You’ve got cancer, and you’ve got questions, and yet there’s something that happens to many of us, entering through the doorway of a doctor’s office that wipes our mind blank of all the inquiries we’d thought of before the appointment.
The first appointment especially can be an overwhelming and scary experience. Sarah Murphy, a licensed therapist who’s worked with breast and ovarian cancer patients for nearly 20 years, says going in with a list of questions prepared to ask your oncologist (as well as a note pad or recording device to note their answers) can help make the experience feel more manageable.
Your first appointment will not be your last chance to ask questions. Cathy Spagnoli, a breast cancer nurse navigator at Northwestern Medicine, says that whether you have questions about treatment options, insurance, contacting a social worker, or simply where to park for surgery, the hospital staff and oncology support team should be happy to answer all of them, every step of the way. “Each part of [your] journey could bring new questions. We tell people knowledge is power because it takes away the fear of the unknown,” she says.
Below, we’ve compiled a list of suggested questions to ask at your first doctor’s appointment, and why these questions might be helpful for you, with input from medical experts, nonprofit organizations, and fellow members of the Jadey community. (And way below is a printable list of all these questions with space to write responses.)
1. What is the type of cancer I have? Can you write it down?
Stephanie Kowalik, a senior registered nurse in clinical trials at the Masonic Cancer Center at the University of Minnesota, suggests asking this as a basis for understanding what your oncologist is targeting treatment-wise.
Ask them to write it down for you, and ask for copies of your pathology report. This can help you assess if you’d like to get a second opinion or do any research yourself (Spagnoli cautions if you do want to research yourself, stick to reputable sites like the National Institutes of Health or the American Cancer Society).
2. Has it spread beyond the primary site?
How far the cancer has spread can be indicative of its stage and severity. We suggest asking this so your oncologist will explain how you can better manage your expectations for treatment. Plus, this is helpful information to have if you decide to look for a second opinion.
3. What are my treatment options?
As Kowalik explains, there’s typically a variety of different treatment options; your oncologist has likely chosen the most effective option based on a myriad of factors, but it’s still helpful to know the range.
She suggests asking questions like, “what are all of the available options in terms of standard of care treatment?” and “why do you want to use this combination of medications as opposed to another?” These require your doctor to explain their decision-making, to make sure you have a good understanding of how they came to their conclusion to know why this option is likely your best bet for the smoothest treatment possible.
4. What are the side effects of each treatment option? Are they temporary or long-term?
This can help you manage your expectations of the types of symptoms you’ll feel from treatment, and plan for any life changes you’ll need to make as you go through it. Spagnoli recommends asking a question like “what are the pros and cons of each treatment option?” to help you feel more informed and confident in whichever treatment you pursue.
Treatments can affect things in the short-term, like hair loss and fatigue, and in the long-term, like fertility and neuropathy. It might be helpful for you to ask about effects in both the short-term and long-term, and to ask if there’s anything you can do to prepare for or prevent them. And, if you have a grasp on the expected side effects, you’ll know later on that if you’re experiencing something they haven’t prepped you for, you might want to ask about it.
5. If applicable, what are my surgery options?
Some cancers may be treated with surgeries, sometimes alongside treatments like chemotherapy and radiation. If your doctor suggests surgery, you might want to ask about the different options, if there are any that are less invasive, and about the timelines and recovery for each of these.
6. What is the goal of treatment? How will I know if it’s working?
Spagnoli says talking about the intent of treatment is also important for managing expectations and understanding exactly how the treatment will be targeting your specific type of cancer. Depending on the stage of your cancer, you may find it beneficial to ask your oncologist what the goal of treatment is. Is it to eradicate the cells, control the spread, or to provide palliative, or quality of life care? And asking questions about how your team will monitor the effectiveness of treatment helps to give you a sense for what to expect in terms of regular scans, biopsies, blood tests, or other diagnostic methods.
7. How long will treatment last? What will happen after treatment? What types of follow ups will I need?
These are important questions to ask to understand what the longer-term picture looks like for treatment, and if there will be medications, therapies, or follow up tests or imaging/scans that will continue for a period of time (and if so, for how long).
