EduCare Announces the Release of the Breast Cancer Survivorship Handbook

EduCare is excited to announce the release of the Breast Cancer Survivorship Handbook. This new book was built around a quote from the author, Judy Kneece, RN, OCN, “Survivorship is the challenge to no longer focus on cancer, but to focus on the gift of life after cancer.” This book is designed to empower breast cancer patients to build a better life for themselves when treatment is complete.

The Breast Cancer Survivorship Handbook addresses the next challenge for a breast cancer patient—managing her survivorship. Just like a breast cancer diagnosis, survivorship brings its own set of challenges and adaptations. Survivorship also requires managing psychological and social issues along with physical changes and follow-up care.

The Breast Cancer Survivorship Handbook empowers a patient to thrive by explaining lingering breast cancer treatment side effects and how to manage them. The book addresses the seldom-discussed issues of sexuality and the management of lingering depression and anxiety and, most importantly, what to do about them. Throughout the book are quotes from patients, inspirational thoughts to encourage and “how to” tips.

Topics Included in the Book:

  • Managing the Fear of Recurrence
  • Understanding Family Cancer Risk
  • How to Communicate With Healthcare Providers
  • Follow-up Care After Breast Cancer
  • Potential Side Effects After Breast Cancer Treatment
  • Caring for the Surgical Arm
  • Managing Fatigue After Cancer Treatment
  • Managing Menopausal Side Effects
  • Dealing With Memory Changes
  • Dealing With Body Image Issues
  • Fertility After Treatment
  • Dealing with Numbness in Your Hands and Feet
  • Managing Chronic Anxiety and Depression
  • Understanding Hormonal Medications
  • Making Personal and Legal Decisions
  • Spirituality’s Role in Recovery
  • Evaluating Different Cancer Treatments
  • Planning for a Healthy Lifestyle
  • Patient Resources
  • Tear-Out Work Sheets
  • Healthcare Symptoms Record

Included with the Breast Cancer Survivorship Handbook, is a Breast Cancer Treatment Summary, a Breast Cancer Treatment Summary Quick Reference Card and a Survivorship Care Plan folder.

Orders for the book 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

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

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?

 

 

Can Exercise Reduce Breast Cancer Risk?

We know you’ve heard about the many benefits of exercise to your overall physical and cardiovascular health. But do you know the relationship between exercise and your immune system, and its’ role in minimizing risk of getting certain types of cancer? Today we’ll explore how exercise can help minimize your breast cancer risk.

Exercise increases the body’s ability to provide adequate oxygen to your cells, which is essential for cell metabolism.  Increased oxygenation boosts the immune system, elevates  mood, and helps control obesity.  Evidence continues to mount that exercise later in life may become a factor for reducing breast cancer incidence.

A recent study recruited women with breast cancer from 31 hospitals in or near New York City. These cases were aged from 20 to 98 years old, and were diagnosed with breast cancer between 1996 and 1997. The controls were women who had never been diagnosed with breast cancer, and were matched to cases based on age. This is important, as age is a significant risk factor for breast cancer. The study included 1,508 cases and 1,556 controls to collect data for impact of exercise on breast cancer occurrence.

Study Outcomes:

When adjusting for age, the researchers found that:

  • Regular physical activity during adolescence was not associated with a difference in risk of developing breast cancer.
  • Women who reported engaging in 10 to 19 hours of physical activity during their reproductive (pre-menopausal) years had a 33% reduction in the odds of developing breast cancer after menopause, compared with women who reported no regular activity during these years (odds ratio 0.67, 95% confidence interval 0.48 to 0.94). No significant differences were seen at other activity levels.
  • Women who reported engaging in approximately 9 to 17 hours of physical activity during post-menopausal years had a 30% reduction in the odds of developing breast cancer after the menopause, compared with women who reported no regular physical activity during these years (odds ratio 0.70, 95% confidence interval 0.52 to 0.95).

How did the researchers interpret the results?

The researchers concluded that women can “reduce their breast cancer risk later in life by maintaining their weight and engaging in moderate amounts of physical activity”.

