How to find or change your breast cancer treatment team

From choosing your treatment plan to working with many different doctors, every step can feel enormous. In the middle of all this, a big question stands out: How do you make sure you get the right care you need to get well?

Fortunately, there’s a long-list of individuals available to help. Beyond oncologists–of which there are many types–there are other professionals including treatment navigators, financial navigators, psychologists and nutritionists specializing in oncology, and countless others.

When it’s time to build a treatment team, establishing trust with your healthcare providers is the most important thing, says Kristy Fujinaga, RN, BSN, OCN, a clinical nurse navigator of cancer survivorship. For Ms. Fujinaga, trust means being told there’s options, receiving empathy, and knowing you’re on the journey together.

Thrivers like Ebony-Joy Igbinoba, Yvonne Williams, Krysta Juris Dean, and Ashley Walls, know the importance of a good team, as they’ve each navigated the process–and continue to find and change providers.

Finding a compassionate, empowering team

Ebony-Joy Igbinoba, a 38-year-old adjunct professor and single mother of two children, had a routine mammogram with her primary care doctor in 2019, which led to a life changing diagnosis: stage II breast cancer. Initially unsure of who she needed on her care team, she was introduced to the concept of a breast surgeon, a profession she didn’t know existed.

Reflecting on her journey, Ebony-Joy recalls an important moment with her radiologist: “‘If this is one of my family members, then who would I go to?’ That’s what I needed to hear,” says Ebony-Joy. The question struck her deeply. Afterwards, she consulted with a surgeon who empowered her by saying, “You’re the captain of this ship. You do not need to use me or any one I refer you to,” Ebony-Joy reflects, nearly five years later.

Those two moments, along with many others, exemplify the qualities she believes are necessary for all breast cancer care team members: trust, compassion, and empowerment.

L-R, Ebony-Joy with her two children and puppy; Ebony-Joy ringing the bell post-chemotherapy

Ebony-Joy explored surgery options and sought a second opinion from a different provider, then ultimately chose the first surgeon for her bilateral mastectomy and breast reconstruction.

“When your provider lays out your options and tells you about the process is a sign of trust,” says Ms. Fujinaga, who works at The Queen’s Medical Center, Punchbowl Campus, and helps individuals navigate their cancer journeys.

In past scenarios–medical and otherwise–Ebony-Joy felt invisible and marginalized as a Black woman. This time around was different. She felt heard, valued, and seen. Over the years, her care team has since expanded to include dozens of health care providers across various fields. Some of the lesser known include a nurse navigator, who helped Ebony-Joy find financial resources and a home cleaning organization, among other helpful resources; and a therapist who specializes in oncology that has helped her navigate her diagnosis and post-traumatic stress disorder.

“I felt heard and empowered on hard days because I had people fighting along with me,” she says of her care team.

Instead of settling, switch doctors

Despite her overall positive experience, Ebony-Joy had to change members of her care team due to reasons beyond her control. Her gynecologist moved. And her oncologist is retiring soon, so she’s currently looking for a new one who specializes in breast cancer.

For some thrivers, such as 59-year-old Yvonne Williams, switching doctors comes out of bad experiences. Yvonne, who was diagnosed with metastatic breast cancer in 2019, switched oncologists three times in less than two years.

She received care from two of the oncologists, both affiliated with a widely-known hospital system in Texas, for more than six years. An accumulation of many unpleasant experiences over time led her to leave that system altogether. One of the recurring issues was poor communication. She left voicemails, spoke to nurses who promised the doctor would call her, then never received calls back on multiple occasions. During visits, she felt like her doctor didn’t listen or pay attention. For example, Yvonne expressed her concern with increasing her medication due to ongoing side effects that previously led to hospitalization. Still, the doctor insisted she increase her dose.

“If you’re not happy with the communication, it’s important to look for another team. You don’t need to stick with the big hospital system,” advises Yvonne.

L-R, Yvonne with her friends; Yvonne with a bouquet of flowers

For years, she was hesitant to look for a care team outside of the renowned hospital system. After all, it was close to her home and convenient to have lab work, check-ups, and chemotherapy on the same day. About a year ago, she made the switch to a new oncologist about forty-five minutes from her home.

“I’m so glad I did. For me, the extra [time] is worth it because I have peace of mind being treated right. My doctor cares about me,” Yvonne says.

Building a strong relationship with your healthcare team is crucial for navigating treatment. Research shows that when there is a strong and supportive patient-physician relationship, patients are not only more satisfied with their care but feel more confident in their treatment decisions.

For those looking to switch doctors, Yvonne offers important advice. She recommends reaching out to family and friends who have experience with a breast cancer oncologist or related health care provider, though, she cautions that experiences vary. Yvonne herself experienced this with her second oncologist, who came recommended by another thriver, but which didn’t suit her needs. She also suggests reaching out to your insurance company who may have an oncologist navigator to support you.

