Making The Most of Your Cancer Specialist Visit
Content Advisory: This this page has been developed for adults living with cancer (i.e., patients, and their supporters). It has not been designed to meet the needs of health professionals or children. This page does not contain information about prognosis or other potentially distressing topics.
Page Summary: This page contains information about what to expect and how to prepare for your first visits with a cancer specialist. It has been designed for individual's at the start of their cancer journey. It may be helpful for individuals at any point in their cancer journey. The content was developed with input from people who have experienced cancer in the province of Alberta, Canada, but the content is general so it will likely apply in other parts of the world.
Author: Dr. Maclean Thiessen MD MN(iis) FRCPC, Medical Oncologist, CancerCare Manitoba, Winnipeg, Manitoba
Contributors: The research participants in the CancerMaps research project
Why am I seeing a cancer specialist?
Cancer specialists focus on caring for people living with cancer. Typically, the term cancer specialist refers to a surgical, medical, or radiation oncologists. These are types of physicians who have completed medical training that includes extended training in areas related to cancer care. Surgical oncologists perform surgery to remove cancer, when possible. Medical oncologists use medications that are taken by mouth or are injected to control or cure cancer. Radiation oncologists use radiation which can be administered using external beams, internal implants, or through pills or solutions that are taken by mouth in order to cure or help control cancer.
You likely have been referred to a cancer specialist by another healthcare professional to manage a cancer diagnosis. When a non-cancer specialist suspects cancer often they will arrange for tests or procedures to confirm a cancer diagnosis. These may include biopsies, bloodwork, and imaging tests. When the results of these are available, they will often send what is called a "referral" to a cancer specialist who will work to co-ordinate expert care for the cancer diagnosis.
What can I expect from my cancer specialist visit?
Cancer specialists usually work out of large health centers in major cities. Patients are often referred to a cancer specialist by a family physician, general surgeon, or other healthcare professional involved in the diagnosis of the cancer. Cancer specialists need special resources to do their jobs and have specialized training that they can pass on to learning healthcare providers. As a result, they often work out of large urban centers.
Appointments to see a cancer specialist can take a while to happen. After you are referred to a cancer specialist, it may take weeks before you are contacted with your appointment. You may be given your appointment with short notice. It is normal to feel anxious and frustrated with the time it takes to just find out the day and time when you will be seen. Additionally, the emotions you experience related to being diagnosed with cancer can be overwhelming. When the day of your appointment finally comes, travelling to the cancer center for the first time, finding parking, and then waiting to be seen (which may occur well after your scheduled time) may leave you emotionally and physically exhausted.
Visits with cancer specialists can be stressful. Waiting to find out more about a cancer diagnosis, including how it may impact the other aspects of your life and what kind of treatment is needed can be a stressful experience. There are also a lot of other things about the experience that people find stressful like finding parking, sitting in the waiting room beyond your scheduled time waiting to be seen, and trying to remember everything the cancer specialist has to share. Additionally, you can expect to meet more people than just your cancer specialist, as nurses, trainees, and administrative staff may all be involved in your care. It is not uncommon for people to feel overwhelmed, and even frustrated with the experience.
What can I do to make the most of my visit?
Being prepared for your visit will increases that chances that you will have a positive experience at your appointment. The following sections include tips and advice from people that have been in your shoes as well as from healthcare professionals to help you navigate your first appointment. After you have reviewed the content below, check out the "Quick Reference Guide" at the top of the page for a handy checklist to help get you ready for this important meeting.
Patients and Their Support People Recommend:
Give yourself time to plan and prepare the day before the visit. Whether you are the one that has been diagnosed with cancer, or you are supporting someone living with a diagnosis, give yourself time to prepare before you need to rush out the door to make it to the appointment. Is there information that the specialist will need to care for you, such as a list of medications? Do you have a plan for getting to the specialist appointment? When will you need to leave your house? Do you want to arrive with extra time to eat a snack, find and use the bathroom and figure out where the clinic is before you are expected at your appointment? How are you getting home after the appointment?
