Category Archives: Nurse Navigation

Being a Product of the Product: Pilates and Breast Health Navigators

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Used with permission from Balanced Body

“Be a product of  the product.” That’s the mantra of EduCare founder and registered nurse Judy Kneece. And it’s solid advice for those who believe they should practice what they preach. But it takes on a different meaning when you discover what business EduCare is in.

EduCare founder Judy Kneece on a Reformer at the company’s headquarters

 “We train breast health navigators,” says Judy. “These are nurses who meet with patients as soon as they hear the understandably scary words ‘You have breast cancer.’” EduCare’s navigators coach the patient for the entire continuum of breast cancer care, from pre-surgery through surgery, chemotherapy and beyond.

EduCare has trained over 2,300 navigators who work in hospitals and breast centers all over the world since it opened its doors in 1994.

Three keys to recovery

Judy says it is crucial for a navigator’s patients to understand that there are some things in recovery that no one can do except themselves. After that steely mindset has been established, a breast cancer patient must understand three principles for recovery:

1.       Positive thought

“Every thought we have causes a cascade of chemicals that washes through our body. They can have a positive impact when we think of joyful, peaceful, helpful thoughts. But when we think of negative things like anger, fear and worry, these thoughts actually have a paralyzing effect on the immune system. It impairs recovery. The patient has to realize that they alone can determine what and how they think.”

2.       Nutrition

“Patients are responsible for everything they put into their mouths. Chemotherapy and radiation therapy “kill” cancer cells but “damage” healthy cells that have to be repaired. Only nutrients can do this and only the patient can really dictate what she eats. Every spoonful has to count.”

3.       Movement

“Exercise is a necessary component of healing. The body’s cellular waste sits in the lymphatic system until we move it out. Unlike the vascular system, the lymphatic system does not have a pump. Without exercise to help move fluid through the lymphatics, we actually become a toxic waste dump – particularly for patients in chemotherapy. It is the muscular contractions around the lymphatic that cleans our body and greatly facilitates recovery. Exercise also reduces fatigue, helps alleviate pain and elevates the mood of patients.”

Being a product of the product

For Judy, it’s not just the patients who have to comply with these principles; it’s the navigator’s responsibility as well. “You can’t teach what you don’t do yourself. It comes off as insincere,” she says. “During my training sessions I create a positive environment where the navigators experience exactly what we want them to teach their patients.”

At the four days of intensive training, the navigators eat nutritious meals, learn to think with a positive thought foundation, and are introduced to gentle movement. All of this helps them switch from the clinical focus ingrained in most nurses to actually building a healthy, healing environment in their own bodies.

Pilates is a big part of that.

“I have done Pilates for ten years,” Judy says. “I know what it has done for my body and I have seen magnificent results in other people as well. It is my first recommendation to patients as a method of exercise. Pilates empowers the breast cancer population because it is extremely effective yet gentle on the body. A breast cancer survivor has to move in order to heal, but many types of post-surgery exercise can hurt them. Pilates is the exception.”

Throughout the EduCare training session, Judy employs a trainer (also a Pilates instructor) to introduce Pilates and yoga to the navigators. They learn mat exercises and are encouraged to find a mind-body exercise program near their home or work. Judy also uses a DVD with specific exercises for breast cancer patients to restore range of motion to the surgical arm. “The video is key, because the navigators can buy it and loan it to patients for home use,” she says. “Or – if approved by the patient’s doctor and physical therapist – they can actually design a home exercise program for their patients.”

Pilates has become such a big part of EduCare’s program that Judy recently bought two Reformers for the EduCare office. “We have them in our “energy break” room and we are thrilled to be able to use them,” she says. “It is so good for both the body and the mind and really refreshes us so that we are at the peak of our game.

“And we really are playing a life-changing game.”

EduCare Announces the Release of the Eighth Edition of Breast Cancer Treatment Handbook

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EduCare is pleased to announce the release of the eighth edition of the Breast Cancer Treatment Handbook. First published in 1995, this easy-to-use book features the newest treatments, continuing research about survivorship, graphic illustrations and practical tips for helping the patient navigate the cancer journey.