Back to the Basics

With all the vast number of treatments for breast cancer, most having numerous debilitating side effects, it may be time that we go back to the basics of good health and include exercise as a treatment recommendation to reduce breast cancer incidence. Exercise in moderation, based on the individual’s health, comes with many benefits and usually has no cost associated, unless one decides to join a gym or exercise class. Exercise may be the best value in reducing breast cancer incidence.  One thing is certain: Participating in regular exercise later in life will increase one’s overall health, improve mood, and control obesity.

Do you, as a Nurse Navigator, recommend exercise for your breast cancer patients? Does your Breast Center offer any programs to help facilitate patients’ exercise during treatment?

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

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.

Intra-Operative Pathology Margin and Node Assessment Prevents Additional Patient Surgery

Decreasing breast cancer patient morbidity is of foremost concern for a Breast Health Navigator and their multidisciplinary team.  Having breast cancer surgery is emotionally traumatic for a patient. Finding that a second surgery is needed because of positive margins or positive nodes, increases a patient’s physical morbidity and prolongs their emotional stress. Not only is the patient impacted, the costs associated with a second surgery are higher as shown by a recent study at the University of Michigan Comprehensive Cancer Center.  The study reported on the impact of intraoperative pathology consultation for breast cancer patients.

Methods: The center compared the 8 months before the establishment of a pathology laboratory, when intraoperative pathology consultation was not available, with the 8 months subsequent, when it was routinely performed.

Results:

  • The average number of surgeries per patient decreased from 1.5 to 1.23, and the number of patients requiring one surgery increased from 59% to 80%.
  • Re-excisions decreased from 26% to 9%.
  • Frozen section allowed 93% of node-positive patients to avoid a second surgery for axillary lymph node dissection.
  • A cost analysis showed savings between $400 and $600 per breast cancer patient, even when accounting for fewer axillary lymph node dissections based on the American College of Surgeons Oncology Group 2011 data.

Conclusions:

  • Incorporation of routine intraoperative margin/sentinel lymph node assessment at an outpatient breast surgery center is feasible, and results in significant clinical benefit to the patient.
  • Use of frozen section decreased both the time and cost required to treat patients.

American Journal of Surgery

Original Article Link:

ABSTRACT: Development of an intraoperative pathology consultation service at a free-standing ambulatory surgical center: clinical and economic impact for patients undergoing breast cancer surgery

Vast Differences Found Between BRCA1 ER Positive and ER Negative Breast Cancers

We recently came across this data that we want to share with each of you:

BRCA1 germline mutations are one of the main causes of hereditary early-onset breast and ovarian cancer. Recent analysis of BRCA1 mutations conducted by researchers from the Institute of Cancer Research in London, provide additional insight regarding estrogen receptor status of the breast tumor. When a woman has a genetic confirmation of a positive BRCA1 mutation there is a difference between a diagnosis of an ER positive or an ER negative tumor. In more than 80% of cases, tumors arising in BRCA1 germline mutation carriers are estrogen receptor ER negative; however, up to 15% are ER positive.

Researchers reported a summary of the following characteristics found in the study:

Characteristic BRCA1/ER Negative BRCA1/ER Positive
 
Age  participants 54 52
Sex Female Female
Histological grade 3 2
Mitoses/10 HPF 81 15
ER Negative Positive
PR Negative Negative
HER2 Negative Negative
BRCA1 mutation c.124delA/p.Ile42TyrfsX8 c.4485-?_4986 + ?del/p.Ser1496CysfsX14
Somatic BRCA1 wild-type allele* Loss Loss
TP53 mutation c.927_928delTA c.951C > T
Molecular subtype Basal-like Luminal B
Tumor cell content GAP* (H&E) 71% (70%) 42% (60%)

This study confirms for Breast Health Navigators that a diagnosis of breast cancer, even when we have a confirmation that the tumor is BRCA1 positive, may vary in characteristics of the tumor.

The Journal of Pathology (2012); Pathological Society of Great Britain and Ireland

Nurse Navigators Ease the Journey of Uncertainty

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

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?