You’ve heard those frightening words: You might have, or you do have, cancer. Now, you’re watching the calendar—or maybe the clock—waiting for your first appointment with an oncologist.
What can you do while you’re waiting to see a cancer specialist (oncologist)? What should you expect from that first visit?
We asked UNC Health oncologist Carrie Lee, MD, MPH, and two oncology nurse navigators how patients and their loved ones can prepare for their first appointments with an oncologist, and what to do afterward.
5 Ways to Prepare for Your First Visit to an Oncologist
1. Know that you won’t get all the answers at your first visit.
A lot of people expect their oncologist to tell them right away what kind of treatment they need—surgery, chemotherapy, radiation, medication or a combination. But it’s helpful to know that the first visit with an oncologist is often about gathering more information so they can identify the best treatment, especially with increasing options available.
You may need to schedule additional scans or biopsies or have your blood drawn. “We look for important biomarkers, features of the cancer that we need to understand so we can create a personalized treatment plan,” Dr. Lee says.
Lab test results to reveal the genetics of a tumor can take up to three weeks.
“We know this is a stressful time for patients, but given the complexity of cancer and what’s at stake, it’s important not to rush,” she says. “It may take days, weeks or several more visits, but getting the right individualized treatment is worth the wait.”
2. Don’t expect to remember—or even understand—everything you hear at that first visit.
A lot of information will be coming at you at once. But with the help of support people, such as oncology nurse navigators, you will get the information you need. Oncology nurse navigators help patients coordinate care and provide them with information.
“I tell patients not to worry if they don’t remember anything they hear at their first appointment,” says Stephanie Shea, RN, UNC Health oncology nurse navigator. “Sometimes they leave the office and everything they’ve heard leaves their minds, but we will repeat and remind them as many times as they need.”
You also can ask a loved one to help you keep track of what you need to know, says Tammy Allred, UNC Health oncology nurse navigator. If possible, bring someone to take notes during the visit. You also can ask for a written summary of the key points that were discussed.
“You should have backup to hear what is said and make sure nothing is missed,” Allred says.
Whether you’re alone or with someone, you can ask your doctor if it’s OK for you to record your visit. “If you do,” Allred says, “you can listen again and share with your family after the visit.”
And if you want a particular person to hear what your doctor has to say, but that person can’t be at the visit in person, ask if they can call in and listen to the conversation.
3. Try to stay off the internet.
Often, patients and their loved ones will search online for information about their type of cancer or look for patient chatrooms or support groups to see what others’ experiences have been.
“Everybody is so different,” Dr. Lee says. “Reading about other people’s experiences can lead to a lot of anxiety. There may be a time and place to look for online support, but not until you understand more about your cancer and your treatment.”
Allred says patients can be misinformed by an internet search.
“I’ve heard people who’ve looked up their cancer online say there’s no hope,” she says. “I always discourage patients from going to ‘Dr. Google.’ It causes undue stress and anxiety.”
4. Write down your questions.
Allred suggests maintaining a running list of your questions and bringing the list to every appointment.
“Keep a notepad next to your bed and anywhere else you sit most often,” she says.
List questions you have about your type of cancer, including standard treatment options, clinical trial or research options, side effects, standards of care, quality of life and potential outcomes. Your questions may help guide conversations with your cancer care team about what concerns you the most. They can help you better understand what to expect and when to expect it.
5. Plan to ask about clinical trials.
New treatments for cancer are tested in research studies called clinical trials. Ask your oncologist if a clinical trial is a good option for you now or in the future. Clinical trials can give patients access to new treatments that might not be available otherwise, and they help researchers develop better treatments for all patients.
UNC Health has a clinical trial patient navigator who can help connect you with resources once your provider identifies an appropriate trial.
It’s important to understand that clinical trials are ethically designed by doctors and regulated by the Food and Drug Administration, Dr. Lee says.
It’s a misconception that people in clinical trials are “guinea pigs” for long-shot treatments, Allred says. “Clinical trials can be a great opportunity for care and can really benefit patients.”
5 Things to Do After You’ve Seen Your Oncologist
Once you’ve seen an oncologist, you can take further steps to stay as healthy as possible and prepare to face treatment.
1. Don’t be afraid to ask for a second opinion.
Oncologists and cancer care teams are used to having patients ask if they should consult another doctor to confirm the diagnosis.
“Don’t be afraid to ask if a second opinion would be helpful,” Dr. Lee says. “Any doctor should be open to that.”
You can ask your doctor or care team how to go about getting a second opinion, Allred says, and if there’s someone they would recommend for a consultation.
2. Take advantage of available resources.
Dr. Lee suggests taking time to understand what resources are available to you, including educational materials, support programs, financial assistance and nutrition counseling.
The American Cancer Society offers numerous resources, as do comprehensive cancer centers. And you can always ask your nurse navigator or anyone else on your team for suggestions based on your needs.
Many patients and their loved ones experience anxiety, depression and other mental health challenges. Support is available to help you cope with your disease and its treatment.
3. Plan for work, and think about your priorities.
You may want to speak with your employer or human resources representative about time off policies and leave for illness. “See what arrangements you can make to be away from work,” Dr. Lee says. “Having the information will help you plan for what you need.”
Allred also suggests thinking about upcoming events and milestones you’re excited about, such as weddings, graduations and vacations. You can prioritize those events with your care team.
“Add lifestyle questions to your list,” she says. “How will my treatments affect my daily activities? Will I need to avoid anything? Will I be able to work during treatment? How do I apply for disability if I need to? Can I travel during treatment? What restrictions do I have?”
4. Let others help you.
Plan early so you know who you can depend on for care while you are in treatment, and what other resources you may need, such as rides to appointments or help watching your children.
Shea suggests that making a list of things friends and family members can do for you.
“This is as much for your loved ones as for you,” she says. “Let people go grocery shopping for you. Let them clean out the cat’s litter box. People want to help, and you’re not always going to feel like thinking of something for them to do, so having a list before you need help is good.”
5. Be forthcoming and honest with your care team and yourself.
Patients are sometimes afraid to tell their care team members about some habits or behaviors, Shea says.
“Don’t keep things from us that you think we’re not going to approve of,” she says. “We are not judgmental people. Tell us if you are smoking weed or cigarettes, drinking alcohol, seeking alternative treatments. We just need to know about it so we don’t make things worse.”
Shea also tells patients that they don’t always have to be positive.
“People are always saying you need to be positive, but sometimes that’s unrealistic and unsustainable,” she says. “You’re allowed to be angry and sad. And you’re allowed to express those feelings.”
If you have questions about your health, talk to your doctor or find one near you.