With more than 295,000 copies in use, the Breast Cancer Treatment Handbook is a trusted patient navigation guide for up-to-date clinical information, clear explanations of tests and treatments and recommendation-free guidance. The new edition now offers additional material on emotional recovery, survivorship and healthful living. Eighteen tear-out worksheets help a patient prioritize and organize the questions she must ask her medical team in order to actively participate in her treatment. An expanded glossary, a drug reference section and an updated resource list further empower patients.

“Understanding the disease, treatments, emotions and recovery from breast cancer is just as important as the medical treatment a woman receives,” says Judy Kneece, R.N., OCN, President of EduCare. “We wrote this book for every woman diagnosed with breast cancer to inform and empower them with a complete road map for their journey from diagnosis to recovery.”

EduCare Inc., a dedicated breast health education company, was founded in January 1994 by Judy C. Kneece, RN, OCN. In the past 18 years, Judy has trained over 2,200 breast health navigators to guide patients through their cancer journey.

The eighth edition of Breast Cancer Treatment Handbook is available directly from EduCare. Orders may be made through the company website at www.EduCareInc.com or by phone at 843-760-6064.

Access to Oncofertility Options for Rural Cancer Patients

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Cancer Navigators working in smaller rural cancer centers often face a challenge in arranging a timely fertility consult for a newly diagnosed cancer patient. Time constraints due to the need to begin cancer therapy, along with the distance required for the patient to travel for the consult, frequently cause patients to forgo the fertility preservation options discussion before treatment. Following cancer treatment, many patients want to investigate their fertility options.

Cancer Navigators not working in a facility with a fertility specialist, now have access to an online  Fertility Patient Navigator, providing the opportunity to better educate young patients about fertility options.  The new website, hosted by the Department of Obstetrics and Gynecology at Northwestern, has been designed to assist young patients in learning about their reproductive options in the midst of a cancer diagnosis or after treatment for cancer. The website, Patient Navigator for Fertility Preservation, provided by the Oncofertility Consortium of Northwestern University, has a Fertility Patient Navigator, Kristin Smith, available to answer questions about reproduction options surrounding a cancer diagnosis. She is experienced in talking to patients and providers about the best reproductive options for cancer survivors at all stages of treatment.

The web site has an interactive tool to provide information for patients before or after puberty, and before or after cancer treatment.  At his/her convenience, the patient can watch tutorial videos explaining how fertility is impacted by chemotherapy, radiation therapy or surgery.  Personal stories from others who have selected different types of fertility preservation are also available for viewing. This new website should be an excellent resource to help Cancer Navigators educate their patients about fertility options.

Have any of you working in rural areas dealt with this issue? How have you managed it?

How to Conquer the Fear of Cancer Recurrence

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Fear of recurrence is the number one reported fear of cancer survivors. A cancer patient laments, “I thought that once I completed cancer treatment I could go on with my life. Instead, I have found myself hypersensitive to every ache and pain and dreading my follow-up visits to the oncologist.”

This cancer survivor’s confession is all too common. Having escaped a death sentence, many survivors are now serving a new life sentence in a prison of fear. The fear of cancer recurring has robbed them of their joy and energy. To heal completely, survivors often find that they have to relearn how to live. This should be a major goal of a Navigator—helping patients gain a new perspective on life after cancer.

Having cancer is similar in some ways to other traumatic experiences such as the death of a family member or being in a car wreck. Facing the suddenness and severity of life and death issues changes something deep within. One thing that changes is one’s outlook on life. One survivor said it was like “repricing everything around her with new price stickers.”  Surviving cancer makes one conscious of what was almost lost and what can never be regained. This awareness makes some afraid that they may again face the trauma of cancer. Some survivors develop Post Traumatic Stress Disorder (PTSD), a state in which life is significantly altered by these fears.

In the same way, someone does not stop driving after a car wreck or having friends after someone they love dies, a person cannot stop living and working towards a positive life after cancer. A survivor must find ways to overcome their fears and return to a sense of “normalcy.”  However, what one decides is normal will have to be redefined because cancer has changed the way they see things.

Cancer interrupted a life already in progress. Old dreams and goals may have died along the way. It’s important that survivors grieve for those very real losses. Those with a heightened sense of fear may not have sufficiently dealt with the trauma that cancer caused in their lives. Since they are dealing with both present fears and issues from the past, their coping measures may not be sufficient. Identifying their losses and making peace with them will help them live a fear-less life.

