Were you, a friend or family member, recently diagnosed with cancer?
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Your first email full of useful information and tools will be arriving in the next two days. If you have questions about what you find there, contact your personal cancer navigator; they are ready to answer any questions and connect you with resources.
Contact LIVESTRONG Cancer Navigation Services
Call 855-220-7777 or visit intakes.livestrong.org/cancersupport/
Call your health care provider right away if you experience pain or fever. Use words to describe how the pain feels such as “burning,” “aching” or “sharp.” Tell the provider how often you have pain. Also, keep track of what you have tried to do to relieve the pain and how well it worked. Share this information with the provider.
Here are more tips for working with your health care team.
Preparing for Your Appointments
Information to Share With Your Health Care Provider
- Concerns and things you want to know.
- New symptoms, side effects and pain problems.
- Current medications and dosages.
- Other treatments you have had such as acupuncture or massage.
- Current list of food supplements.
- Emotional concerns such as depression.
Always prepare for appointments with your health care team. Ask each team member what he or she wants to know from you during your meetings. Also, ask how the business office will handle billing and pre-approval of insurance coverage for tests and treatments.
Use a notebook, such as the LIVESTRONG Guidebook Planner and Journal, to keep track of your daily experiences. Write down questions that come up between appointments. Also, keep track of new symptoms you experience. Follow this guide:
1. Prepare your questions: Asking questions doesn’t mean you don’t respect your health care provider. You have the right to understand what is happening with your care.
You have an important role in developing your cancer care plan. If you can talk openly with your health care team, they will be able to work with you to create the best treatment plan. You can then feel confident about the health care you are receiving.
If you feel too ill or don't know what to say, ask a trusted friend, loved one, patient navigator or social worker to help you bring up concerns and questions during your appointment.
2. Prepare info about medications and dosages: Keep an up-to-date list of your medications and dosages. Include all vitamins, supplements and over-the-counter medications you take in your list.
3. Get an interpreter: Some people have hearing loss. Others speak a different language. If either of these is true for you, ask your health care provider to arrange for an interpreter during appointments.
Do not ask a child or teen to interpret because they are not able to accurately describe medical issues. If you need an interpreter, ask a nurse or social worker to set up this service.
Let your health care team know if there is anything you don't understand. Feel free to bring up concerns. Write down information you are given or specific instructions you need to follow as part of your care. You can also ask your health care team members to write down the information for you.
During Your Appointments
You may find it helpful to have someone take notes for you during appointments. If there is no one who can go with you, ask a nurse, navigator or social worker to help you. Many providers now allow patients to record their discussions. That makes it easy to go back later and listen to the information that was provided. Talk with your provider about any plans to record your meetings. Here are more tips:
Questions to Ask Your Health Care Provider About Treatment Options
- What are the best treatment options for this type of cancer?
- How long will treatment last?
- How often are treatments required?
- What side effects (both short- and long-term) could come with treatment?
- How will side effects, such as pain, be controlled or managed?
- Can this treatment affect fertility or cause changes in sexual functioning?
- Is it possible that this type of cancer will spread?
- What is the expected outcome (prognosis) for this type and stage of cancer?
- Is it possible to get a secondary cancer from the treatment?
- Is there anything more that can be done to help the healing process?
1. Review your list of medications and dosages: Keep your health care provider up to date on all of your medications and dosages. Some patients find that it works best to bring all of their medicine containers with prescription information to all medical appointments. This is especially true if you take medications for other problems such as diabetes or heart conditions.
Be sure to tell your provider about any allergies, side effects or reactions to medications you have had in the past. This information is very important when starting treatment with new doctors or during any visits to the emergency room.
2. Take notes: It can be difficult to remember everything your health care team tells you. This can be even harder if you’re stressed or not feeling well. Yet it is important to keep track of the information you are given such as how to take medications and when to contact your provider.
During Your First Visit With a Health Care Provider
Every health care provider has their own policies and procedures set up to handle patient needs. Ask about these during your first meeting with the provider.
What if you can’t reach your health care provider? There may be times when you have questions or need to speak with a health care professional between appointments. Ask how you can leave a message for your provider if your needs are not urgent.
Find out how emergency calls are handled if your provider is not available. In most cases, you will be told to contact a hospital emergency room or call 911 if you have urgent concerns.
How do you get your test results? Some providers will call you or have a nurse contact you. Others ask you to call them or a messaging service for test results. Be certain you understand what your health care provider wants you to do. This will help you avoid delays and missed information.
If you have questions or concerns about test results, contact your provider’s office. Because so many tests are done every day in a health care facility, mistakes can happen. On rare occasions, test results may be misplaced or even given to the wrong patient. Always feel free to ask questions to get more information.
What if you have questions about medications or side effects? Ask your health care provider what to do if you have side effects caused by medications or treatments. Learn about the medications you take. Find out why you are taking each of them. Discuss how to contact your provider or get other medical help if problems develop.
Some medications can interact with others. There is also the possibility of an allergy or a reaction to certain medications. Give each of your health care providers and pharmacists a record of your known allergies and reactions to medications. Find out what to do if you have a reaction.
What if you need to share or keep medical information confidential? The Health Insurance Portability and Accountability Act (HIPAA) requires that health care providers protect the privacy of patients. The provider must give each patient a written explanation of how they meet HIPAA rules.
Each of your health care providers will ask you to read and sign the HIPAA form before you begin working with them. You must list the names of the people with whom you are allowing your health care team to share medical information. Ask questions before signing the form. Find out who else the provider will share your information with such as your insurance company.
Getting Another Medical Opinion
You have the right to ask for a second or third medical opinion (or more). Another opinion may help you make better decisions. You also have the right to change members of your health care team. Tell the health care provider that you respect his or her opinion, but you would like to get another opinion before deciding what to do.
There is no need to feel guilty about asking for another opinion. This is an important patient right. Many providers suggest that patients consider additional medical opinions before making health care decisions.
To avoid out of pocket expenses, you may need to get approval from your insurer before meeting with another provider.
If you don't know where to go or how to get another opinion, ask your health care provider, a social worker or nonprofit cancer organization for help. Or you can contact the Navigate Cancer Foundation.
Resolving Problems With Health Care Team Members
Sometimes your personal style may not be a good fit with a member of your health care team. If this happens, talk with someone you trust about your concerns. Consider whether it is possible to improve the situation. It may be that the health care provider has excellent medical skills, but there is a problem with communication.
Look for a way to discuss your concerns with the health care team member. That may improve things. If you are uncomfortable talking directly with him or her, ask a loved one, friend or social worker to help you. Many health care facilities now have patient advocates on staff. Their job is to solve problems between patients and health care providers.
If a problem can't be resolved, you may need to consider changing medical providers or using a different health care facility. It's important that you trust your health care providers and that you can work as a team during