Navigators Can Help Steer You Through Breast Cancer Treatment
In the first year after a breast cancer diagnosis, Marveena Lynch had 42 cancer-related medical appointments. Her treatment team included a breast surgeon, radiologist, medical oncologist, lymphedema specialist and plastic surgeon. Then there were all the nurses and aides who took care of her during three surgeries and the technicians and other specialists who conducted and analyzed countless tests.
People going through breast cancer treatment should never be expected to relay messages between their many healthcare providers, but unfortunately, they often feel they have to. Luckily for Marveena, a nurse navigator welcomed her to her first appointment in 2015, where she met with her core team of doctors. The navigator’s role, Marveena learned, was to coordinate her treatment plan, troubleshoot as needed, and make sure test results and other findings were shared among the people involved in different aspects of her care.
“I was stunned with the news that I had breast cancer, and now I had all this information coming at me,” says Marveena, 67, of Greenville, South Carolina. She says her hospital’s team approach with the nurse navigator at the center didn’t make all her problems go away, but it made a difficult situation a little easier.
“I probably would have been more overwhelmed and frustrated,” says Marveena. She felt comfortable talking with her nurse navigator about sensitive topics, such as body image and sex after breast surgery. Her experience speaks to concerns that people with breast cancer often face.
Navigators on Your Team
A breast cancer diagnosis, whether it’s early-stage or metastatic, usually means you will get care from a variety of doctors and other care professionals. It may feel like no one in particular is on top of your treatment.
- an oncology nurse
- a plastic surgeon
- a genetic counselor (an expert to talk to about your family health history and genetic testing)
- a reproductive endocrinologist (an expert on fertility)
- a specialist in lymphedema (a condition that causes swelling in tissues under the skin of the hand, arm, breast or torso)
- a nutritionist
- a mental health professional
You also may already be seeing a family doctor or specialists for health issues that came before your cancer diagnosis, such as diabetes or arthritis.
To better coordinate breast cancer care, many healthcare systems are placing a navigator, typically a nurse or social worker, in the lineup. If you’re not offered a navigator, you can ask for one. The American Cancer Society and some community-based cancer support organizations also can help you find a navigator if there isn’t one where you get treatment. Some navigators are volunteers who have gone through breast cancer themselves. There are also independent navigators who charge for their services.
What Navigators Do
Cheryl Jones, RN, BSN, OCN, a hospital navigator with the Greenville Health System who helped Marveena through treatment, says “patients are usually happy to meet me, though they don’t know what a navigator is.”
She explains to them that her job isn’t to take over, but to guide them as they move through the phases of treatment.
“I always tell them they are the driver of the bus,” says Ms. Jones, who has herself had breast cancer. “They need to make their own decisions, but I can get them to the right resources and the right people to help them make those decisions.”
She typically stays connected with the people she helps for about a year after diagnosis, checking in from to time, answering questions or requests that come in, making referrals to support groups and providing words of wisdom when needed.
“I like to say ‘breast cancer sometimes takes up a year of your life, but don’t forget to live,’” Ms. Jones says.
Brenda Cline, RN, MSN, began a nurse navigation program for people with breast cancer at Jefferson Hospital, part of the Allegheny Health Network, in Pittsburgh, Pennsylvania. Since the program started in 2011, the average wait time from a positive breast cancer biopsy to breast surgery decreased from 29 to 16 business days, she says.
“My role is to provide a lot of guidance and education to help patients understand their diagnosis and treatment plan,” Ms. Cline says.
She sets up testing and other appointments, works with specialists involved in the person’s care and cuts through what may seem like red tape.
“Having to advocate for yourself is hard and the anxiety that comes with a diagnosis is huge,” Ms. Cline says, adding that an initial feeling of fear often subsides once the person shifts into action with treatment.
There has been research, Ms. Jones says, suggesting outcomes improve when nurse navigators are involved in cancer care. But, she says, navigators are still learning. She says more information is needed about providing long-term navigation services for people with metastatic cancer who may live many years with the disease.
I always tell people they are the driver of the bus. They need to make their own decisions, but I can get them to the right resources and the right people to help them make those decisions.
‘The Voice of the Patient’
“I was sitting there in shock. There was no way I could have done it,” says Tammy, recalling the day in 2015 that she learned she had stage IV breast cancer.
Tammy says she has benefitted from being in a program where care is coordinated, with her surgeon, oncologist and cardiologist all communicating with each other.
“I never have to relay messages among my various specialists,” she says.
Randi Solden, RN, BS, OCN, is a nurse navigator for breast cancer at Penn Medicine Virtua Cancer Program in Voorhees, New Jersey. People are referred to her by their breast surgeon at the time of diagnosis. She follows them throughout their treatment plan and connects them, as needed, to social services for emotional or financial needs, clinical trials, genetic counseling and a second opinion, if interested.
“I represent the voice of the patient,” she says, and “the goal is to empower the patient so they can ultimately advocate for themselves.”
Earnestine Tolbert, 63, of Grand Rapids, Michigan, has been on multiple sides of breast cancer — as a nurse (now retired) in an oncology unit, a woman going through breast cancer treatment, and now as an advocate for people with breast cancer.
She knows it can be confusing to deal with many doctors whom you may only see for minutes at a time. She volunteers to accompany women to appointments and offers them advice on how to get what they need.
“Be honest with your doctors and let them know exactly how you feel. If they say something you don’t understand, ask them to bring it down to your terms,” she advises.
Earnestine says breast cancer treatment can have some unexpected twists and turns. A navigator “helps smooth the way so you don’t have to worry about every little thing.”