Think about long-term care, lifestyle

Sometimes you may want to switch doctors, even if it’s a good fit. That’s what 39-year-old Krysta Juris Dean, a mother and deputy chief of staff in the United States Senate, recently did.

She was diagnosed with stage II invasive ductal carcinoma, the most common form of breast cancer, at 37 years old in August 2022. After a bilateral mastectomy she began chemotherapy in December 2022. Upon completing chemotherapy, her oncologist told her she would need to take monthly office-based medication for the next 5-7 years. Learning this, Krysta decided she would need to switch oncologists to find someone closer to her home.

“I loved my oncologist; however, I needed to prioritize convenience,” says Krysta. “The thought of leaving and making a change to your care team can be daunting. You have to play the long game and find a care team that fits into your life.”

Like Yvonne, Krysta was at a world-renowned hospital system. Leaving the Maryland-based academic medical center for a smaller practice was scary, she says, but she did extensive research on the internet to find a good fit.

Krysta found a new oncologist who she loves. She gives Krysta her undivided attention, connects with her on a human level, and understands her fears.

“It’s important to feel safe and receive compassion from your oncologist, especially because that is the person who is going to be your primary doctor for the foreseeable future,” says Krysta.

Online resources can help

Krysta emphasizes the role of the internet and social media in her search for a new provider. She read many reviews and searched local Facebook groups to gather information. Ms. Fujinaga agrees with Krysta’s approach, and she advises the thrivers she works with in Hawaii to check the internet. Due to the state’s size and location, there are only a handful of surgical oncologists who specialize in breast cancer. Despite limited options there and in some regions of the contiguous United States, reading online reviews can still be helpful to see if the provider is a good fit for your preferred communication style. For example, many providers on The Queen’s Health System website have videos so you can hear their voice and learn more about their background, beliefs, and more.

Ashley Walls, who was diagnosed with breast cancer at 29, also found the internet helpful to find members of her care team, including a nutritionist who specializes in oncology. She knew she needed more protein and had a desire to eat, but was too nauseous. Through a Facebook group, Ashley found a nutritionist who became a key member of her treatment team. They met virtually every week to discuss Ashley’s diet, how to improve it, recipes to cook, and more.

Ask questions and advocate for yourself

Ashley found a lump on her breast in March 2021. After a mammogram and ultrasound during separate visits to her primary care doctor, gynecologist, and breast surgeon, they all concluded the lump was a cyst. According to them, she was too young and didn’t have the risk factors for it to be cancerous. Wait six months, they advised.

Although uncomfortable, she took their advice. Her tumor doubled in size during the next six months. In September 2021, Ashley met with a medical oncologist when she received her diagnosis: stage III triple-negative breast cancer. A second opinion from another facility confirmed the diagnosis.

The high school math teacher’s insurance coverage was limited. She settled with an oncologist for her initial chemotherapy and radiation. After completing that round of treatment, she switched her insurance to widen her coverage. Although professional, Ashley’s original oncologist didn’t specialize in triple-negative breast cancer. Her current one does, which she says is reassuring and has made a difference in her care.

L-R, Ashley with a breast implant; Ashley during her "Stronger than this" photoshoot

“It’s okay if you need to postpone or start treatment at one place, then go somewhere else,” says Ashley. “It feels like it all happens in an instant, but you have to realize how long treatment is in the grand scheme of things.”

Now 31 years old and a new mom to a baby boy, Ashley’s care team has expanded to include: an insurance-affiliated nurse navigator, a hospital-affiliated nurse navigator, medical oncologist, radiation oncologist, plastic surgeon, hepatologist, hematologist, maternal-fetal medicine specialist, general practitioner, occupational therapist, physical therapist, and others.

To make the most of all her appointments, she suggests keeping a running list of questions as they come to you throughout the day, either in a notebook or on a smartphone. When she wasn’t sure what to ask, her insurance-affiliated nurse navigator offered suggestions. Similarly, Ebony-Joy consulted a family friend and used online resources like Google to find questions to ask, as she knew she didn’t need to reinvent the wheel.

Ms. Fujinaga highly recommends people write both their questions and answers. She also suggests: “If patients don’t know what to ask, I suggest asking: Is there something I should know that I haven’t asked you about?” This can help lead to other questions.

Another option is to ask your doctor if it’s okay to record the audio during appointments. Don’t just record, also go back and listen, says Yvonne, who began recording all her visits after her initial bad experiences. If you forget to ask a question, take advantage of the online portal or email, if your doctor is accessible that way.

Above all: be your own advocate.