Navigator Tips for Helping Patients Overcome Their Recurrence Fears

Challenge Survivors To:

  1. Identify exactly what you fear and do all that you can reasonably do to prevent it. Make a plan to improve your health. Write your planned changes down so you can review them and work your plan.
  2. Schedule and keep regular check-up appointments to monitor your body.
  3. Write a letter to fear. This may sound silly, but it works. Write it with a “revengeful attitude” and tell FEAR that you will no longer listen to its constant taunting. Tell fear how you chose to think, believe and live instead. Without an “instead” plan you will rubber-band right back into fear.
  4. Try an experiment. Write down every little thing you enjoy and are grateful for. See how you feel after five full minutes of writing. Schedule time to be reflective and grateful every day. Develop your attitude of gratitude. Plan to start writing short notes to people who touched your life for the better. Tell them now grateful you are for what they did and for what they mean to you.
  5. Develop an emergency kit. This kit can be a letter to yourself reorienting you on how you want to live and what you will think and believe. Ask a friend to be your emergency kit. Teach them to let you vent and then remind you of your chosen beliefs.
  6. Make a plan for what you will do if cancer does recur and how you will live if it happens. This sounds hard, but when you face this mentally and make plans there is a sense of power knowing you have plans, no matter what happens.
  7. Determine to live a positive, faith-filled life. It is has a positive effect on your immune system. Build, buy or make something that reminds you of your choice to live positively in the present.

Fear paralyzes a person. Conquering the fear of recurrence is essential for a cancer patient to reenter life as a triumphant cancer survivor. Many survivors are living life free of disease, but prisoners of their fears of recurrence. Navigators can be the catalyst to help change her perspective of recurrence into a manageable fear. Navigators can coach the patient on how she can transform her fear into knowledge and empower her to live life as successfully after cancer as she did before cancer.

These are some of our suggestions that our Nurse Navigators and patients alike have found helpful. What other steps have worked for you?

 

 

Dr. Ruth O’Regan: Featured Speaker at Educare Training this September

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For those of you visiting our Blog for the first time, we want to let you know that we have an exclusive, annual Breast Health Navigator Training at Emory University Conference Center in Atlanta. This year’s training takes place September 17- 20.  EduCare has been training Navigators for 18 years and over 2,200 nurses have attended the training.

This year’s training promises to be our best yet.  We say this because we are very excited to have, Dr. Ruth O’Regan, practicing Oncologist at the prestigious Emory Breast Center, who will teach the oncology treatment modules. Dr. O’Regan currently serves as an Associate Professor of Hematology and Oncology at the Emory Winship Cancer Institute and is the Director of Winship’s Translational Breast Cancer Research Program.

One of the most challenging roles of a Breast Health Navigator is understanding and discussing cancer treatments with a patient after surgery.  Drugs for chemotherapy are constantly changing, as is the delivery of radiation therapy.  New gene testing and targeted drugs are now a mainstay of oncology treatment.  The body of breast cancer treatment information is large, often complicated, and changes rapidly.  For nurses without an oncology background, cancer treatment navigation may be intimidating. Determining what is important to understand among the vast array of options is essential for effective patient navigation.  Because patients look to their Nurse Navigator to help interpret a physician’s treatment decision, a Navigator needs to feel competent to answer basic patient questions about chemotherapy, hormonal therapy, radiation therapy and the management of their side effects.

Dr. O’Regan brings her front-line, hands-on experience, to prepare Breast Health Nurse Navigators for the role of educating, supporting and navigating breast cancer patients through treatment.  She will condense the vast body of breast cancer information into the basic essentials that you, as a Navigator, must know to educate and empower your patients.

Starting with how treatment decisions are determined for a patient, Dr. O’Regan will:

  • Explain the most recent guidelines and treatment essentials a Navigator needs to understand to support a patient throughout chemotherapy, hormonal, and radiation therapy treatment.
  • Discuss the emotionally charged issues of fertility preservation for young women and treating a woman who is pregnant.
  • Teach Navigators the signs and symptoms of recurrence and the latest practice standards for the treatment of recurrent breast cancer.

We know you will benefit greatly from Dr. O’Regan’s expertise on these topics, and we can’t wait to have you join us in Atlanta. You can register for our conference here. We’ll also be glad to answer your questions in our comment section, or if you prefer, call us at (843) 760-6064 or reach out to us online here.

