The first step in getting answers is being brave enough to ask questions. Research shows that many patients hesitate to ask questions when they’re at the doctor’s office. This can lead to confusion, unexpected surprises, and decision regrets later on. One of the most important steps in managing your care is asking your health care team questions AND understanding the answers.
Here you will find a few questions to get you started. You may have other questions, as well. Since each person’s case is unique, these questions should be viewed as a starting point in communicating with your health care team, rather than a complete list. Mark the questions you plan to ask in order of priority, in case you run out of time. You can even make a copy of the questions you plan to ask, and email them in advance or give them to the doctor or nurse during the visit.
Bring someone with you that can write down the responses to your questions or ask permission to record the answers so you can focus on communicating with your doctor. If there is something you don’t understand, don’t be shy and ask for clarification!
Diagnosis: When You’re Told You Have Cancer
- What type of cancer do I have? Where is the cancer located?
- What are the risk factors
- What is the stage of the cancer? What does this mean? How is staging used to help decide the best type of cancer treatment?
- Has the cancer spread to my lymph nodes or any other parts of my body?
- What does my pathology report tell us about the cancer? How can I get a copy of my pathology report?
- Can you explain my pathology report/ laboratory test results?
- Will I need other tests or procedures before we can decide on treatment? What will we learn from these tests?
- What preparation is needed for these tests, if any? Where do I need to go for these tests?
- When and how will I receive test results?
- Should I think about genetic or genomic testing? Will my cancer be tested for biomarkers or genomic alterations and how will this affect my treatment plan?
- Do genetics play a role in this type of cancer? Are my family members at risk?
- What resources do you recommend so that I can learn more about my cancer and next steps?
Treatment Planning: Understanding Your Options
- What are my treatment options? What are the risks and benefits of each option?
- Am I eligible for any targeted cancer therapies?
- Which treatments or combination of treatments do you recommend for me? Why? What is the goal of this treatment?
- What are the short and long-term side effects of this treatment? How are these side effects treated? Is there anything I can do to be proactive and prevent or manage the side effects?
- Will I lose my hair? Will the treatment hurt? Will I have any scars? Do I have an option for placement of the scar?
- Where will treatment be done? Hospital? Outpatient clinic? Place near my home?
- What is the expected timeline for my treatment plan? How long do I have to make a decision before I begin treatment?
- Do I need a family member or friend to come with me to treatment sessions?
- How will this treatment affect my daily life? Will I be able to work? Exercise? Perform my usual activities?
- Could this treatment affect my ability to become pregnant or have children? If so, can you recommend a fertility specialist or reproductive endocrinologist before starting treatment? (You can find a list of additional questions to ask about fertility at the end of this chapter.)
- How much will I have to pay for treatment? What will my insurance cover? Who can I speak to about costs of care and insurance concerns?
- What clinical trials am I eligible for? Where are they located? (For a complete overview of clinical trials and additional questions, please refer to Clinical Trials chapter.)
- I am interested in getting a second opinion. Can you provide a recommendation?
- Is this type of cancer caused by genetic factors? Are other members of my family at risk?
- How will we know if the treatment is working?
- Will I need additional tests and follow up during my treatment? How often?
- What symptoms or side effects should I expect? What should I tell you about right away? Is there anything I can do to help manage the side effects?
- Who should I call with questions or concerns during non-business hours?
- Are there any lifestyle changes I should make during treatment?
- Do I need to change what I eat during treatment? Is there anything I should stay away from?
- What kind of exercises can I do? How often? Are there any limitations?
- What support services do you recommend for me? My family?
- Can you recommend a social worker to help locate support services?
- Can you recommend a support group where I can talk to another cancer patient or thriver?
- If I start to feel overwhelmed or depressed, can you suggest a health care professional I can speak to?
After Treatment: Follow-up Care
- What is the chance that the cancer will come back? What specific signs or symptoms should I watch for?
- How long will it take for me to get better and feel more like myself?
- What long-term side effects or health issues are possible based on the cancer treatment I received?
- What follow-up tests will I need? How often will I need them?
- Are there any lifestyle changes I should make to be healthy after treatment?
- Do I need a special diet or supplements after treatment?
- What kind of exercise should I do now? Are there any limits on what I can do?
- Who will be managing my follow-up care? Are there other doctors I should see for follow-up care?
- How do I get a treatment summary and survivorship care plan for my personal records?