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BREAST CANCERSPECIAL ISSUE SERIES

the patient voice™

FEBRUARY 2020 SUPPLEMENT 1 OF 4

If you’ve recently been diagnosed with breast cancer, taking action quickly is important. Knowing your options is justas important.

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If you’ve recently been diagnosed with taking action quickly is

important. Knowing your options is just



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CONQUER: the patient voice, ISSN 2475-823X (Print); ISSN 2475-8248 (Online), is published 6 times a year by Green Hill Healthcare Communications, LLC, 1249 South River Rd, Suite 202A, Cranbury, NJ 08512. Copyright © 2020 by Green Hill Healthcare Communi cations, LLC. All rights reserved. CONQUER: the patient voice logo is a trademark of Green Hill Healthcare Communications, LLC. No part of this publication may be reproduced or transmitted in any form or by any means now or hereafter known, electronic or mechanical, including photocopy, recording, or any informational storage and retrieval system, without written permission from the Publisher. Printed in the United States of America.

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FOREWORD4 The Importance of Receiving Patient-Centered CareBy LILLIE D. SHOCKNEY, RN, BS, MAS, HON-ONN-CG

CANCER MYTHS 5 Three Myths About Triple-Negative Breast Cancer

SPECIAL REPORT6 Triple-Negative Breast Cancer: One Woman’s ExperienceFrom Breast Cancer Survivor to Champion for Other African American Survivors

By KRISTIN SIYAHIAN

SURVIVORSHIP 10 Difficult Conversations: What to Expect When You Share the News of Your DiagnosisBy CAROLYN BYRD, RN-BSN, CBCN

TREATMENT12 The Role of Your Breast Cancer Nurse NavigatorBy LILLIE D. SHOCKNEY, RN, BS, MAS, HON-ONN-CG

PALLIATIVE CARE15 The Truth About Palliative CareBy LILLIE D. SHOCKNEY, RN, BS, MAS, HON-ONN-CG

EMPOWERMENT17 Patient Empowerment and Shared Decision-MakingParticipating Confidently in Your Care

By JORDAN HENDERSON, BSN, RN, OCN, ONN-CG; BRANDY MEIERHOFER, BSN, RN


foreword

Welcome to the first in a series of 4 special issues of CONQUER: the patient voice™ dedicated to the topic of breast cancer. Whether you have been diagnosed recently with breast cancer, are in the midst of active treatment, or are receiving continuous treatment for advanced breast cancer, it is important that you are receiving patient-centered care.

So what is patient-centered care? It means that you are much more than a breast cancer diagnosis. You are a woman who had a life before breast cancer and will continue to have a life during and after treatment. In a tumor board meeting of healthcare professionals, you may be referred to as a “54-year-old woman with a newly diagnosed breast cancer that is clinically stage 2b and triple negative.” However, you are far more than just your age and pathology results. You are a school teacher who loves teaching kindergarten students and have been a teacher for 16 years. You are a divorced, single mother raising a special needs 7-year-old boy with Down syn-drome who loves playing with dump trucks. You are con-cerned about whether your insurance plan will cover all or most of your treatments because you don’t have a lot of savings at the present time and don’t anticipate that changing in the foreseeable future. You are concerned that your ex-husband may give you more grief than usual when he learns you are undergoing cancer treatment. Your mother is already driving you crazy wanting to be in control of your life again as if you are a child needing adults to handle decisions about your treatment options. The only 2 women you have known with breast cancer both died. You love reading and knitting and watching “Dancing with the Stars” on television, wish you could have lived a life that looked more like a Doris Day movie, and need to remain the primary caretaker of your son. You want to continue working during your treatments if that is feasible, and you aren’t sure whom you should or shouldn’t inform at work about your diagnosis. You are worried that having been a smoker in the past for 6 years caused the breast cancer. Your sister is getting married in 3 months; you are her maid of honor and don’t want to miss her wedding or feel ill during that important milestone in your sister’s life. Your son can already sense the tension

in your home and has started acting out. You need help wrapping your mind around all of this. You want to be empowered with information that you can really under-stand about your diagnosis and treatment so that you can actively and confidently participate in decision-mak-ing at each phase of your treatment. You want a patient advocate ASAP who can help you as you begin to sort through what may lie ahead of you.

What does this all mean? If the team taking care of you doesn’t know the real you, then they will be unable to provide the patient-centered care you need. This is care delivered to a patient based on really knowing her as a person—what is important to her, what she is most worried about, what she is hoping for, what brings her joy—and engaging her in becoming a member of her own health-care team. You don’t want things done “to you”; you want to participate in decision-making about your care to the degree you desire and have treatment decisions made based on what is important to you.

