This interview has been conducted in partnership with the National Breast Cancer Foundation (NBCF). Recognized as one of the leading breast cancer organizations in the world, NBCF is Helping Women Now® by providing early detection, education, and support services to those affected by breast cancer. A recipient of Charity Navigator's highest 4-star rating for 14 years, NBCF provides support through their National Mammography Program, Patient Navigation, breast health education, and patient support programs. For more information, please visit https://www.nationalbreastcancer.org/

Keira Smith: Welcome to Oncology Data Advisor. In this interview, Lillie Shockney, Professor of Surgery at Johns Hopkins University, will be discussing quality of life for people living with breast cancer. Thank you for joining us.

Lillie Shockney, RN, BS, MAS, HON-ONN-CG: Thanks for having me.

Keira Smith: So what is the prognosis of stage IV breast cancer?

Lillie Shockney: Stage IV breast cancer, also known as metastatic breast cancer, means that the breast cancer has gone beyond the breast, the lymph nodes, and the bloodstream, and it has set up tumors in other organs within that woman's body. For invasive ductal carcinoma, commonly, that is the bone, liver, lung, and sometimes the brain. For invasive lobular, it'll go to the bone and sometimes to the liver, or the lung, but it will also go to the stomach lining, intestines, uterus, and ovaries. It has different pathways to take it to different places.

When I look back 50 years ago, it would be rare to remember a woman living more than one to two years after being diagnosed with stage IV breast cancer. Today, however, with the improvements in science and drug therapies and better understanding of the biology of the tumors—which is where that wonderful breast pathologist comes in, to be able to explain those things to us so we can develop better treatments. For women that have estrogen receptor (ER)–positive and human epidermal growth factor receptor 2 (HER2)–negative breast cancer, we're able to give them relatively new drugs, such as CDK4/6 inhibitors, along with hormonal therapies. These women are literally living for a decade. I know several that have been living for more than two decades. They are living in harmony with this disease, and we're able to treat it as a chronic illness, like we would treat diabetes or heart disease or chronic obstructive pulmonary disorder (COPD).

For those women that have triple-negative breast cancer, it's ER-negative (not stimulated to grow by estrogen), progesterone-negative (not stimulated to grow by progesterone hormones either), and HER2-negative as well, and we have fewer drugs to offer. We're defaulting to needing to give chemotherapy, so she loses the opportunity to receive drugs that are focused specifically on ER-positive, HER2-negative disease. These women are living one to three years, sometimes as far out as five years, but their cancers are usually more aggressive.

One thing to recognize is that metastatic breast cancers are not all the same. Where they go is not all the same, but it is where they go that then becomes the cause of death. If we could prevent breast cancer from ever leaving the breast, no one would ever die. It's when you get it in your liver or your lungs that those organs can't function correctly anymore. You will end up with an infection, and the infection will be the cause of death. I'm pleased to say that today, more and more research is being done in the metastatic breast cancer space than has ever been done before. For decades, individuals with stage IV breast cancer have felt they've been forgotten and that pharmaceutical companies have only been focusing on new treatments for early-stage breast cancer patients. There is a ton of money that has been devoted to metastatic breast cancer, with the goal of not having anyone die, which means preventing the disease from spreading further and reversing it where it is.

I have a very dear friend who developed metastatic breast cancer 19 years after her original early diagnosis. That is very unusual to see it take 19 years before it declares itself in the lungs and her bones, but it did. She now is almost 10 years living in harmony with this disease, on CDK4/6 inhibitors and hormonal therapy. For the last three years, her scans have shown no evidence of disease (NED). Now we know there's got to be microscopic disease there somewhere, which is why we still have her on therapy. We don't consider her cured, but we can't see any active disease, so she has NED. I tell her, "Are you still living with NED? Are you sleeping with NED? Are you enjoying NED? Please tell me yes. Is NED your best friend? Because he's got to be." And she'll say, "Yes, my scans showed that NED and I are still living together." That's fabulous. I mean, how fabulous can that be?

