Although you may be feeling alone having just been diagnosed with breast cancer, let me assure you that you are not. There is a multidisciplinary team of professionals working to empower you, educate you, support you, and guide you through this journey. Your nurse navigator is the key person on that team to connect with throughout the entire course of your experience. A nurse navigator has many roles. He or she will be an educator for you and your caregivers, an emotional support person, a coordinator of your care, and the person who will strive to eliminate any barriers that prevent you from getting the treatment you need in a timely and complete manner. But most importantly, your nurse navigator is your advocate. I’d like to take a look at each of these roles and discuss why each is important to your care.
Navigators are educators. You will receive a lot of information regarding your diagnosis, the various phases of treatment, potential side effects and late effects, financial considerations, and the potential risks and benefits of each treatment option. Your nurse navigator will be there from the start to explain it all in layman’s terms to ensure your understanding and improve your ability to actively and more confidently participate in treatment decision-making.
You will have the opportunity to share your preferences in obtaining information. Whether you learn best through pictures and graphics or written materials, it’s important that you discuss your preferences so your navigator can provide educational materials in ways that are best for you.
Your nurse navigator will also provide education to your family and caregivers, particularly those helping you during your treatment. As the patient, you can inform your navigator of the degree to which you’d like your family/caregivers to receive details of your diagnosis and treatment plan, but your caregivers should understand some basic information on how to best support you. Some examples include how to change dressings after surgery, planning transportation for appointments and chemotherapy treatments, picking up prescriptions from the pharmacy, preparing appropriate meals, helping you cope with side effects such as nausea or fatigue, and understanding your risk of infection. For all of these situations, your nurse navigator can provide your caregivers with specific information that will enable them to carry out their role well. Caregivers may also need advice on how to cope with their own fears and emotional stress regarding your diagnosis. The nurse navigator can help your loved one with this as well.
Although family and friends will do their best to provide emotional support, you may be hesitant to share all your thoughts and fears with them because you don’t want to cause additional worry. Your navigator is ready to listen to your worries at any given moment, help to put your journey in perspective, and teach you coping skills. Make a point of telling your nurse navigator what concerns you.
Before you meet with any member of your treatment team, you should be prepared to answer these questions:
- How much do you know about your cancer?
- How much do you want to know about your cancer?
- What are you most worried about?
- What are you currently hoping for?
- What are 3 things that bring you joy?
The answers to these questions help your team to get to know you and provide the emotional support you deserve.
Coordination of Care
It is rare that a patient with breast cancer receives only 1 type of treatment. There are many tests that are needed at various points in time. All of your treatments and tests require coordinating. For example, a diagnosis may trigger the need for additional genetic testing. A breast MRI might be needed if the cancerous lesion is difficult to see on a mammogram or ultrasound. A patient may have a cardiac history that will warrant input from their primary care provider, cardiologist, and an anesthesiologist before a surgery can be scheduled. Chemotherapy may be part of your treatment. You might require radiation treatment. A clinical trial may be part of your plan. Prescriptions are needed and must be taken as prescribed to prevent or diminish side effects. Someone needs to make sure that all of this is included in a clearly organized care path. That care path may change along the way as new test results are obtained. Your nurse navigator is instrumental in coordinating, organizing, updating, and communicating that care path.
Resolving Barriers to Care
There are many barriers that can prevent patients from receiving the treatments they need. A patient may not have money for the copay and deductible and may therefore decline getting chemotherapy. There may be cultural barriers that impact the choices a patient may make about receiving (or not receiving) certain treatments. A patient may not be able to afford to take time off from work to receive care. The most common barriers are transportation and financial considerations. There are financial resources provided by pharmaceutical companies to enable qualifying patients to receive their drugs at a discounted price. There are many advocacy organizations that provide free transportation for patients while in treatment. There are even organizations that help with mortgage payments, house cleaning, and childcare. Your navigator can work with you to identify your barriers and come up with solutions to eliminate them.
Your nurse navigator is truly your advocate. He or she is the person you will likely be in contact with most frequently while receiving your treatments and is your voice at team meetings where your case is reviewed and discussed.
As your advocate, your navigator will inquire about any milestones that are coming up in the next 6 to 9 months in the hope your treatment can be planned around that event. Your navigator should also ask about your life goals. A patient might say that she is hoping to start a family in 3 years. If chemotherapy is part of the treatment plan, fertility preservation needs to be initiated. A patient may report how important her career is to her; she is up for a big promotion and wants to work as much as she can during her treatments. The navigator could orchestrate her lumpectomy surgery on a Friday in the hope that she is well enough to return to work on Monday. Radiation could happen before or after the patient’s workday, and chemotherapy could be given on an afternoon that is followed by 2 days off, when side effects are most likely. In sharing your life goals, you aren’t allowing breast cancer to take anymore of you than it has to. Don’t sacrifice joyful milestones or give up life goals to this disease. Your navigator can help you to attend those important events and accomplish your life goals.
My encouragement to you is to take the time to get to know your nurse navigator as you embark on a journey you never imagined you’d have to take. Your navigator will make the experience as smooth as possible and will empower you to confidently participate in your care.