Remember, you are more than your diagnosis, more than your pathology. The scenarios I wrote above are just for you to ponder. You are an individual. There are no 2 women like you. Let your treatment team know who you are so you can receive the patient-centered care you deserve. This includes factoring into your treatment plan significant milestones, such as a sister’s wedding, so it is preserved and not forfeited to breast cancer; dovetailing a treatment schedule with a work schedule (such as radi-ation treatments before the school day begins); getting help with your son, who is already feeling stressed sensing something is wrong; getting resources for your mother so she will stop trying to convert you into a child again; get-ting financial resources when needed, and coping with this diagnosis and whatever may lie ahead of you.

Oh, and your patient advocate? Your primary advo-cate will be your navigator. Sit down with her early on and share with her who you are as a person, what worries you currently, what you are hoping for, and how to get some control over a medical situation that is no doubt frighten-ing. She will be able to provide you resources, education, and some peace of mind.

Now turn the page and let’s begin empowering you!

The Importance of Receiving Patient-Centered CareBy LILLIE D. SHOCKNEY, RN, BS, MAS, HON-ONN-CGUniversity Distinguished Service Professor of Breast CancerProfessor of Surgery, Johns Hopkins University School of MedicineCo-Developer of Work Stride: Managing Cancer at Work, Johns Hopkins Healthcare SolutionsCo-Founder, AONN+; Editor-in-Chief, JONS

Co-Founder


cancer myths

Three Myths About Triple-Negative Breast Cancer

To determine the type of breast cancer a patient has, doctors search for the presence or absence of receptors and proteins that exist inside or on the surface of a cell. You may have heard of the estrogen receptor (ER), progesterone receptor (PR), and human epidermal

growth factor receptor 2 (HER2). In ER-positive breast cancer, PR-positive breast cancer, and HER2-positive breast cancer, treatment includes medicines that prevent, slow, or stop cancer growth by targeting those receptors. But triple-negative breast cancers (TNBCs) need different types of treatments because they are ER-negative, PR-negative, and HER2-negative.

Each year, to raise awareness of and funds exclusively for TNBC, the Triple Negative Breast Cancer Foundation promotes Triple Negative Breast Cancer Day on March 3. In recognition of TNBC Day, we present 3 common myths about this disease.

To learn more, you can visit tnbcfoundation.org.

Myth #1: People with TNBC Can Have the Same Treatments as All Other People with Breast Cancer

Many people do not understand that there are different kinds of breast cancer. Even some people who have had breast cancer do not understand the differences between TNBCs and breast cancers that are hormone receptor–positive or HER2-positive. People you meet may have been taking a hormonal treatment pill for 5 to 10 years to lower their risk of recurrence (a return of the cancer), or they may know someone who has. These people may not understand that this option does not exist for you. Having to explain the differences between TNBCs and other breast cancers can be frustrating, especially if you are just learning about this diagnosis yourself. On the other hand, you may take some of the same chemotherapy medicines as people with other types of breast cancer.

Myth #2: Only African Americans Get TNBCTNBCs affect people of all races. Breast cancers in African American women are more likely to be triple-

negative than those in white women.

Myth #3: TNBCs Are Always Difficult to TreatYour doctor may tell you TNBC is more difficult to treat than other types of breast cancer. Although

many triple-negative cancers are aggressive, your doctor’s prediction of how well your treatment will work depends on the tumor size and whether the cancer has traveled to the lymph nodes (tissues near the breast) just as much as it does on its triple-negative status. There are some very effective treatments for TNBC. Your doctor will work with you to find the treatment that is right for you.


Ricki Fairley was told she had 2 years to live. That was 8 years ago. And now that doctor calls Ricki

her miracle.Ricki allowed herself to have one, and only one,

“pity party,” as she calls it, the day the doctor put an expiration date on her life. She briefly described this low point to me, choosing instead to focus on the joys in her life and her newfound purpose. Within minutes of beginning our conversation, it became apparent that Ricki is a woman of great determina-tion and great faith. Her energy is contagious and her joy, abundant. When she remembers the day of her pity party, she says, “Somehow I knew that God had me. My friends and I prayed together every day. But I didn’t pray for healing. I prayed for God’s will to be done. I didn’t know if I was supposed to die then or not, but I had faith that God knew what I was up against. I had to put my child through college. Somehow, I had faith it was going to be okay.”

