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Navigating Breast Cancer

Navigating Breast Cancer

Young women facing a breast cancer diagnosis and treatment often find it challenging to juggle treatment with caring for their family, the demands of their job and other pressures of day-to-day life. Enter the patient navigator. Patient navigators Jill Mull, M.Ed., and Elizabeth Saylor, M.S.W.—both cancer survivors—work primarily with breast cancer patients ages 45 and younger as part of Johns Hopkins LiveWell Center, helping women balance their priorities, get connected to resources and overcome barriers to care. They collaborate with a patient’s breast cancer team to give women the best experience during a difficult time.

Q: How do patient navigators help women?

MULL: A lot of young women who are going through a diagnosis of breast cancer have very specific needs that can’t all be met during their medical appointment. For example, they may need some help overcoming barriers to care or wish to be connected to resources. We spend time informing them about what is available to them and helping guide them through their cancer journey.

SAYLOR: We work together with young women to address some of the competing priorities that they have in their lives in addition to their cancer. There’s never an “ideal time” to have cancer, but in young adulthood—your 20s, 30s and 40s—there are many things that women are investing their energy and emotion in, like having a family, starting a new job, or going to college or graduate school. Cancer comes at a time in their lives when they are developing new relationships and solidifying their identities as working professionals, mothers and wives/partners. All of these experiences are made extra challenging by a cancer diagnosis, so part of our role is to connect patients to resources and help them figure out which ones will best help them with their cancer and other priorities.

Some of these resources are outside of Johns Hopkins, and some have been developed here by our LiveWell Program colleagues. We run support groups, and we have webinars on the Breast Cancer Program website on treatment, survivorship and other key issues related to young women, plus other unique offerings like Rebecca Katz’s Cancer Fighting Kitchen cooking program.

Q. What about family and friends?

Saylor: Help is good, but accepting it and organizing it can also be challenging. Young women are very independent; we want to be in charge of our families and our lives. Jill and I work with patients so they can be open to assistance on their terms. We offer tools to help patients manage support from friends and family. It’s ok to say, ‘This is what I specifically need, or even, no, that isn’t going to make things easier for me.’ We tell them about on-line tools that can help and always encourage them to deputize a few good friends or family members to be the “help managers.” We also work with patients to help them stay connected to friends who are getting married, getting new jobs, or having children. When you’re not able to do those things because you’re in treatment or in survivorship care, patients may feel cut off from their peers.

Q. What happens when patients finish treatment?

Saylor: Navigation has value at all points in the cancer trajectory. Moving into off-treatment survivorship women can feel a mix of emotions, and Jill and I are there to serve as guides and remind women that their feelings are normal. It is ok to be relieved treatment is over and, at the same time, feel true grief at not seeing the members of the medical team on a regular basis. Many women describe ending active treatment as an emotional time when they truly start to process what has happened to them. Without the distraction of chemotherapy and radiation schedules, frequent doctors’ appointments, writing down symptoms, patients start to worry: “What does all this mean for me? For my family and career? What is my new normal? Will my cancer come back?”

Jill and I also work with our social work and palliative medicine colleagues to support families through end of life. We work with the medical teams to enhance decision making around stopping treatment and entering into hospice care. We help women talk about very difficult stuff: What does your family need for the future when you are no longer there? What would you like to leave for your children? What are you most afraid of? What brings you joy, and what can we do together to help you experience this in the remaining months and days of your life?

Q: How can patients find you?

Mull: We identify any young new patient coming in for their first appointment. We will actually come in to that appointment with the medical oncologist and listen to their social and medical history because their past experiences are going to impact their care. Then they don’t have to tell their story twice. Generally, at that first appointment, the patient’s anxiety and stress is pretty high, so we can help to mitigate some of those factors by identifying a patient’s particular needs, whether she needs a referral to a therapist, help connect her children to other children going through similar circumstances, or assist with fertility, work, finances, diet, exercise, sexual and other side effects, genetic counseling, or anything else that’s particular to their case. Survivorship for people living with early stage disease can be a very long time—50, 60, 70 years—so that’s also part of our mission. We stay with them throughout treatment and into survivorship and also help make legacy plans.

Q: How often do you connect with your patients?

Mull: We tailor it to each individual’s needs. We might stop by and see patients while they’re having chemotherapy, follow up with a phone call or email if they’re waiting for test results or if we know they have a specific need that we are researching for them. We may see them at their next appointment, or even in the waiting room, and just check in and see how they’re doing. We also connect with them at monthly support groups we run for stages 0 through 3 and for those living with advanced disease. That’s a time when they also can connect with each other, which is a really helpful environment for most young women.