Similarly, you might want to ask about timelines. Ask: how often you’ll have to come in, how long each session will take, how long recovery will take, etc. You’ll need to plan your life around treatment, so it’s important to have a grasp on the time commitment this all will take, both while you’re in it and after.
8. Are there any clinical trials available?
As a nurse who works primarily in clinical trials, Kowalik suggests asking your doctor if there are any clinical trials available that might be able to offer better treatment than the standard of care options. “A lot of people tend to think clinical trials are scary and unmonitored and unregulated, and that can’t be farther from the truth,” Kowalik explains. “Clinical trials are often the first line of treatment as well.”
9. Will I be able to go about my daily activities? If not, can I expect those abilities to return? When?
This is a crucial question for understanding and planning how your life will change during treatment. You might want to ask about travel, being in crowded places, taking care of children, and if you’ll be able to work. This will help you begin to understand how treatment might affect your day-to-day life. It will also help you plan what support you might need and how your support system can help keep your life moving when you might not be able to do everything yourself.
10. What do I need to know about fertility? What about sex?
These are two topics that are important to many of us, that doctors are also hesitant to bring up. If you're interested in fertility preservation (Jadey's guide here), you may need to make some plans more quickly. And with sex, there might be new habits and practices to keep everyone safe.
11. Are there any specific lifestyle changes I should make to improve my health during treatment?
You may find it helpful to ask broadly if there is anything you should be doing or not doing. For example, do you need to avoid certain foods, or follow a specific diet? What forms of exercise are safe and recommended for you during treatment? Your doctor can help provide strategies for taking care of yourself to make your treatment more effective and smooth.
12. Do I need genetic testing? Should my family do this as well?
Your doctor might begin the appointment by talking about your history, family health information and other background information, and you might want to ask them about genetic testing, to see if you, or your family should be aware of any inherited cancer risks.
13. Who will my care team be? Do you provide any mental health services?
Kowalik says your care team can be very multidisciplinary. It could include a medical oncologist, a surgical oncologist, a radiation oncologist, nurses, social workers, and more. It’s helpful to ask upfront who will be caring for you throughout this process, and also asking about mental health care that your hospital might provide. Many cancer care centers have oncology social workers who can help connect you with resources in your community like therapists, counselors, and support groups.
14. Who should I contact if I have more questions?
Spagnoli says this is one of the most important questions to ask. In her role as a nurse navigator, her main job is to guide patients through this journey, answer any questions they have throughout and connect them with any resources they need. It’s important to know where you can direct your questions, because, even if you came prepared with a list, you still may not have remembered everything, and new questions can pop up at any time.
We also suggest asking about who you can contact with urgent questions. Questions can still come outside of business hours, and Kowalik says most clinics have a triage number, so it’s a good idea to ask about your hospital’s system for getting these questions answered after hours.
15. Is there anything else I didn’t ask about that you think would be important to know?
This is a great last question, and can oftentimes spark the oncologist or nurses to give you a bit more information.
Remember, you don’t have to process it all at once
While bringing a list like this can help, this is a lot of information. You might be scared and in shock, and you’re hearing about all these ways your life is going to change. It can be easy to put pressure on yourself to remember and process and plan everything in the moment. You don’t have to. Try to be present, and listen as best as you can. If you missed something, your care team is there for you at every step of the way for more support and to answer all the questions you didn’t ask the first time.
Print out:
1. What is the type of cancer I have? Can you write it down?
2. Has it spread beyond the primary site?
3. What are my treatment options?
4. What are the side effects of each treatment option? Are they temporary or long-term?
5. If applicable, what are my surgery options?
6. What is the goal of treatment? How will I know if it’s working?
7. How long will treatment last? What will happen after treatment? What types of follow ups will I need?
8. Are there any clinical trials that are applicable?
9. Will I be able to go about my daily activities? If not, can I expect those abilities to return? When?
10. What do I need to know about fertility? What about sex?
11. Are they any lifestyle changes I should make?
12. Do I need genetic testing? Should my family do this as well?
13. Who will my care team be? Do you provide any mental health services?
14. Who should I contact if I have more questions?
15. Is there anything else I didn’t ask about that you think would be important to know?