At the time of her diagnosis, she was a partner in a marketing agency. She and her husband lived in a

special report

Triple-Negative Breast Cancer: One Woman’s ExperienceFrom Breast Cancer Survivor to Champion for Other African American SurvivorsBy KRISTIN SIYAHIAN

Ricki Fairley is a marketing strategist with over 30 years of experience. She is the Vice President of Strategic Partnerships & National Programs for the Sisters Network Inc. She serves on the boards of the Triple Negative Breast Cancer Foundation and the Center for Healthcare Innovation. She is an ambassador and advisor for the Live Humanly Campaign for Immunomedics to help drive FDA approval of a new therapy that will transform the landscape for metastatic triple-negative breast cancer. She serves on the Genentech Oncology Advocacy CEO Roundtable. She serves on the National Accreditation Program for Breast Centers Advocacy and Outreach Committee, and the CDC Advisory Committee on Breast Cancer in Young Women.

Ricki holds a bachelor’s degree from Dartmouth College and a master’s degree from Kellogg School of Management at Northwestern University. She is the President Emeritus of the Black Alumni of Dartmouth Association and is Board Chair Emeritus of Kenny Leon’s True Colors Theatre Company. She is also a member of the 2011 Class of Leadership Atlanta.

As a stage IIIA triple-negative breast cancer survivor/thriver, Ricki’s personal purpose, passion, mission, ministry, and blessing is to raise awareness, fundraise for a cure for breast cancer, and support and coach what she calls her “Breastie” sisters through their breast cancer experience.

You can connect with Ricki on Twitter and Instagram at @RickiDove.


large 5-bedroom, 6-bathroom home on 2 acres in the suburbs of Atlanta. Their daughters were aged 26 and 19 years. The elder daughter worked in the Obama White House, and the younger was in her sophomore year at Dartmouth College. Ricki was the breadwinner for her family and, as she told me, the “rainmaker” for her com-pany. All was going along beautifully. But Ricki hadn’t realized her life’s purpose quite yet. It took a breast cancer diagnosis for her next assign-ment to be revealed.

THE DIAGNOSISDuring an annual exam, her

doctor found a peanut-sized lump under her left nipple. Ricki’s career kept her so busy during this time of her life that the lump amounted to an annoyance that she didn’t want to address. She was con-

vinced the biopsy would result in a false alarm—she simply could not accommodate a breast cancer diagnosis. Ricki remembers, “The day I had my biop-sy, I was driving to the appointment while conduct-ing a call with a client. I arrived at the doctor’s office, phone still glued to my ear, to find my daughter, the doctor, and the nurse standing together, waiting for me. My daughter grabbed my phone out of my hand and clicked it off. I said, ‘Are you crazy?! You hung up on my client!’”

After the biopsy, Ricki headed to the airport for a business trip. As she was going through security, her doctor called. “Ricki, you have breast cancer. I think you should come home.”

Refusing to slow down, Ricki replied, “I really can’t. I have to give a speech tomorrow. I have 6 things planned over the next 2 weeks, speaking engage-ments, and client meetings. I have to go. I’ll call you when I get back.”

Three days later, her doctor called again. “Ricki, we have the pathology report. Not only do you have breast cancer, but you have triple-negative breast cancer. You need to come home.”

“What does that mean? ‘Triple negative’ sounds pretty good.”

“No, no, no. You need to come home.”

PEACE IS NON-NEGOTIABLELike many patients, Ricki immediately turned

to Google; and the notoriously frightening “Dr. Google” said, “Triple negative is the worst breast cancer you can have. It has the highest mortality rate. There are no drugs that work for it. You should prepare for the worst.”

And those were the thoughts running through Ricki’s head when she met with her nurse navigator. Ricki had an epiphany of sorts at that meeting. Her navigator spoke to her about the importance of

special report

Ricki paddleboarding (above) and with her grandbabies (left)

I SOLD MY BIG HOUSE AND MOVED TO A LITTLE 1-BEDROOM CONDO ON THE

CHESAPEAKE BAY.

SHE WAS CONVINCED THE BIOPSY WOULD RESULT IN A FALSE ALARM—SHE SIMPLY COULD NOT

ACCOMMODATE A BREAST CANCER DIAGNOSIS.


reducing her stressors as a means of improving her quality of life. Forced to slow the pace of her life and remove stress, Ricki realized that not only did she have to get the cancer out of her body, but she had to remove all the cancers from her life and increase her peace. She began with the former and chose to have a double mastectomy followed by 6 rounds of chemotherapy and 10 weeks of radiation. But 1 year later, the cancer returned. Her doctor told her, “You’re metastatic. You have about 2 years. You need to get your affairs in order.”

