10 ways to get better cancer care
Coping with breast cancer means dealing with doctors–sometimes, lots of them. While you’re swept up in a storm of emotions, you’ve also got a ton of information to absorb and specialists to see. Here’s how to work with your health-care team to get the best care possible.
1. Be gentle with yourself
2. Keep a cancer notebook
Buy a three-ring binder or journal to record appointments, treatment plans, your reactions to treatments and surgery, and your personal thoughts. Include plastic sheaths to carry your medical history, records and test results.
3. Choose a care partner
Think about whom you wish to accompany you to doctors’ appointments and treatments. You might want to consider a trusted friend or family member who is compassionate as well as level-headed to help you ask the right questions, record answers or follow-up on treatment results. Make sure this person is comfortable around doctors and hospitals.
4. Get the best referral
Your family doctor will send you to a cancer specialist, called an oncologist, who will conduct a series of tests
. If you’ve heard of a specialist in your area through family or friends, for example, ask your GP about that expert’s credentials. If you want to see that specialist, let your GP know.
5. Ask the right questions
Your oncologist will be providing you with important information about your diagnosis and treatment plan. Tell her you’d like to tape-record your discussion to listen to afterward. Or, have your care partner write down the responses. Here are some suggested topics of discussion:
· Ask your doctor to explain the results of diagnostic tests
in clear lay language
· For more tips, read the Health Canada-sponsored It Helps to Talk: How to get the most from a visit to your doctor
6. Make a strong connection
Your cancer specialist is doing her best to give you excellent care. But she sees hundreds of patients a year. So, how best to connect? Make eye contact when speaking or listening to your specialist. Are there photographs of family or pets on her desk? Ask about them. Share information about your family, hobbies and interests. Let her know how you feel. Are you anxious, scared, angry? Tell her. The more you can do to anchor yourself in her mind, the more likely she will relate to you, human to human.
7. Consider a second opinion
If after you’ve tried to make a connection with your specialist you still don’t feel comfortable with her, or you have doubts about the suggested treatment options, ask your family doctor for another referral. If you are located far from a major cancer centre, ask if there are other specialists in your area. Seeing another oncologist will either confirm which treatment is best for you or give you more options to pursue. For feedback on treatment options, call a breast cancer survivor/peer counsellor at Willow
8. Say thank you
Share all pertinent information–from your side-effects to your fears–with the health care team who’ll be treating you. Introduce your care partner to every member of the team. They should also share information with you about treatments and results and offer support. Whenever anyone treats you with respect or kindness, communicate your gratefulness. Most cancer health-care practitioners care deeply about their work and want the best for you.
9. Know your health-care team’s routine
Ask your caregivers how best to contact them with questions. Does your specialist only return calls at 4 p.m.? That way you won’t worry when he doesn’t call you back right away. How are test results communicated? If you prefer receiving results face-to-face, let them know. Find out the responsibilities of each team member so you know whom to call, for example, about your nausea during chemotherapy.
10. Speak up
If you’re not getting the kind of help or information you need, say something to as many members of your health-care team as possible. Or have a family member or trusted friend voice your concerns. Here’s how to do so effectively:
· Clarify the problem: Write down the facts. The clearer and more direct you can be, the more it is likely you will get results.
· Talk to your hospital’s patient advocate: Speak to a senior member of your health-care team or to the social worker who is part of that team. If you’re still not satisfied, contact the hospital’s patient advocate, patient relations manager or ombudsman (different terms for the same position) who will take an objective look at the situation.
· Keep your rage in check: You may have the right to be angry, but screaming at or threatening health-care workers is not acceptable. If you do lose your temper inappropriately, apologize when you’ve calmed down.
· Focus on getting the results you want: In dealing with genuine health-care problems, a combination of assertiveness and respect is most likely to get you the outcome you want.
· Follow up on your complaints: If you haven’t seen results within a day or two, bring up the problem again.