It also means that these individuals that are living years out with their disease also usually look normal. Someone could walk up to them and say, "I heard you had stage IV breast cancer, but that must have been a lie because you look fine." She says, "Well, no, actually I do have stage IV breast cancer." "Well, you don't look like it." People don't believe that they have stage IV breast cancer unless they are really sick-looking. That's a crime. They live in a world of isolation, and they're very frustrated about that. We need to do something about that. We need to teach people what a breast cancer patient with stage IV disease looks like today. They aren't all in a wheelchair and bent over. She might be playing tennis later today.

Keira Smith: What are the types of palliative care for these patients?

Lillie Shockney: Let me first say that palliative care gets a bad reputation because it is assumed that palliative care is part of hospice care, and only part of hospice care, which it is not. Palliative care is intended to stand alone as well as be part of hospice care at end of life. Because there is confusion about what palliative care is, I don't call it palliative care. I prefer to call it what it is. It is quality of life preservation or quality of life restoration. That's what a palliative care doctor specializes in: restoring patients' quality of life or preventing them from losing their quality of life. They do it their very best without using opioids for pain relief.

Medical oncologists are taught to use opioids for pain relief. Palliative care doctors say, "I'm going to give her a nerve block. I'm going to do a vertebroplasty. You're nauseated? Rather than telling you to only eat soft food, I'm going to give you a pill that will stimulate your appetite, that we use for anorexia nervosa." It works very well for advanced cancer patients in keeping their appetite stimulated and not having nausea. They think outside of the box—and I always say, they think outside of the bra, for our breast cancer patient—and say, "Let's talk about what your symptoms and the side effects of your treatment are and what we can do together to minimize them or even make them go away." I am in awe of what these specialists are able to do. They usually aren't called in though until much later, when we're in a discussion about hospice, when a palliative care specialist should have been added to the patient's team as soon as they were diagnosed with stage IV disease.

Even if they don't have any aches or pains, that patient should be meeting with a quality of life coach who is on her multidisciplinary team and involved with taking care of her whenever she needs them. That's what should be happening. Our palliative care specialists at Johns Hopkins—who I do refer to as our quality-of-life coaches, because that's what they are—have trained all of us to ask specific questions when we meet a patient with stage IV disease at that very first consultation. These questions are on the back of our ID badges, though I hope and pray no one has to look at their badges anymore because we've been using this now for 14 years. The first question is, "How much do you know about your breast cancer?" The patient might say, "Oh, I know everything." "Well, just tell me what you know." That's where we find out that what they thought they knew is incorrect. A patient may say, "Well, I know I have breast cancer and bone cancer and lung cancer and liver cancer." We say, "No, you only have breast cancer, but the breast cancer cells have spread to those other organs. You don't have primary lung cancer, primary liver cancer, primary bone cancer." Sadly, she and her family will already have been on the internet, looking up the treatment for lung cancer or bone cancer, which is all a waste of time.

We have to make sure she has accurate information about the kind of disease she has. Then the second question is, "How much do you want to know about your breast cancer?" Not every patient wants to know everything. Sometimes they want what I call just-in-time information: "I can only deal right now with you telling me where my cancer is and the first drugs you're going to use to help shrink it. I can't deal with hearing about radiation or anything else. Just tell me that part for now." That's what I call just-in-time information. Then the next questions we ask at that first visit and every sequential visit are "What are you hoping for right now? What are you most worried about right now? And tell me three things that bring you joy or brought you joy before you became sicker."

Those joys are part of how she defines her quality of life. "I love playing with my two-year-old grandson." "I love birdwatching." "I love hearing my church choir sing." We need to preserve those things for her, and we can, but we can only do it if we know about them. How can we keep a bubble around those things? She may have a daughter getting married in three weeks; we need to know that. Her nurse navigator's digging in with her on that: "Tell me what milestones are coming up in the next few months. Do you have a wedding anniversary, a 50th birthday?" If she says, "Well, my daughter's getting married in three weeks," then we're going to begin her treatments after the wedding."

