In 2006, Lillie Shockney, Professor of Surgery at Johns Hopkins University, launched a retreat program for patients with metastatic breast cancer, a weekend-long retreat in which patients, their spouses, and caregivers can focus on communication, support, relationships, personal reflection, and laughter. In 2016, Janie Metsker, Clinical Coordinator at the Koontz Center for Advanced Breast Cancer at St. Luke's Hospital, launched these retreats at her own institution. In this interview with Oncology Data Advisor, Ms. Shockney and Ms. Metsker reflect on the impactful moments that take place during the retreats and their profound significance for the patients who attend.
Oncology Data Advisor: Hi, and welcome to Oncology Data Advisor. Today I'm joined by Lillie Shockney, who is a Professor of Surgery at Johns Hopkins University, and Janie Metsker, who is Clinical Coordinator of the Koontz Center for Advanced Breast Cancer at St. Luke's Hospital. Thank you both so much for being here today.
Lillie Shockney, RN, BS, MAS, HON-ONN-CG: Good to see you.
Janie Metsker, RN, BSN, CN-BN: Yes, I'm excited that we have this opportunity.
Oncology Data Advisor: I know you're going to be telling us today about the metastatic breast cancer retreats that you started and that you run, so I'm excited to learn more about these.
Ms. Shockney: Well, let me give the background on how these ended up being developed. In 2001, I launched breast cancer survivor retreats that were a two-day, one-night stay for patients who had completed their treatment in the last two years but were having trouble emotionally reengaging in their life in a healthy way. These were women who were examining their breasts every morning in the shower, and with any ache or pain, they were convinced they had metastatic disease. It didn't even matter what stage they had. Even women with stage 0 in situ disease were just as panicked and frightened as those with stage IIIC, who did have very high risk for local, regional, and distant recurrence.
In 2005, I got an email from a woman saying, "I see you have survivor retreats and that you open them up to anyone in the country to attend. I can't find the dates for when you are holding stage IV metastatic breast cancer retreats. So, when is my retreat?" And I just stared at my computer screen like, "Uh-oh." I wrote her back and said, "We haven't launched any at this point in time, but tell me what you would expect if I did have such a retreat." She gave me a pretty good laundry list. I took it further and developed a focus group with eight metastatic patients and said, "If we were to take you away somewhere, how long would you want to be away? What would your expectations be that you would come home having achieved, having learned, having experienced? Would you want to be by yourself? Would you want to bring your spouse or partner? Would you want to bring a caregiver if you're not in a romantic relationship? So, educate me."
The agenda was literally created by that focus group and we haven't altered that since, and I started them in 2006. They're three days and two nights in length. We've always limited them to 12 patients and their accompanying family caregiver. I hold two a year. One is for couples, and the other is for women not in a relationship. They do bring their female caregiver. It's a set agenda with some variations if it's for couples versus female caregivers. Of anything I've ever created, I think this will truly be one of my legacies. I really think this will be one of my legacies. I've helped nine other cancer centers launch these and have created a program planning guide to promote other breast centers to also do the same.
There's laughter, which is important. We need some laughter; it gets our T cells pumping. We definitely want some laughter happening at these. But there are also some very serious and profound sessions. In one session, we break the patient away from the person they brought with them. The patients are in the room with me and their loved ones is in the other room with the different co-facilitator. I ask the same question for both groups to answer: "Of everything that may lie ahead, what's your greatest fear?" This is something they've thought about, but in most cases, they have not been able to talk about. It's just too scary. But in a safe retreat environment, they might. And it's got to be the right location, believe me. It's got to be the right place, so they feel safe there—no TVs, no radios, don't touch your cell phone, that kind of a place. We hold ours at Bon Secours Spiritual Center in Marriottsville, Maryland. We've held all of them there. We've not changed our location; it's been consistent for every single one. I've now done 32 of these, so for 32 of these, every single one, it's been the same.
Patients say, "I'm frightened of pain and suffering and there's no way to fix it for me," which launches me into a discussion about palliative care. They'll go, "No, no, no, I don't want hospice yet." And that's a problem because people think that palliative care and hospice are joined, and that the only way you could get palliative care is if you agree to hospice. Palliative care stands on its own. As soon as someone's diagnosed with stage IV disease, they should have a palliative care specialist on their team, even if they don't need them yet. These people refer to themselves as symptom management specialists. I don't even call them palliative care specialists. I say, "This is your quality-of-life coach. He or she's either going to preserve your quality of life or restore your quality of life." They try to do that without using opioids. They'll do nerve blocks or vertebroplasty. I consider them some of the most important people you could possibly have on your team.
