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Working with your healthcare team
Your relationship with your doctor and healthcare team is an important part of your cancer care. This relationship needs to be a 2-way street. Building a good relationship takes time and effort on both sides. People with cancer often develop a close relationship with their healthcare team.
Tips for talking to your healthcare team
Being clear and honest will help you to be an active partner in your care. It may take more than one visit to discuss all of the questions you have. It can also be hard to remember everything your doctor says. The following tips should help you work well with your healthcare team.
- Be open and honest. Tell your healthcare team how you’re feeling. Share any fears or concerns you have about starting treatment or about side effects so they can help you. Do not hold back information. Something that seems minor could affect your treatment or something you think is serious might be very easy to deal with.
- Tell the doctor how much you would like to know. Let your healthcare team know if they’re giving you too much or too little information. Tell them what you want to know and any needs or concerns you have.
- Sometimes loved ones want to know more about your cancer and treatment than you do. Let your loved ones know how much you want to know, and let your doctor know how much can be discussed with loved ones. It may be helpful to choose one family member or friend to talk to the healthcare team on your behalf. Having many people asking the same questions can make it harder to communicate with the doctor.
- Tell your healthcare team about your life outside the treatment centre, such as:
- your work and the amount of physical activity or mental stress it involves
- your home life (for example, if you live alone or have young children)
- your hobbies and interests
- any family problems, money problems or other issues (for example, if it’s hard for you to travel to and from the treatment centre)
- your goals or hopes during and after treatment
- any cultural or spiritual practices that are important to you
- Take notes during an appointment. You may even want to ask the healthcare team if it’s okay to record what they tell you. It’s hard to listen well and understand complex information when you’re worried or afraid. You may not hear or remember everything that was said.
- Bring a family member or friend to visits. They can help you remember what the doctor said and can give you emotional support.
- Ask for the meaning of unfamiliar terms and repeat back the information to make sure you understood it correctly. There is nothing wrong with not understanding something. If you feel embarrassed or do not understand what is said, say so. Unless you tell the healthcare team that you don’t understand something, they may assume that you do.
- Prepare a list of questions and take it with you to appointments. Remember, there is no such thing as a stupid question.
- Think of the most important questions you want answered first. If you don’t get all your questions answered, you will likely have other chances to ask them. Also, your doctor may not need to be the one who answers all your questions. Some questions can be answered by the nurse, the social worker or other members of the healthcare team.
- Keep track of your talks with the healthcare team. You can use a notebook, journal or computer to write down:
- questions and answers
- side effects such as pain, nausea or other symptoms
- test results
- names and phone numbers of your healthcare team, cancer treatment centre or pharmacy
- Take information that you find with you to discuss with the healthcare team. They can help you understand the information and tell you how it does or does not apply to your situation.
- Ask the doctor or healthcare team to suggest some reading material or places where you can look for more information. You can look at this information when you have more time or when you feel less stressed.
- Find out who to call if you have questions or something happens between visits. Some questions about symptoms can be answered over the phone, which may save time. Ask your doctor for an example of what things you should phone about during office hours and what would need an emergency call outside of office hours.
- Accept or realize that some things are just not known. There are often a lot of uncertainties with cancer.
- Try to avoid becoming angry or hostile toward the doctor or healthcare team, even if you feel frustrated or angry. People become defensive if they feel attacked and this can affect how they communicate with you.
Getting a second opinion
In most cases, after cancer is diagnosed, the doctor will discuss treatment options. In some cases, it may be hard to reach a diagnosis or you may have a great deal of fear, uncertainty and questions about your cancer and its treatment. You may want to get a second opinion (another doctor’s point of view). Sometimes doctors will suggest getting a second opinion if they’re unsure about your diagnosis or treatment.
Some people find it hard to tell their doctor that they’d like a second opinion, even though this is common and most doctors are comfortable with it. Doctors will often help you get a second opinion about your diagnosis or treatment plan.
If you’re thinking about getting a second opinion:
- Be honest with your doctor and let them know that you would like to see someone else before deciding on treatment.
- Ask your doctor to suggest other doctors you could consult.
- Ask for a referral from your doctor.
- Ask your doctor to give you a copy of your medical records, test results or even biopsy samples that will help the second doctor make a diagnosis.
Hearing what another doctor says may help you feel better and more confident about your treatment.
Sometimes people with cancer think about changing doctors. They may have trouble relating to their doctor or may want to see another doctor with more experience. Whatever the reason, it can be very hard to ask to change doctors.
If you have trouble relating to your doctor, you may want to try to improve the situation before changing doctors. You should:
- Be open and honest with your doctor.
- Tell the doctor that you’re concerned about how you are communicating with each other. Ask if you can discuss this and find a way to work together to solve it.
- Try writing a letter, if it is hard to tell your doctor face to face.
- Ask for help from your healthcare team. Your family doctor, oncology nurse, social worker or patient advocate may be able to suggest ways to improve communication. They can also let you know if the centre has a procedure or steps to follow for changing doctors.
- Talk to other people with cancer. They may be able to suggest tips to improve communication.
You may need to schedule a separate visit to discuss the situation with your doctor.
If you’re thinking of changing doctors, let your doctor know that you would like to see someone else. Try to handle the situation tactfully. Thank your doctor for what they have done. Tell them you appreciate all their help, but you want to try to find someone else who is better for your needs at this time.
Thanks to the incredible progress in retinoblastoma research made possible by Canadian Cancer Society funding, my son won’t have to go through what I did.
Together we can reduce the burden of cancer
Last year, we only had the resources available to fund 40% of high-priority research projects. Imagine the impact we could have if we were able to fund 100%.