Katie Finley was shocked when she learned she had metastatic breast cancer (MBC).
She wasn’t the only one.
“The doctors were basically saying, Oops, we thought you had stage 2, but you actually have stage 4,” she recalled. “Everyone was scrambling on what to do next.”
As she looked around the room at her care team — medical, surgical and radiation oncologists — Finley heard that her breast cancer had spread to her bones. And because MBC can be treated but not cured, her team would change. Surgery and radiation were off the table for her, so she wouldn’t see those oncologists anymore. It was just the medical oncologist and Finley against the disease.
She didn’t immediately feel comfortable with her, but over time they built a good relationship.
“It takes time to trust each other and to speak the same language,” Finley said. “It wasn’t a perfect fit from day one, and I felt we had a lot of work to do together.”
In 2020, an estimated 168,000 women were living with MBC in the United States. Technically, MBC is breast cancer that has spread to another part of the body, such as the brain, lungs or, in Finley’s case, bones. It typically develops months or years after a person has been diagnosed and treated for breast cancer. Around 30% of women diagnosed with breast cancer will develop MBC, while 6% of women have MBC when they are first diagnosed.
The cancer care team, or professional support surrounding the patient with MBC, can be quite diverse depending on diagnosis. Lillie Shockney, M.A.S., a university distinguished service professor of breast cancer and professor of surgery at Johns Hopkins University School of Medicine, said the foundation of a strong team should start with a doctor who has extensive knowledge and experience with metastatic disease. “Dealing with a general medical oncologist is not a good idea,” she said. “Such a person would likely not be up to date on clinical trials and the latest updates on standards of care.”
Other care team members may include:
Internal medicine physicianBreast cancer surgeon (also called a surgical oncologist)GeneticistsPathologistsPhysical therapistsPlastic surgeonsPsychologists
Care teams may also include people who offer support outside of the traditional medical realm, including clergy, social workers and massage therapists.
While an incurable diagnosis is no doubt overwhelming, transparency is key when it comes to treating each individual case. “The goals of treatment need to be based on [each person’s] goals and not the doctor’s goals,” Shockney said. “Doctors are taught to treat the disease, sometimes forgetting there is a patient attached to this diagnosis.”
To start, Shockney said to write down life goals — anything from a future event to an ongoing work schedule — and share them with your doctor. This can help tailor treatment specifically to the goals. For example, if a patient requires chemotherapy and wants to keep a relatively normal work routine, chemo can be scheduled on Friday afternoons to have the weekend to rest. “She [the patient] may even get a drug holiday so that she is off treatment for four to six weeks so she can enjoy her new granddaughter or enjoy her wedding anniversary celebration,” Shockney said. “Treatments need to be designed to enable these goals to happen whenever possible.”
In addition to life goals, asking the following questions can help the patient discover what is important to her moving forward with treatment (or check out this handy discussion guide):
How much do I know about breast cancer?
How much do I want to know about breast cancer?What am I hoping for right now?What am I most worried about right now?What are three things that bring me joy?
The topic of life expectancy may be sensitive for some patients, but it is important to discuss it with a doctor because — like everything with cancer — no two cases are the same. Finley, for example, said her oncologist brought up life expectancy first, but the conversation saved her anxiety and stress. “She gave me context that I am not just a number — what I read on the internet is not my fate,” Finley said. “It’s important to do research, but you need the context.”
The National Cancer Institute and National Library of Medicine are two organizations that provide resources for newly diagnosed MBC patients, including coping methods and information on the latest clinical trials.
While the internet can be a great resource, it can also be a scary place of blanket statistics for people living with MBC. Finley said her family was instrumental in helping her navigate through research online. Her mother joined numerous metastatic support groups on Facebook and acted as a filter, sharing only the legit information with Finley. And Finley’s sister, Laura, took detailed notes at all of Finley’s doctor’s appointments and did hours of follow-up research. “It does not matter [how] competent, college-educat[ed] a brain you think you have, it’s your own mortality,” Finley said. “Having someone there with you or on speaker phone to take notes can help you process that information.”
Since her diagnosis in 2019, Finley said her relationship with her oncologist has evolved in a good way, mainly because her doctor takes the time to listen and answer questions. “If someone on your team is always scooting you out of the room, find someone who will make time for you,” Finley said. “This is your whole life — and you deserve every minute of care you require.”
Metastatic Breast Cancer Alliance
This resource has been created with support from Pfizer Inc.