"No, no, no. I want to start treatment right away. I've got disease in these other organs." We say, "No, you have a wedding coming up and it's not going to change your outcome by waiting four weeks. It will not change it. If we waited 10 weeks, that'd be different, but not four weeks. We know that from clinical research. We want you to enjoy your daughter's wedding. We don't want you without your hair on your head. We don't want you looking sick. We don't want you trying to get yourself into the bathroom to throw up. That's not the memory you want to have of your daughter's wedding. That's not the memory your daughter wants to have of you at her wedding." We need to preserve those milestones, and the only way we can do it is by knowing them and making sure the multidisciplinary team factors it into their treatment planning. If they don't, shame on us, because we should have asked our patient these things, even if the patient says, "Those don't matter anymore." They mattered before she knew she had breast cancer, so they still matter. They're still just as important to her and probably also to her family, so we need to work to hold onto those.

We also know that over time, what her joys are will change. What she's hoping for will change, and what she's most worried about will change. We need to have very candid, thoughtful conversations with her each time we ask these questions so we can help her with these things. I believe that we need to help a patient through phases of hope. The first phase is hoping for a miracle. We can all hop on that wagon for about a month to six weeks. Next we're going to hope for normal longevity, living in harmony with this disease, and dying of something other than breast cancer. Then, after she's been on therapies for some time—maybe she's on fifth-line, sixth-line, or seventh-line therapy, where the treatments are working for a much shorter period of time or not working at all, and they're making her sicker each time we give her a new treatment—now we've got to have a sit-down conversation and say, "You're not going to have the longevity we had hoped for. You're going to have a shorter longevity, but we want to preserve your quality of life during this shorter length of time that you're going to have. Your life goals that are beyond where we think you will survive: we're going to help you fulfill them in alternative ways."

I'm going to go back to a wedding. Right now, a patient may have a 10-year-old daughter, and the way things are looking, it looks her mother is probably only going to survive another year at best. I'm going to provide her with greeting cards that I get donated, for every milestone that a child and young adult reaches. I give her cards for birthdays, for bar mitzvahs, bat mitzvahs, first communion, confirmation, getting their driver's license, when they graduate from high school, when they graduate from college, when they get their first job that's tied to their career aspirations, when they get married, when they have their first baby. What do you want to tell your child on that day? She writes in these—these aren't texts, or emails, or typing a note. This is her handwriting, with her blue pen, that her child's going to see. She's going to write in it her motherly advice and what she hopes for her in her marriage.

She's also going to let her know that she is with her in spirit that day, and other smart things to tell her. I had a young woman contact me, who I'd never met, who told me, "I only knew your first name. I've never met you. You took care of my mother 14 years ago, when I was 10. That's when my mother died, when I was 10. My mother was in and out of the hospital a lot during the last six months of her life. Each time my dad would bring her home, my Aunt Sarah, my mother's sister, would come over to help my dad take care of her. I would listen to my mother telling my Aunt Sarah, 'Lillie said to do this, and Lillie said to do that,' but I didn't know who Lillie was or what you were telling my mom, until my mother passed away and my Aunt Sarah became the keeper of my cards.

"For every milestone in my life, there's been a card from my mother, and I have kept every single card and I've done whatever she told me to do, in every single card. Three weeks ago, I got married, and as my Aunt Sarah helped me with my veil, she handed me a card from my mother. The edging of the envelope had yellowed because after all, it was 14 years old. I opened it up and removed the card. It was a beautiful card. I looked inside, and down the left-hand side was where my mother had written at the top, 'I know you would have chosen wisely who was deserving to have you spend the rest of your life with.' In the middle, she wrote marital advice: 'Don't ever go to bed angry with one another, whatever it is, could be talked through.' At the bottom she wrote, 'When your dad lifts your veil and kisses your left cheek, you will feel me kiss your right.' I had to track you down. I didn't know if we were still at Johns Hopkins in the Breast Center or not, but thank God you are, so I could tell you that I felt my mother's kiss. I have always felt my mother's presence through these cards. Now I asked my Aunt Sarah, if there are any more cards, and she didn't answer me. So is this my last card?"

