able to select a treatment or technique that preserves your fertility or they may be able to refer you for sperm/egg banking prior to treatment. Doctors do not always discuss fertility preservation, especially if they want to begin treatment right away. If this is a priority for you, make sure to discuss your concerns with your medical team from the beginning.