“I don’t have time for this! I have to put my kid through college. You don’t understand. I have to work. You and God and I have to work something out.”

Ricki completed 4 more rounds of chemotherapy

and, miraculously, the cancer be-came undetectable.

During this second round of treat-ment, she went to work removing other cancers from her life. She says, “I divorced my husband of 30 years. I quit my business partner and started my own company between my third and fourth rounds of chemo. I sold my big house in the suburbs and moved to a little 1-bedroom condo on the

Chesapeake Bay near my hometown. I totally changed everything about my life. I knew that I had to choose life and find peace. I had to learn that my peace is non-negotiable.”

FINDING PURPOSERicki talks about her purpose in life and believes

her first assignment was to support her daughter through college. Check, mission accomplished. At the graduation ceremony, Ricki wondered what her next assignment would be. Then it came to her, with absolute clarity, she thought, “I have to help other women. That’s why I am here. I have to talk about breast health.”

With the same vigor and strong spirit that Ricki approaches every aspect of her life, she turned her attention to helping others diagnosed with triple-neg-ative breast cancer. She became involved in the Triple Negative Breast Cancer Foundation and was asked to join its board. She became involved in the Sisters Network, a national African American breast cancer survivorship organization, and is now its Vice President, Strategic Partnerships & National Programs. She has worked with several pharmaceutical com-panies as an advisor and speaker. But primarily, she is a patient advocate. Not a day goes by that some-one doesn’t contact her looking for advice, guid-ance, and reassurance.

What Advice Do You Have for Young African American Women About Breast Health?I tell everybody I see—men and women—check the breasts that you love. I know you have a pair! You have to know your body, know your normal, know your history, know what you’re up against. So check your breasts. Early detection is our only protection!

special report

Look at your life and get rid of all the cancers. Figure out what’s going to give you peace. As you go through this experience, there are going to be some really hard days, there are going to be some good days, but whatever you’re doing, you’ve got to find peace. Anxiety doesn’t help you, so turn your fear into faith and find peace. Your peace is non-negotiable. And get the best care you can and fight like a girl.

How Would You Advise a Woman Who Has Just Recently Been Diagnosed with Breast Cancer?

PRIMARILY, RICKI IS A PATIENT ADVOCATE. NOT A DAY GOES BY THAT SOMEONE DOESN’T CONTACT HER LOOKING FOR

ADVICE, GUIDANCE, AND REASSURANCE.


special reportAs an African American woman, Ricki is especially

interested in helping others in her community. “Every woman fighting breast cancer is suffering, black or white; it’s not good for anybody. But we have a dif-ferent battle to fight because of social determinants of health.

“The challenges of a black woman with breast cancer are different because she doesn’t have the quality of care, she doesn’t necessarily trust the sys-tem, and she may be more likely to be a single mom. One of the statistics that people find astounding is

that 77% of African American mothers are single. Now add breast cancer to that equation. How is that mother going to prioritize her life? What is she going to do? Go to work and feed her kid or get a mam-mogram and go to chemo? Her circumstance really dictates her choices.”

Ricki strongly encourages black women to con-nect with each other. She recalls attending a breast cancer support group where she was the only black woman in the room and the only woman with tri-ple-negative breast cancer. “The other women hadn’t even heard of triple negative, so we could not relate to each other at all. They were complain-ing about weight gain from taking the drug tamoxi-fen, while I had lost 30 pounds in a month. We fight a different fight. It’s a different cancer.

“Being around African American women is so important to me. That’s why the Sisters Network exists. We’re here to give you information to help you, but

really to give you a hug and say ‘We get it.’ We understand that you have 3 kids at home and you have to work. We understand that you’re challenged financially. We understand that you may not have health insurance. We understand that you’ve got to pay the light bill today.”

Not only does Ricki advocate for breast cancer survivors, she encourages families to share their health histories before a cancer diagnosis. Many times, out of fear, families do not talk about their breast cancer risk. She says, “We don’t talk about it at home until somebody gets sick. When somebody gets cancer then it all comes out. ‘Oh, Grandma Edith had that. Aunt Louise had that.’ We know about it, but we don’t talk about it or our risk. It’s real-ly important to put all that on the table.

