You may find that most of the time you spend talking with your oncologist or your cancer care team is focused on how you are doing physically. This is important because it will help them know how you are tolerating treatment and whether there is a need for additional testing. But your physical health is only one of several important topics you might want to discuss during these conversations. The Agenda resource will help you to consider and share the full range of topics you want to discuss at the beginning of each meeting with your oncologist or cancer care team.

The first thing to think about is whether your physical health is a priority for you during the meeting with your oncologist or cancer care team members. If you feel well physically, you may want to focus on other topics or pressing questions. On the other hand, if you have physical concerns, here a few tips that will help your clinicians better assess how you are doing and what might be helpful.

First, it would be helpful to your oncologist for you to assess your overall activity level for an average day. We call that your performance status. A commonly used measure of performance status is the ECOG scale (hyperlink). You can complete this quick scale and bring the results with you to your visit.

Second, if you are not doing as well as you were expecting, ask yourself why this might be the case? Make a list of possible reasons you can share with during your visit. Here is what you might bring with you:

• Start with a description of what is bothering you including things you do that make the symptom(s) better or worse. (hyperlink)
• Share how the symptom(s) affect(s) your performance status. For example,
  • Do you become short of breath when you walk too far or fast? Or
  • Do you experience more a general feeling of being too tired to go for a walk?
  • Are these symptoms common during your average day, or do they occur occasionally?
• If your symptoms remind you of something that has happened in the past or something you have read about, feel free to share.
• If you have recently or are currently undergoing surgery, radiation therapy, or chemotherapy compare what you are experiencing with what you were told you might experience.

Many people with cancer want their doctors to focus on treating the cancer and are hesitant to talk about how they are feeling. But your oncologist wants to know how you are doing emotionally as well as physically so he or she can take better care of you. Your oncologist can help you access a wide range of resources to help you feel better, more like yourself.

Here are some things to consider about your psychological and emotional health. It is common for patients and their loved ones to experience feelings of anxiety, depression, and fear. However it is not always easy to figure out why you are experiencing these feelings.

It would be helpful to your oncologist for you to start out by thinking about how you're doing emotionally overall, and writing down a performance status for your emotional health. Track your mood across 4-5 days and write a brief description of your mood each day.

• Also note how much your daily plans are impacted by your mood each day. For example, do you change the day's plans because of your mood? How often does this happen? Every day? Once in a while?

Second, try to figure out how you would describe your mood. (hyperlinks). [PHQ9?]

Third, note whether how you are feeling is similar to how you have felt in the past? If it is, jot down what was going on then? What helped you feel better? This will be important information for your oncologist.

Many people avoid talking about the future because they don't want to think about it, they prefer to hope for the best, or they understand that generally no one can predict exactly what's going to happen. Often patients focus their time scheduling appointments, testing, and understanding complicated information. But talking about the future with your oncologist is important. As you work with your oncologist to make care and treatment decisions it is important that you plan with a sense of what the longer term picture might look like. With this knowledge you are better able to discuss your oncologist's recommendations and work with him or her to make informed treatment choices.

Some oncologists talk frequently and openly about the future and what patients can expect. Others tend to talk in less specific terms. If you feel that you have not had an opportunity to talk about your future in a straightforward way with your oncologist, here are some questions you might ask:

• What is my prognosis? Your oncologist is trained to think about how likely something is to happen and when. Invite them to share their thoughts on this with you.
• Clinical trials can measure remission rate, survival, or rates of complications for specific therapies. You can ask your oncologist to share this information with you.
• What is the best and worst case? Your oncologist may not be able to predict exactly what will happen in the future, but could share a more general picture of possible future outcomes.
• What are the important milestones? When talking about the future your oncologist may be able to share milestones, or signals that your are progressing. Those can be very helpful in giving you a sense as to what to expect in the future.

It is commonly assumed that if a person has cancer it should be immediately treated. People with cancer often feel they don’t have a choice. But you do. It may not be an easy choice, but it is a choice. One of the most important -- and difficult -- conversations is about what you can expect from treatment. Sometimes your oncologist's expectations are that treatment is more likely to harm you than help you. This is important to know, even if you do not agree. It is important to talk about why treatment and as well as what treatment.

Most persons with cancer want to resume a normal life. Sometimes this is possible. Sometimes it is not possible. For some, there comes a time when the cancer does not respond to treatment. In those times, you may consider a very difficult question: would I be better off without treatment?

When reflecting on whether another line a treatment is right for you, you could start by asking your oncologist three questions:

• How will I know if treatment is not worth it for me? You can talk with your oncologist about what to expect from a potential treatment. You may want to discuss both what is the likelihood that the treatment will bring about an acceptable improvement in length of life or quality of life and what are the side effects or symptoms of treatment that you will likely experience. You can discuss these potential benefits and harms of a particular treatment and compare those to the option of no treatment and together decide what is the right decision for you. Which path will help you accomplish what is most important to you at this time, or for your future? These choices are very individual.
• How will we talk about it? Letting your oncologist know that you want to consider the option of no treatment along with your other options is important. You tell your oncologist you would like to consider this option along with treatment options in your future conversations.
What will we do instead? The end of treatment does not mean the end of care. Typically, there is a transition from active treatment to a continuation or increase in palliative or supportive care, care that is meant to make you feel better and improve your quality of life, but is not intended to bring about remission or cure. Ask your oncologist to help you plan multiple pathways. What would a path focused on continued cancer treatment look like? What would a path focused on symptom care look like? This can give you a better idea of what to anticipate, and can help you make decisions that are right for you.

You'll spend a lot of time talking about your cancer -- the diagnosis, the outlook, the treatment goals, options, benefits, and harms -- with your oncologist. It may feel that cancer dominates your life. You almost certainly have changed your plans to adjust to living with cancer. But it's important to keep track of what you wish you were doing and what you value. Values are usually beliefs that don’t change much over time. They're the principles we live by. Our goals are the things we want to accomplish. Your values and goals may influence which cancer treatment options are the best fit for you. It is important that you take some time to share these with your oncologist, ideally early in your care, and throughout your cancer journey to make sure that your cancer treatment plan is the best to help you reach your goals and because over time your goals may change and you will want to update your oncologist.

It is helpful to your oncologist to know what is important to you. Not just in terms of your immediate cancer, but in your larger life. Different treatment plans have different side effects and impact life in different ways. In order to match the best plan to your particular life, it is helpful for your oncologist to understand what your main life goals might be. In preparing to talk with your oncologist about your goals, you may want to start by making a list of the important things in your life. For example: you might identify:

• Your daily routine: We all have things we need to accomplish each day for ourselves and others. What daily activities are particularly important to you?
• The things you enjoy: Do you have hobbies? Time with family? Pets? Work? Other things that you enjoy and want to continue as long as possible. These are important to share during conversations with your oncologist.
• Your hopes for the future: Your vision of what is important for the future is unique, based on your own values, life situation and relationships. It is helpful for you to share these with your oncologist so they have a better understanding of what you hope to achieve in the future.
• How treatment has affected your relationships, work, and identity: Identifying the impact of cancer treatment thus far on your life can help your oncologist have a better idea of what treatments may be working for you, what additional supportive care may be helpful, and what treatments to possibly avoid in the future.