Managing a cancer diagnosis for yourself or a loved one presents new, significant impacts on physical and emotional health. On top of this, you may find yourself juggling various appointments between different specialties while scheduling tests and treatment procedures.
Joel Brothers, MD, a medical oncologist at Loma Linda University Cancer Center, understands patients' challenges when navigating cancer care within a complex healthcare system. Fortunately, several tips and habits can help alleviate the complexities of the cancer care process for patients, Brothers says. Below, he imparts his top recommendations to guide patients with cancer who balance many moving parts of their care.
Bring information, advocates, and questions to visits: If you are attending a first-time appointment with a new oncologist, Brothers advises bringing any medications or treatments you are using to the visit. This will help the oncologist understand your current treatment and make necessary adjustments. Brothers also says to have digital or hard copies of your prior medical records handy for first-time appointments. Important information to bring, if available, includes CT scans, MRIs, PET scans, pathology reports, and any notes from previous medical oncologists.
In Cancer Centers like Loma Linda University’s, Brothers says a new patient team will store and share the information with your new oncologist before the initial visit.
“Having a copy of everything is generally good practice and helps move the scheduling and care process along, especially if you’re moving between oncologists,” Brothers says.
But there are also essential people or items to bring beyond the initial appointment with a new oncologist. For instance, Brothers says bringing an advocate or loved one to as many oncology appointments as possible proves helpful for patients. Inviting a trusted person to oncology appointments provides patients emotional support and an "extra set of ears," Brothers says.
“There’s usually a lot of information being shared at oncology appointments, and due to the emotional nature of the information and sometimes difficult news, it can be hard for patients to process and remember everything that is explained in a visit,” he says. “Having someone there can help catch some things the patient might’ve missed.”
In addition to bringing an advocate, Brothers advises coming to the clinic with a list of questions you plan to ask. Without written reminders, patients may forget or become distracted from the essential questions they'd intended to pose during their visit.
“It happens too many times to count when a patient tells me, ‘I was going to ask you something, but I forgot,’” Brothers says.
Remember names, appointments, and medications: Besides questions for the oncologist, Brothers says many other aspects of care would benefit patients with cancer to remember. One crucial element would be retaining the name of the RN navigator at the clinic who helps coordinate patient care, Brothers says. Knowing the first names of prominent care team members involved in your care helps build familiarity, connection, and trust. It also enhances efficiency when patients know who to ask for when making calls to the clinic, Brothers says.
It is no easy feat to keep track of appointments between multiple specialties, like radiation oncology or surgical oncology, and testing to determine the best course of treatment — multiple scans, bloodwork, or biopsies. Brothers says the Cancer Center will provide patients with calendars and highlight upcoming appointments after visits but sometimes dates change or appointments are not scheduled yet. That's why patients must ensure they have access to their online patient portal that can track and update with the changes, he says.
MyChart, for instance, displays upcoming appointments and tests, doctor's notes, and detailed changes to any medications. Brothers says patients who struggle remembering the long and un-catchy names of anti-cancer medicines can always reference their patient portal. Knowing medications and understanding their functions and potential side effects are helpful for patients to understand their health, Brothers says.
Communicate with your care team: A patient portal is one of the most seamless means a patient with cancer can use to communicate with their oncology team, Brothers says. This form of asynchronous messaging can save patients time by avoiding spending a wait time on hold on the phone. Brothers says the RN navigator will triage MyChart messages from patients to the appropriate person or resource, and patients can expect responses back for non-urgent issues within 72 hours.
Other best practices for communicating with your oncologist includes honesty and openness about how treatments affect you, Brothers says. He says there are available treatments to alleviate side effects, so being forthcoming about side effects is vital.
Patience during clinic visits is another virtue, Brothers says. If the oncologist is running behind for your clinic appointment, he says they have likely taken extra time with another patient who needed it. "They will also hope to take extra time with you if you need it as well.”
Finally, Brothers says if you have concerns about your cancer care or seek access to resources and additional support, "just ask." The Cancer Center offers a variety of resources for patients with cancer, ranging from transportation to mental health and much more.