“Everything in a black family happens at the kitch-en table, everything. The food, the counseling, the talking, it’s all at the kitchen table. So sit at the table and talk about this stuff. You don’t have to die of breast cancer. We can’t prevent it, but if you detect it early, we can cure it.”

Talking with Ricki is an absolute joy. She truly is a beacon of hope. I am grateful for her willingness to share her story with me so that I can share it with you. I am hopeful that her story will help many others bat-tling triple-negative breast cancer.

“BEING AROUND AFRICAN AMERICAN WOMEN IS SO

IMPORTANT TO ME. THAT’S WHY THE SISTERS

NETWORK EXISTS.” —RICKI FAIRLEY

WITH THE SAME VIGOR AND STRONG SPIRIT THAT RICKI

APPROACHES EVERY ASPECT OF HER LIFE, SHE TURNED HER

ATTENTION TO HELPING OTHERS.


survivorship

By CAROLYN BYRD, RN-BSN, CBCN

Difficult Conversations: What to Expect When You Share the News of Your Diagnosis

You just found out that you have cancer. You’re trying to wrap your brain around the devastating news you have just received.

Your entire life seemingly flashes before your eyes. Thoughts of your family and friends’ reactions to the news begin to crowd your brain. Your emotions are all over the place, and you haven’t had time to process the news. This is a normal response. Allow yourself time and space before sharing the news. Only you know when it’s time to share. It is impor-tant to know the facts before you share with extended family and friends. You may get a lot of questions that you are unable to answer, causing more emotional turmoil. If you are unable to deliver the news, you can appoint someone to speak on your behalf. After sharing your diagnosis, you should

expect many different emotions from others. People cope with bad news in different ways.

If your spouse or significant other wasn’t present when you received your diagnosis, you may need to inform them right away. More than likely they will be your greatest support throughout your can-cer journey. They can assist you in making deci-sions about your care. If at all possible, keep them in the loop of what is going on because they are concerned about your health and well-being. Remember that this diagnosis will affect your person-al relationship with your spouse or significant other, so don’t shut them out. Normally they are there to assist you in making decisions about your care.

Telling younger children may be a little challeng-ing. It is important to take the child’s age into con-

Sarah Cannon


survivorshipsideration when having this conversation. As par-ents, it is natural for us to protect our children. Children are very smart and can sense when some-thing is wrong. Be truthful with them and assure them that you will be getting the care that you need. Hopefully this will alleviate some of their fears and worry. Allow them time to process this informa-tion and ask questions. They may not know how to deal with your diagnosis. Look for little clues that they are having difficulty coping. This may include a decline in their schoolwork, decreased interest in other activities, or just wanting to be with you all the time. Children respond in many different ways when they are concerned about the well-being of their parent.

Teenage children and young adults have proba-bly had friends who had to deal with a cancer diagnosis. They may have more knowledge because of news feeds and other social media outlets that discuss cancer. This knowledge may

cause them to ask more appropriate questions that you may not have the answers to. Again, be honest and up front with them. They may not know how to appropriately express their emotions; therefore, keep that line of communication open. Teens and young adults have their own set of challenges that they deal with on a daily basis. They may need to be pointed in the direction of some appropriate resources to help them cope, which may include support groups or professional counseling.

When informing your family and friends about your cancer diagnosis, be sure that you are ready

to have that conversation. Remember there is no rush. Make sure it’s on your timetable; no one else’s. Try not to be disappointed if you do not get the response that you expected or hoped for. Some may have a lot to say about your diagnosis, and others may not know what to say. Recognize that everyone receives and processes this news in differ-ent ways. It is important to embrace your circle of family and friends who are on the journey with you. You may find that many people will volunteer to help with cooking, cleaning, childcare, running errands, or whatever else you need assistance with. This is the time to accept help if you need it, because there may be days that you may not feel well enough to perform some of these responsibili-ties. Don’t be embarrassed to ask for help.

Notifying coworkers can sometimes be more daunting. You can decide to share only with your immediate supervisor, or you might decide to share your diagnosis with your coworkers. If you decide to inform your coworkers, you may want to consult with your supervisor regarding the best form of com-munication—e-mail, group meeting, or an appoint-ed individual to deliver the news. It is important to keep your supervisor informed if you are unable to carry out your work duties. You may want to reach out to your human resources department to learn about possible resources available to you.

Remember, there is no right or wrong way to share this news with others. You have total control on how and when these conversations take place. Remember that the best decision you make is your own.

YOU HAVE TOTAL CONTROL ON HOW AND WHEN THESE

CONVERSATIONS TAKE PLACE. REMEMBER THAT THE BEST DECISION YOU MAKE

IS YOUR OWN.