I said, "Are you planning to have a family?" She said, "Yes, we want to start a family in and about a year and a half." I said, "When you learn you are expecting, there is a letter from your mother that she has written that describes how she felt when she had found out she was carrying you. When the baby is born, there is a letter from your mother describing how she felt the first time she held you, and all of her hopes for you in your life. When the baby is a toddler, there is a recordable book of nursery rhymes and children's stories that are recited in your mother's voice, so your children will know their grandma's voice." She was thrilled to hear that. I said, "You will never be without your mother in your life." I'll tell you, I think that these women who have been forced to die might be doing a better job rearing their children than we are, who are here—because maybe we don't write out all of that in a birthday card. Maybe we just write, "Love, Mom."

Maybe we think we're going to say these things on the day she gets married, but the day gets away from us because it's a busy day. Then saying it later doesn't feel the same, so it never gets said. What gets written in these is taken to heart and carried out, always. It's an alternative way to fulfill those hopes rather than having to say, "I'm so sorry you won't be here one day when your daughter gets married." I'll say, "Let's use an alternative way." I've done it for several decades, and I know it works.

Thank you for listening to Oncology Data Advisor. Be sure to check back throughout Breast Cancer Awareness Month for more of this exclusive interview series, all found at oncdata.com.

About Lillie Shockney

Lillie S. Shockney, RN, BS, MAS, HON-ONN-CG: her name is well known in the cancer field, especially in navigation, survivorship, patient-centered care, preservation of quality of life, end-of-life planning and care, and improving the cancer patient's experience and clinical outcomes. She clinically specializes in breast cancer care. Her public speaking, literary work, and notable roles over the last 40+ years are well known to many:

•University Distinguished Service Professor of Breast Cancer (2016-present)

•Former Administrative Director, Johns Hopkins Breast Center (1997-2018)

•Former Director, Johns Hopkins Cancer Survivorship Programs (2011-2018)

•Professor of Surgery, Johns Hopkins University School of Medicine (2016-present)

•Co-developer and medical advisory of Work Stride: Johns Hopkins Managing Cancer at Work

Program (2012-present)

•Co-founder, Academy of Oncology Nurse Navigators (AONN+) (2009-present)

•Former Program Director of AONN+ (2009-2019)

•Editor-in-Chief of the Journal of Oncology Navigation and Survivorship (2012-present)

•Author of 20 books and >350 articles on various cancer topics

•National and international public speaker (1997-present)

A two-time breast cancer survivor, originally diagnosed in her 30s, Lillie has worked tirelessly to improve the care of breast cancer patients around the world. She has worked at Johns Hopkins since 1983. Lillie takes great pride in the AONN+, which as of April 2020, has more than 8,900 members. She has served as a consultant for breast cancer for national ABC News and Good Morning America and has been also consulted regularly by the Today Show and CNN. Lillie serves on 28 medical advisory boards currently. In 2008, the President of The Johns Hopkins University and their Board of Trustees appointed her to a Distinguished Service Faculty Chair. This is the first and only time in the history of the institution that a hospital nurse has been appointed to a distinguished service designation. She continued to climb the academic ladder and in 2016 was promoted to full professor. She is the only nurse at Johns Hopkins to have a primary faculty appointment in the School of Medicine and the only nurse in the country to have reached the highest academic faculty ranking and be appointed to a faculty chair as a University Distinguished Service Professor of Breast Cancer at Johns Hopkins University School of Medicine.

She has received 61 awards—54 national awards and 7 state awards, including being inducted into the Maryland Women Hall of Fame, Women in Business Healthcare Trailblazer Award, Johnson & Johnson's Most Amazing Nurse in America award, National Komen for the Cure's Professor of Survivorship award, and several national lifetime achievement awards. Her research area of focus is preservation of quality of life for patients with metastatic breast cancer. Currently, a documentary is being made about her life and her life's work. She tells people she never forgets where she came from—she will always be "a farmer's daughter."

Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.