You may not know as much about cancer and its treatment as your healthcare provider does, but you and your family are the only ones who can decide what is best for you. Remember that you are a part of the team and you have a part to play in your care.
Most healthcare providers want you to ask questions. You may not know which questions to ask. And it's often easy to forget questions you or your family may have. So you may want to write your questions down ahead of time. It's also hard to remember everything you’re being told at each visit. Be sure you or your family member writes down what your healthcare provider tells you. If your healthcare provider says it's OK, you may want to record the conversation.
Ask your healthcare provider to show you where your cancer is, what will be removed, what will remain, and how the treatment will work. Being able to picture your cancer and how the treatment will affect it can be a powerful aid as you make decisions.
Cancer is a complicated disease, and different people have different ways of understanding what is happening to them. Don’t be shy to say, “I don’t understand. Would you please explain it to me again?” Or if needed, don’t be afraid to call back and ask to speak with your healthcare provider or nurse again.
Don’t tell your healthcare provider or nurse that you’re doing just fine when you’re not. Your healthcare provider and nurse need to know about any new symptoms and changes in how you feel. Tell them if you’re having pain. Let them know if you’re using any other treatments along with your healthcare provider-prescribed cancer treatment.
Keep in mind that some alternative treatments such as nutritional therapies can interfere with standard cancer treatments. Giving your healthcare providers a truthful picture of what complimentary therapies you are using, or thinking of using, will help make sure that your cancer treatments will be safe. All this information is important and will help your team manage your treatment program in the best way possible.
Your partner, a relative, a friend, or an adult child can be helpful during these visits. Your partner can be a valuable set of ears and may even ask questions you didn't think of or remember. Talk before the visit so that you can work together as a team to make sure you know what questions or problems you want to talk about. Your partner can be your advocate, asking the tough questions that you’re not comfortable with. Having a partner with you is especially important if you’re taking medicine or if you’re anxious or upset. You may be asked to sign a medical release form granting your family member or friend the right to talk about your treatment or other concerns with your healthcare team. That is done to protect your privacy. Talk with your partner right after the visit about the information you received. While it is fresh, review the information to make sure you both heard and understood the same things. Take notes and write down other questions you may have. You can also record the conversation, but make sure to ask the healthcare provider if it is OK to do so.
It's important to keep in mind that your healthcare providers are doing everything they can to help you get well. If you are upset, try to separate the anger you have about your diagnosis from whether or not you are disappointed with your healthcare provider. And if you are disappointed with your provider, don't be afraid to say so and get another opinion.
Often you will have more than one healthcare provider. Each one should know what is happening to you. Make a list of all your healthcare providers' names, specialties, phone numbers, and addresses. Give this information to each person on your list. This will make it easier for them to consult each other, share reports and medical records, and talk about important issues about your care. You may have to sign medical releases giving them permission to share information and discuss your case with each other. This is done to protect your privacy. When you visit one healthcare provider, ask if they have talked with your other providers or received their reports.
Your relationship with your healthcare provider is an important one. And like all relationships in life, problems may arise. But talking about them can help. Be clear and specific when you state your concerns and give examples. Listen to your healthcare provider's response and try to understand their perspective. Offer ways on how to prevent these problems in the future. If you are still unhappy with your relationship, you may decide to explore other options, such as switching healthcare providers. If this happens, respectfully tell your healthcare provider of your decision and the reasons. Ask for their help in transferring your care to your new provider. Your primary care doctor may help you with this as well.
Taking an active role in your care will help you get the information you need and ensure that everyone is working with you to fight your cancer. Not everyone is comfortable doing this. For some, it takes time to learn how to be an active team member. You may be surprised at how good you and your partner will get at this over time.
Caregiver’s tip: Be an advocate for your loved one. Informed patients and families often have better outcomes.