CHILDREN RESPOND IN MANY DIFFERENT

WAYS WHEN THEY ARE CONCERNED ABOUT THE

WELL-BEING OF THEIR PARENT.


treatment

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 naviga-tor 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 naviga-tor is your advocate. I’d like to take a look at each of these roles and discuss why each is important to your care.

PATIENT EDUCATORNavigators are educators. You will receive a

lot of information regarding your diagnosis, the var-ious 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 treat-ment decision-making.

You will have the opportunity to share your pref-erences in obtaining information. Whether you learn best through pictures and graphics or written materials, it’s important that you discuss your pref-

By LILLIE D. SHOCKNEY, RN, BS, MAS, HON-ONN-CG

The Role of Your Breast Cancer Nurse Navigator


treatmenterences so your navigator can provide education-al 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 pre-scriptions from the pharmacy, preparing appropri-ate 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.

EMOTIONAL SUPPORTAlthough 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 perspec-tive, and teach you coping skills. Make a point of telling your nurse navigator what concerns you.

Before you meet with any member of your treat-ment 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 sup-port you deserve.

COORDINATION OF CAREIt 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 anes-thesiologist 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 naviga-

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.


treatment

tor is instrumental in coordinating, organizing, up-dating, and communicating that care path.

RESOLVING BARRIERS TO CAREThere 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 bar-riers are transportation and financial consider-ations. 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.

PATIENT ADVOCATEYour 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 nav-igator could orchestrate her lumpectomy surgery on a Friday in the hope that she is well enough to return to work on Monday. Radiation could hap-pen 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.

THERE MAY BE CULTURAL BARRIERS THAT IMPACT THE CHOICES A PATIENT MAY MAKE ABOUT RECEIVING

(OR NOT RECEIVING) CERTAIN TREATMENTS.

YOUR NURSE NAVIGATOR IS TRULY YOUR ADVOCATE.

HE OR SHE IS THE PERSON YOU WILL LIKELY BE IN CONTACT

WITH MOST FREQUENTLY.


palliative care

The Truth About Palliative CareBy LILLIE D. SHOCKNEY, RN, BS, MAS, HON-ONN-CG

I write to you today to begin an important conver-sation. A conversation just between you and me about palliative care. When someone hears their

doctor or nurse mention the words “palliative care,” many times their immediate reaction is, “I don’t want that yet.” However, when palliative care is suggested, there is a high probability that a referral to a palliative care expert would improve the patient’s quality of life. I’d like to discuss pallia-tive care with you; what it is, what it isn’t, and why it is valuable to breast cancer patients.

Palliative care is a relatively new medical spe-cialty. It’s important to know that palliative care is not the same as hospice. Palliative care focuses on improving or maintaining the quality of life of a patient and providing comfort to people of all ages with serious, chronic, or life-threatening illnesses. The multidisciplinary palliative care team works to either maintain, improve, or restore a patient’s quality of life.

Quality of life should always be a priority in can-cer care. When someone has lost their quality of life, living can become more of a chore than a pleasure. Whether it be chronic pain, neuropathies, headaches, inability to care for yourself due to physical disabilities, another treatment side effect, or a disease symptom that has impaired your joy for living, palliative care should be initiated to identify the cause of that impairment and restore your joy.

Let me tell you a story about a patient I knew well who benefited from palliative care. Although the example is not a breast cancer patient, it remains one of the best stories I can share with you because of the profound impact palliative care had on this patient and his family. The patient had advanced prostate cancer. He was a farmer with a strong work ethic raised to believe that a produc-tive life is the only life worth living.

One day while farming, he coughed rather vio-lently, which resulted in severe back pain. His pain was so severe that he couldn’t walk or get out of bed. His medical oncologist placed him on opioids, which helped his pain but caused him to remain in bed, sleeping most of the time. Because of his per-sonal philosophy regarding the importance of productivity, he was angry, distressed, and simply didn’t want to live anymore if he were forced to remain in bed. When I learned of this situation, I rec-ommended a palliative care consultation, and I asked him if he was familiar with the concept of

palliative care. He responded, “Oh yeah. I know what that is. That’s when they have given up on helping you, so they put you in a room by yourself that has a hospital bed in it, and they put you in that bed and put the side rails up so you can’t get out. There is an IV hooked up to you with morphine, so you sleep all the time. And someone comes in every day to see if you have died. That’s palliative care.”