Saylor: Based on a patient’s planned treatment protocol, you can predict some parts of their cancer trajectory that might be more difficult, such as starting a different kind of chemotherapy or finishing treatment entirely. Those are points where we would really want to check in with the patient, ideally in person, but if we can’t, then we can email or call them. We also try to make sure that young women and their families know that they can reach out to us whenever they need us. We give them the power to say, “I need a little help with something,” or, “Things were going really well but now I’m hitting a snag, and I wonder if you can help.”

Q. You both have personal connections to cancer. Did that motivate you to become a navigator?

Mull: Absolutely. I was diagnosed with breast cancer at 32. My twins were 4 years old at the time. I think that knowing that I have firsthand experience of going through chemotherapy and hormonal therapy and medical oncology and surgery really helps the patients. I had so many people calling me after I was diagnosed asking me to talk other newly diagnosed women. This position opened up, and it worked out that I could do this and give back to others. I can’t explain how grateful I am for that. I share my story when it’s appropriate and it helps the patients have some hope to see that, 12 years later, I’m here and helping others and helping them navigate their own journey. I can offer tips to help make their chemotherapy a little bit easier or help prepare for what to expect in the future. We really have a lot more time to spend with the patient so we can develop a relationship with them. They might mention something about their child having some problems and then we can connect them to the proper resources. There are things they might not have the time to speak to the doctor about.

Saylor: My experience is a little different. I had cancer as a child. It was hard, but I was very fortunate that my parents had health insurance and that my mom (later diagnosed with breast cancer when Saylor was in college) was a homemaker so she was able to take me to treatment and manage the majority of my care. I didn’t have all of the other responsibilities that a young adult has. I didn’t have to worry about what to tell my boss or if I needed a career change or who was going to pick my kids up from school when I was too sick to even get out of bed.

Q: What do you enjoy about the job?

Mull: It’s an advantage in a way not being a medical professional. I don’t know how to cure cancer, what chemotherapy is best or which surgery to choose, but I think when a young woman has cancer, it affects the whole person and the family and the community. I like that I can offer any assistance to make that journey easier by sharing my experience or connecting them to the appropriate resources, guiding them through a difficult side effect or managing expectations. Just watching the patient feel a little bit relieved or less anxious and fearful while waiting for chemotherapy is a very rewarding experience because I remember how I felt when I was going through it.

Saylor: The opportunity to see people rise to the challenge of what, for many of them, is the worst thing that has ever happened to them. Witnessing resilience and the human capacity for emotional growth, even those times when the ultimate outcome is not surviving their cancer. Jill and I are so fortunate to work with an extraordinary team of oncology professionals who value each patient as an individual. These oncologists, nurse practitioners, nurses, and other caregivers recognize that Jill and I have the time to invest with these women and their families and they support our work with their patients.

Q: What type of response do you get from patients? Are they relieved to have you on their side?

Mull: The patients’ and caregivers’ responses are so positive. A man was moved to tears recently at an event we did. He had never really talked to anyone about what his wife was going through, and he said to me, “If I hadn’t had you, I don’t think I could get through this, because you were the only person I could talk to.” It really touched me to realize that, through everything he was doing to care for his wife, I could be some support to him. It was very gratifying, and it’s what makes a difficult job better, knowing that you can make a difference; any difference.

Saylor: My approach has always been to give people gentle reminders periodically. Every patient is different. For the most part, we go with what the patients’ needs are without a set structure. There are people who want to connect the minute they get diagnosed and there are those who don’t want to connect. Sometimes that changes over time. I’ve found over the years there are people who in the beginning say, “Nope, I don’t need any help. “No thank you, I’m fine.” About 75 percent of those folks later reconnect and say, “You know, I didn’t really need anything in the beginning, but now I need help with this,” or, “Now I’m really struggling with this.”

I’ve noticed over the years that in some families, the caregivers need more support than the patient, and that’s OK, too. We’re available for them. We don’t bill for our services. We’re paid through philanthropic money and grants so there isn’t any timeframe in which we need to work. If a patient needs us for an entire day, we’re going to spend that entire day with them. We have flexibility and the families really appreciate and respond well to that.

Q: What else do you think our readers need to know?

Mull: We also work with patients living with advanced disease. Some patients will die from their breast cancer, so we prepare them for palliative care or hospice. It’s important that they get help with legacy work too, sitting down and taking time to purposefully create something for the people you love and care about.  This may include writing cards to children for future milestones to convey their advice, audiotaping themselves reading a story to play for their children or creating a video of their family history to share with future generations.  Legacy work isn't about death and dying, it is about life and living.  It is about sharing precious moments with those you love.

Saylor: Some women who come to us are living really challenging lives, beyond the traditional or expected barriers of young women in general. They may be living in poverty or may not have a regular physician. Their lights may not be on all the time or they may not have access to transportation. Helping them with these obstacles is a vital component of navigation, too. We want to make sure that those women receive excellent care as well and offer a little extra help because of the additional obstacles they they’re facing.

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