Make a list of questions you want to ask ahead of time. There is a good chance that before your first visit with a new cancer specialist you will have lots of questions. Take some time to get organized, perhaps the night before, and identify what questions are important to you. Try to prioritize them in case there isn’t a lot of time in the appointment. Of your list of ten questions, which ones are most important to get answers for? At the start of your visit let your cancer specialist team know that you have some questions and ask when the best time to go over them would be. Start with the most important questions. If you aren't able to get helpful answers ask your healthcare providers where else you can go for information.
Plan for the cancer specialist visit to take the whole day. You probably have been given a very specific time for when your appointment will occur, but the time you will need to be at the cancer center is probably longer. Especially if it is your first visit, you might need extra time for unexpected tests or even to see another health professional. Depending on what happens in the appointment, you may also benefit from some extra time afterwards to just decompress and collect yourself. Similarly, if you are scheduled to work or have other commitments around the appointment, it is not a bad idea to let your boss and whoever else know that you need the whole day for the appointment. As you become more familiar with what to expect with your visits, you might find that you can better predict how much you need to put into the meter and when you can return to your other duties – but for the first few visits it won’t hurt to play it safe. Check out the link to “How to Navigate Employment and The Cancer Journey” in the “Related CancerMaps Content” section below for more information on working with employers.
Lastly, if you are planning on driving or you have someone that is driving you, consider how you are going to deal with parking. Worrying that the meter is going to run out if your appointment takes longer than you expect might may cause unnecessary stress. Consider paying for an hour or two more than when you expect your appointment to end, or even for the whole day, until you get a better idea of how long your appointments will take.
Healthcare Professionals Recommend:
Learn and use strategies for dealing with stress in a healthy way. Just like athletes need to relax in the days and hours leading up to a big event to perform their best, taking care of yourself before stressful parts of your cancer journey is important. Taking care of yourself will help you be in a better place mentally and physically to work with your healthcare team and the people in your life that are sharing the cancer journey with you. In addition to getting organized in the days leading up to your appointment, consider taking some time to relax and unwind as best you can. Check out the link in the “Related Topics” section below for content on managing stress, including strategies you can use on your own to help you relax your mind and body when navigating stressful situations.
If you can, bring a team to support you emotionally, physically, and to help gather information. A first appointment with a new oncologist can be incredibly overwhelming. It is not uncommon for patients to remember very little of what is said, such as important information about diagnosis, treatment options, and what to expect in the future. As a result, they may have a difficult understanding what is going or helping the people in their lives understand what to expect and how they can help. Additionally, if difficult news is shared by the healthcare provider, a patients may not be in a good mental state to travel home alone. A small team of one or two friends or family members who can drive the patient, drop them off at the front doors, figure out parking, take notes, ask the healthcare providers questions, and generally help the patient if they become overwhelmed will make the experience less stressful.
Find a way to record important conversations so that you have the option to review them later or share them with interested friends and family. Research shows that there are many benefits to recording the conversation you have with your oncology specialist. Whether or not you have someone along with you that can take notes of what is said, using a device like your smartphone to record what the cancer specialist is sharing will give you a record you can refer to later to ensure you haven’t missed anything. Plus, the recording can be shared with other friends and family who are interested in learning what was said. Many people use the camera/video recording application on their smartphone to record their appointments. Some centers offer a dedicated smartphone app or offer a consultation recording service, but any recording app will work. You can also purchase a handheld audio recorder from most office supply stores that will work well (just make sure you get the salesperson to show you how to use it). Let the know cancer specialist know you would like to record the visit so you don't miss anything that is said and so you can share what is being communicated with the other people supporting you. If you are not able or interested in recording the visit, consider bringing a pen, paper, and something hard to write on so you, or someone accompanying you, can take notes.
Content From Other Sources on This Topic:
Working with your healthcare team - Content from the Canadian Cancer Society
Making the Most of Your First Appointment with Your Oncologist - Content from the Memorial Sloan Kettering Cancer Center
What can I do BEFORE my first appointment with the oncologist? - Content from OncoLink/University of Pennsylvania
How Can I Get Help from a Real Person?
Your healthcare team, including you family physician, cancer specialists and any nurses involved in your care team are likely good people to talk to if you have concerns about your appointments. Additionally, many cancer centers have counsellors and other people who can help you navigate the many challenges of the cancer journey, but you may need to ask your cancer specialist how to contact these people. Proceed to your nearest emergency department or call an ambulance (911 in Canada and the United States) if you feel that you or a loved is in danger.