Nothing could have been further from the truth. I made a mental note to avoid the term “palliative care” when talking with him. Instead, I said, “I am going to schedule an appointment for you with Tom, our Johns Hopkins Quality of Life Coach. He special-

PALLIATIVE CARE IS A RELATIVELY NEW

MEDICAL SPECIALTY. IT’S IMPORTANT TO KNOW THAT PALLIATIVE CARE IS

NOT THE SAME AS HOSPICE.


palliative careizes in both restoring a patient’s quality of life and preserving their quality of life. Yours needs restoring.”

The patient said, “That’s what I need. I need my quality of life back.”

I contacted Tom, our Director of Palliative Care, and explained the patient’s situation, his percep-tion of palliative care, and details of his life—includ-ing his love of farming.

At their first meeting, Tom asked the patient to share 3 things that brought him joy before the debil-itating back pain.

The patient said, “I have no joy at all right now. But before this severe pain my joys were these 3 things—I provide loans to young men who want to become farmers. There are 2 young men waiting to meet with me, and right now I can’t because I can’t think straight taking these pain pills.

“My second joy is visiting with my granddaughter and her children, my great-grandchildren. They came to see me earlier this week, 6 hours round trip of driv-ing, and I missed the whole visit, sleeping in bed.

“My third joy, which is the most important to me, is farming. I want to get back out on my combine and pick my field corn and soybeans. I want to feel productive again.”

Tom said, “Those 3 joys are our 3 goals for your quality-of-life team.”

Tom went on to explain the results of a recent x-ray. The patient had a fracture of a vertebra in his back; the fracture was the culprit of the pain. Tom arranged for a procedure to repair the ver-tebra in the hope of relieving the patient’s pain

and allowing him to become active once again. Tom and the patient agreed to a partnership

that day in which they would always be honest with each other. Tom asked how long the patient would need to be in the fields to still feel like a farmer. The answer was 30 minutes a day. Tom assured the patient that he would likely be back out harvesting crops in 2 to 3 weeks. With this news, there was true joy in that room. Hope was running deep.

Ten days after the procedure, Tom received a call from the patient, “Guess where I am right now?”

Tom said, “I hear the engine running, and by your happy voice I assume you are out on the combine. What are you picking right now?”

“Field corn. And I am keeping my promise to you. I am only out here for 30 minutes.”

“That’s great. Tell me about your other 2 joys.”“This morning I met with the 2 young men I told

you about and gave them a farm loan. I think they will make good farmers. And my granddaughter and 2 great-grandchildren are coming to visit. Thank you, Tom, for giving me my life again. Life is good.”

Now, why did I give you this patient as an exam-ple? Because this patient was my father. Without a palliative care intervention, I cannot imagine what would have become of my dad. With palliative care, he got his pain in control without opioids, had his joys restored, and was able to enjoy life on his own terms, based on how he defined his own qual-ity of life.

Yes, in most cases, palliative care is provided to patients with advanced cancer of some type; however, it should also be offered to patients who are receiving treatment with curative intent but are experiencing debilitating side effects from that treatment.

If you are experiencing side effects from treat-ments, and your oncologists are having difficulty managing them effectively, request a consultation with palliative care. Your nurse navigator can help to make this referral.

Remember, palliative care isn’t “end-of-life care” by any means. It may be an addition to your care that allows you to continue enjoying your life and maintain your quality of life as you define it.

QUALITY OF LIFE SHOULD ALWAYS BE A PRIORITY. WHEN

SOMEONE HAS LOST THEIR QUALITY OF LIFE, LIVING CAN BECOME MORE OF A CHORE

THAN A PLEASURE.


empowerment

Patient Empowerment and Shared Decision-Making Participating Confidently in Your CareBy JORDAN HENDERSON, BSN, RN, OCN, ONN-CG; BRANDY MEIERHOFER, BSN, RN

Imagine your boss at work tell-ing you to change a daily routine, but with no explana-

tion as to why the change should take place. You would likely wonder why the change was necessary, or what was wrong with the usual routine. Perhaps you would even think of your own ideas that might be better than the one your boss dictated. Now, imagine your boss taking the time to meet with you and explaining the reason for the change, why the usual routine wasn’t working, how the new solution will bene-fit you, and asking for your per-spective and input. Would you be more likely to incorporate the change successfully and stick to it? This is the same effect of patient empowerment and shared decision-making in healthcare.

