The cancer journey brings about many overwhelming feelings. Many thoughts may go through your mind when you hear, “You have cancer and you need to be seen by an oncologist.” You may wonder how this will impact you, your family, and your friends. The possible anxiety caused by wondering what the oncologist will tell you at the appointment and which decisions you will have to make may take over your thinking. You may have trouble listening, understanding, or remembering what anyone is telling you during this time due to the very normal distress, uncertainty, fear, and anger you may be feeling.
Having a better understanding of what to expect, what to take with you, and which questions to ask at your first oncologist’s appointment may help you better prepare and lessen the anxiety.
Get the logistics clear
Before your first appointment, make sure you know the answers to these questions. Although they seem obvious, it can be easy to overlook these details when you’re worried about your diagnosis:
- What is the full name of the oncologist I will be seeing?
- Does the oncologist take my insurance? What will I be expected to pay on the first visit?
- How will the oncologist get my medical records? Will the referring physician send them, or do I need a copy to take to the first appointment? If I need a copy, how can I get it?
- How do I get to the oncology office?
- Where do I park, and how much will I have to pay for parking?
- How long will the first appointment take?
Remember, the initial appointment can be overwhelming, and it may help to look to your support team of family and friends to be your eyes and ears. Whether you have someone go with you or not, it will be helpful to take along a notebook and pen (or an electronic version of these if you prefer) and a calendar that has your existing schedule and other appointments listed.
These will help you gather the information the oncologist gives you so you can refer to your notes later, when you have a clearer head. Your calendar will help you remember what other appointments may interfere with your follow-up doctors’ visits, additional exams and testing, and treatments.
Come prepared with questions
One question to ask yourself before the first appointment is “How much do I want to know?” Having an idea of what is most important to you on your first visit can help you have a good conversation with your doctor.
Write your questions down in your notebook and bring them to the appointment, or print out one of our lists of questions to ask your doctor. These lists cover the specifics of your diagnosis and treatment options, as well as the details you will need to know before beginning treatment.
Another important topic you may want to discuss during your first appointment is how soon you’ll need to start treatment. Maybe you have a vacation, wedding, graduation, or other big event you want to go to before starting treatment, is it okay to wait? Or maybe you feel like your doctor is waiting too long to do your surgery or start your radiation or chemo. Talk to your doctor about your concerns. Sometimes delays are necessary to get enough information about your overall health and the cancer in order to know which treatment is best for you.
There are also some “housekeeping” questions you should ask at your first appointment. These will help you communicate effectively with your health care team and make sure your privacy is protected:
- What number should I call if I have questions? What is the best time to call? Some doctors and nurses have a special time to return calls. Expect your doctor or his/her representative to call you back, but remember that a quick response may not be possible if another patient is having a crisis. And many times a nurse can answer your questions, too.
- Where do I call if I have an emergency? What about after office hours, on holidays, or on the weekend?
- Who else can get information about my condition? You may want your doctor to be able to talk with your spouse, family members, or loved ones about your diagnosis and treatment. Think about your choices and tell your doctor what you want. You will have to sign a form giving the doctor permission to talk to certain people. This is to protect your privacy.
- Is there another doctor who should be kept informed about your diagnosis? If you are being managed for another chronic health issue (i.e. diabetes, heart disease, rheumatoid issues, immune issues, multiple sclerosis, renal disease, etc.) it will be helpful for other doctors to be aware of your cancer diagnosis and treatment in the event one impacts the other.
Your oncology team members are your partners in helping you through this journey. If you are having any symptoms, either physical or emotional, be sure to bring the symptoms up during your appointment and tell them how you’re feeling. It’s important to always tell your doctors about any effects from the cancer itself or, once your treatment begins, any effects you notice from it. Physical symptoms can be very important for your doctor to know about prior to treatment, during, and even after treatment. The better the oncologist understands how you are feeling, the more he or she can help you through this time. The doctor can help by prescribing medication to help with a specific symptom or getting you to another specialty team who can help you cope with a symptom better. For example, at times people with cancer may have trouble with anxiety, pain, breathing, sleeping, nausea, appetite, moving their bowels, feeling tired, or other problems even before treatment begins, so be sure to explain to your oncology team what’s troubling you the most.
Although the first appointment may be overwhelming, remember that developing a plan of action will be a great starting point. Keeping a journal of the questions you asked at each appointment can help. If you don’t get all of your questions answered at the first appointment, ask your doctor if you will be able to go over the rest at the next appointment, or if you can call later. Not all cancers are the same, so ask your oncologist if treatment options will be discussed that day, and, if so, when you have to make a decision. If you need to go through other exams or appointments before a treatment plan can be discussed, find out about timing in order to better understand when the oncologist expects you to begin treatment. Remember, setting up a plan of action and asking questions, even if they are repeat questions, may help you better understand your follow up appointments, what’s expected of you as a patient, and what’s expected of your team in order to have a more productive open communication with them as they assist you through your cancer journey.
Alvarado is an oncology nurse information specialist for the American Cancer Society.