Nurse Navigators Ease the Journey of Uncertainty

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“Cancer transforms a person’s life from one of general well-being and confidence to one of enormous anxiety and uncertainty about the future. A pervasive sense of uncertainty characterizes the journey more than anything else.”  Dr. Jimmie Holland

Shocked, helpless, numb, confused, hopeless and seeking direction as to what she needs to do next describes the patient after hearing she has a breast cancer diagnosis. The patient, who most often is feeling physically well, has just heard words that will forever change her life. The diagnosis has just given her an entrance ticket into the world of cancer treatment—a world of unknowns, a scary place filled with many physical and emotional challenges. These challenges create a mental journey that is characterized by an evasive feeling of uncertainty.

Uncertainty is described in the dictionary as: doubt, unpredictability, indeterminacy and indefiniteness. After a cancer diagnosis, most patients feel that their body has betrayed them. Can they dare trust their own body again, or will it betray them again?  This is combined with the uncertainty of treatments. “What is the best treatment?  Will treatment work?  How can I get answers to my questions?  How long will this last? Will my cancer come back? Does anybody care about what happens to me?”

It is at this time of uncertainty that the Cancer Navigator comes into the patient’s life to help them deal with their overwhelming sense of uncertainty. As a trained Cancer Navigator, you can step into their world of fears and act as an anchor to hold on to. You come to their emotional rescue as a knowledgeable person who will navigate them through the unknowns of cancer treatment. You are a trained guide. You know the general direction of their treatment path. You know the various stops along the journey of treatment—surgery, chemotherapy and radiation therapy—and what they require. The overwhelming good news for the patient is that you are committed for the entire journey.

In a sense, you are like a GPS helping to map out their predicted journey. Like a GPS, if they get off course, you are there to help them find their way back or to find a suitable detour that will still get them to their destination. Just as a GPS serves as a sense of direction and safety when we are on a trip, we serve as a prepared guide for their cancer journey ready to offer directions without demands.

As a Navigator, your very presence and commitment for the journey reduces a patient’s uncertainty to a manageable level. You calm their emotional anxiety and reduce their fears with your navigation skills. Your presence is as valuable as any medical intervention to their recovery.

Navigator Challenge: Ask, Hear, Respond

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How do you approach the psychological and emotional healthcare experience of your patients?  Do you consider them an expert in the process?

We do. In fact, one of our guiding principles is that the patient is the first expert on managing their care experience. They know what they need, what works, and what doesn’t work, in their care. Thus, we believe that your crucial first step as a nurse navigator is to ask, hear and respond to to the needs of your patient.

Why do we feel this way? As healthcare providers, we specialize in training Nurse Navigators to guide patients through the journey of breast cancer, with all its twists and turns of diagnosis, treatment options, life changes and adjustments, and the myriad of emotions they and everyone affected around them encounter along the way. Yes, we as navigators know much about breast cancer: its causes, diagnosis, treatment and recovery.  What we don’t know is the individual needs of each patient who sits in front of us with a new diagnosis; these needs are a secret to be uncovered to ensure a successful psychological recovery.  Taking the time to ask and hear before we respond can be  a challenge in the face of the many tasks we have to perform daily, yet it is the most important component to our patient’s psychological safety.

One of the mental tools you can employ to stay grounded and remind yourself of the importance of taking the time to discover a new patient’s unique needs is to think, each time you pick up a new patient’s chart: “This could be my Mom or daughter, how would I want someone to treat them?”  It works! This technique taps into your empathy and reminds you of this person’s relationships and important life roles she has, much like your own. It reinforces her uniqueness and the fact that she is a special person who needs your undivided search for her needs. Finally, it also helps you remember not to impose any preconceived ideas of “what’s best” on her treatment journey.

It is only when we slow down at the beginning of the journey to discover this valuable information by asking questions and listening for her reply that we uncover what she needs.  Her needs, added to our medical interventions help make this unexpected, unwanted journey into the scary world of cancer treatment more bearable.  As Breast Health Navigators, we are the members of the interdisciplinary team that serve as her voice.  These needs and desires are only revealed to us when the patient views us as a trusted member of her healthcare team who cares about her personal needs.  So, slow down, take the time to tap into her heart to discover her recovery needs and them give voice to them as treatment decisions are made.  Navigation at its best is to ask, hear and respond.

What insights have you gleaned from your patients with an “Ask, hear, and respond” approach? How have these insights helped you become an even better advocate for your patients?