Research by Jørgensen and colleagues1 defines patient empowerment as “the process by which patients develop knowledge, skills, and motivation to take control of their own situation, and the state in which they have a sense of being in control, of having mastery.” Patient empowerment can help lead to shared decision-making with physicians. Niranjan and colleagues2 report that the Institute of Medicine is “calling for patients to be the locus of control for medical decisions.”

The more knowledge patients have about their disease and what to expect, the better equipped they are to help make decisions that best fit their individual needs. With cancer care becoming more personalized, including the patient in their care and

increasing their engagement overall is needed more than ever. By making decisions jointly with their cancer team, patients can feel more peace of mind throughout their cancer journey. “Empowered patients make health decisions that better reflect personal preferences, often experiencing more favorable health outcomes such as decreased anx-iety, quicker recovery, and increased compliance with treatment regimens.3

Patients who actively participate in their treat-ment plan feel a sense of trust with their team and are more informed about their disease and what to expect. Understanding why a certain treatment is more effective, or the importance of the treatment itself, can put the patient at ease and increase treatment compliance. Being well informed about treatment options and prognosis is key to a sense of empowerment.1 Looking at the disease and the treatment plan from all angles allows the patient to


empowermentprocess the information and equips them with the knowledge to ask better questions. Learning about a disease and all the medical terms that go with it can be overwhelming for most. Including the patient in the conversation can help decrease anxiety and increase understanding.

There are benefits for patients who take an informed and active role in their healthcare. Many studies suggest that patients experience more depression and mood disturbance when they have little contribution to their plan of care.4 Conversely, patients who take an active role in their care tend to adhere to the treatment plan and are, overall, more satisfied with their outcome.1

Patients should select a physician who communi-cates clearly what to expect from their healthcare and who allows them to actively participate in their care to the extent that they choose. It is important to keep in mind that each patient should participate in shared decision-making to the degree that brings them comfort and confidence.4 Healthcare profes-sionals should take the time to provide the informa-tion needed to make an informed decision and should respect and support the patient’s decision.

EXAMPLES OF SHARED DECISION-MAKING• A patient deciding to have a bilateral mastecto-

my due to positive genetic testing results and the physician supporting that decision allows the patient to have peace of mind

• A patient choosing an accredited radiation facil-ity near their home for easier access, while still adhering to the physician’s clinical recommenda-tion of an accredited facility

• A patient decides against recommended che-motherapy due to fear of side effects and decreased quality of life despite a decreasing survival rate. The care team respects the decision and provides support and management of pain and side effects.

TIPS FOR PATIENTS• Increase Your Knowledge: Gather as much infor-

mation about your disease as you can from repu-

table and accurate resources so you are able to make an informed decision. Ask questions of your healthcare team to learn more about treatment options and what to expect

• Bring Support: Surround yourself with people who will support and care for you during your journey. Inform them of your desires before starting treat-ment so they are able to support you through your decisions

• Choose the Right Physician for You: Select a doc-tor who provides options, listens to your concerns, individualizes care to your needs and values, and who encourages your involvement in decision- making

• Determine Your Desires: Decide what you want out of your treatment plan. List what is important to you and express it openly to your care team. Discussing your values and what means the most to you can help your doctor better tailor your treatment plan to fit your needs. For example, if you want to continue working while undergo-ing chemotherapy, your physician can sched-ule treatments so that the worst side effects occur over your days off rather than during your workdays.Cancer care is not a one-size-fits-all approach. A

personalized treatment plan cannot be successful without patient engagement and shared deci-sion-making. Arming patients with the tools they need, such as examining values, desires, and prefer-ences, can help in making the right decision. Clear communication, a trusting rapport with the medical team, and teaching patients to become their own advocate can positively impact patient satisfaction and lead to improved outcomes.

References1. Jørgensen CR, Thomsen TG, Ross L, et al. What facilitates “patient empowerment” in cancer patients during follow-up: a qualitative system-atic review of the literature. Qual Health Res. 2017;28:292-304.2. Niranjan SJ, Wallace A, Williams BR, et al. Trust but verify: exploring the role of treatment-related information and patient-physician trust in shared decision making among patients with metastatic breast cancer [pub-lished online May 6, 2019]. J Cancer Educ.3. Agency for Healthcare Research and Quality. Strategy 6I: Shared Decisionmaking. www.ahrq.gov/cahps/quality-improvement/improvement- guide/6-strategies-for-improving/communication/strategy6i-shared-decision making.html. Reviewed October 2017.4. Colley A, Halpern J, Paul S, et al. Factors associated with oncology patients’ involvement in shared decision making during chemotherapy. Psychooncology. 2017;26:1972-1979.

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