Being told that you or a loved one has cancer is frightening. You probably want to learn about the disease, treatment options, and much more. A good place to start is with a list of questions to ask your doctor and care team.
Matthew Matasar has helped guide many people and their families through the anxiety of learning about a cancer diagnosis. He is Regional Care Network Medical Site Director at MSK Bergen, and specializes in caring for people with lymphoma. He is also an instructor at MSK’s Communication Skills Laboratory, where he trains doctors, nurses, and care team members on how to better understand the needs of people with cancer and their families.
Each person’s experience with cancer is unique, and different types of cancer present their own challenges. However, this checklist of questions, along with follow-up questions and insights from Dr. Matasar, is intended for anyone who has recently been diagnosed with cancer.
1. Where is the cancer in my body?
Dr. Matasar says that it’s important that your doctor clearly explain the kind of cancer you have and how advanced it is. These factors help determine your treatment plan and may influence the likely outcome.
2. Are you sure it’s cancer and that it’s this specific type of cancer? Should my test results be reviewed by an expert pathologist?
Dr. Matasar advises that the accuracy of a cancer diagnosis is very important. These are usually done by pathologists (doctors who specialize in diagnosing disease). In some cases, a second opinion by a different pathologist may result in changes to the diagnosis. Also, in many types of cancer, additional testing can help clarify the diagnosis or even guide the choice of treatments.
- Were the test results examined by a general pathologist or one who specializes in cancer?
- Should I get a second opinion from another pathologist?
- Do I need more tests? If so, what are they?
3. Do I need treatment, and what are my options?
Dr. Matasar suggests asking if there is a generally accepted treatment for the cancer, called the standard of care. That can lead to other important questions.
- Do I need to start treatment immediately? Is this an emergency or do I have time to consider my options?
- If more than one treatment might be an option, how should I choose between them?
- Should I get a second opinion from an expert in this type of cancer?
- What is the impact of COVID-19 on my course of care? (Dr. Matasar recommends getting the COVID-19 vaccine and appropriate boosters. Learn more about COVID for patients and caregivers.)
- Should I have genetic testing to see if a more personalized treatment is available?
- If I am planning on having children, what do I need to know about fertility preservation?
- Should I consider a clinical trial that investigates a potential new approach to treatment?
4. What should I tell my family and others?
Dr. Matasar says that while everyone has personal considerations about what to tell people, generally speaking, the only thing harder than having cancer is having cancer all alone. Being able to talk with family and friends about what you are going through is really helpful.
- Do I have a responsibility to tell my family, my friends, or my employer?
- What resources are available to help me learn how to talk to people in my life about cancer?
- How do I talk to my children, especially young children, about my condition?
- Am I at a higher risk of this cancer because of my genetic background? Should my family members consider being screened to see if they are at a higher risk?
5. What’s my long-term outlook?
Dr. Matasar suggests three methods for beginning the discussion with your care team about your outlook, which is also called prognosis:
- If there’s a room of ten people like me, what’s likely to happen to those ten people?
- What’s the best-case scenario for me? What’s the worst-case scenario? What’s the most likely scenario?
- In those scenarios, what will my life look like? How active will I be? Will I feel good? Will I be able to work or do the activities that I most enjoy? Beyond how long I may live, what will my quality of life be like?
6. How is this likely to affect me and my family financially?
Dr. Matasar says it may be difficult to answer this question immediately after diagnosis while a care plan is being mapped out. But your doctor may have good insights based on experience with other patients. Also, Dr. Matasar says that financial aid may be available, including help from philanthropic organizations with patient relief funds and pharmaceutical companies that offer copay assistance programs for many medications, among other options.
This article was originally published on December 17, 2019. It was updated on April 1, 2022.
Back to top