So, every single woman or man—because we had a couple men with stage IV too—that's what they always say, "I have pain and suffering and no way to fix it. My family is witnessing me suffering and there's no way to fix it." In the other room, they're saying, "She's in terrible pain and she's suffering, and I can't do anything about it." So, they're talking about palliative care, too. There's a second thing that women usually say, particularly if she's got young children. Very few Hopkins patients come to our Hopkins retreat and think it's because one-on-one, we've been doing this with them. So, these women travel in by plane, train, and automobile. A lot of them are young, as in early 30s, and sometimes they've got toddlers or six-year-olds. They'll say, "I'm afraid I'm going to be forgotten. I'm afraid I won't be here to instill my values in my children, that I won't be here to give motherly advice. I won't see my daughter walk down the aisle when she gets married. And I feel very angry about it."
Years and years ago, I would've said, "I'm so sorry," but I haven't said that for a long, long, long time. Instead, I'll say, "We're going to develop alternative ways for you to fulfill these very significant milestone life goals." So, we do card drives and get people to donate cards for different milestones that children will experience. Maybe she'll be here and can hand her child that card, but maybe she won't be and someone in her family will be the keeper of the cards. These are for when they get their driver's license, when they graduate from high school, when they graduate from college, when they get their first career job, when they get married, when they have their first baby—what do you want to tell your child on that day?
Frankly, I think these women that have passed away and done this hard process might be doing a better job rearing their children than we are here on this earth. Because these children don't throw these cards away. They read them and they do everything that is written in them. Some years back, I got a phone call from a young woman I had never met, and she said, "Oh, my gosh. I didn't know your last name; I just knew your first name is Lillie. You took care of my mother when she was dying of breast cancer. My mother died when I was 10. Each time she'd come home from the hospital, my dad would recruit my Aunt Sarah, my mother's sister, to come over and help him take care of her. I'd hear my mom say to Aunt Sarah, "Lillie said to do this, Lillie said to do that.' But I didn't know who you were or what you were telling my mom until she passed away, and my Aunt Sarah became the keeper of my cards."
She said, "When I got my driver's license, my mother had a card for me. I saw her blue handwriting"— we've lost because everybody types and texts, which makes me nuts, I still want people to learn how to write and cursive—"and it said, 'Please do not drive like your father. Please do drive like Aunt Sarah.' She just cut to the chase." She said, "I wanted to find you. I'm so glad that you're still at the Johns Hopkins Breast Center, because three weeks ago when I got married, as my Aunt Sarah helped me put my veil on, she handed me a card from my mother. I opened the card. The envelope edgings had yellowed because it was 14 years old. I took out the card; it was a beautiful wedding card. I opened it up, and my mother had written at the top, 'I know you would've 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 can 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.'"
She said, "Miss Lillie, I swear to you I felt my mother's kiss. I have always felt my mother's presence through these cards. I asked Aunt Sarah if there are any more cards, and she didn't answer me. So, is this my last card?" I said, "Do you plan to have a family?" She said, "We hope to start a family in about a year and a half." I said, 'When you learn you're pregnant, there's a letter from your mom describing how she felt when she learned she was carrying you. When the baby's born, there's a letter from your mom describing how she felt the first time she held you and all of her hopes and dreams for you. When the baby is a toddler, there's a voice recording of your mother saying nursery rhymes and children's stories so your children will know their grandmother, too." And she said, "That'll be perfect."
So, this card process works, and if anybody questions it, all they have to do is just hear that story and they'll know. I've heard from other women that are grown now too, who said, "You have no idea how important these cards are." When someone goes to a card store, like for a graduation card, those cards are seasonal. They're only in the store for May and June and then they're gone. I tell people to pick up another card, get one more, because otherwise it can be difficult when you're trying to find these cards to be able to do that.
We do surveys at the end and surveys again three months later and a pre-survey as well. One of the questions is, "I am fearful for my future." Most women will score that very high. They're quite frightened about what lies ahead. While they're still at the retreat, they might score it, let's say, instead of being an eight or nine, now it's a four. Well, you really know how well the retreat went when you ask them again three months later, that this just wasn't a weekend and that it wore off, that this is going to see them through. It's rare for someone to score themselves above a four, three months later, If they're still alive. It's profound.
I'm particularly proud of Janie for having decided, "I want to do this for our patients, too. I want to take this on, and I want to make this happen every year." So, Janie, can you talk about yours and the event that you do in the evening for the couples in particular? And then I'll tell them what event we do that's so much fun.
Ms. Metsker: I want to follow-up a little bit about the cards, and I just love those stories. We also do cards—and being here in Kansas City, we have been getting nice donations from Hallmark, which has been nice. We've had that, and it's really been meaningful. One young gal in her 30s had been diagnosed and had written a wedding card to her sister; she just wanted to have that for her sister in case she passed. Well, the best part of that story is that, guess what? She was still alive. I know you've experienced this, Lillie, where they feel like, "Well, if I write those cards, am I hastening my own death?" And it's not. They may be there to give that person their card.
Ms. Shockney: I have cards for my grandchildren. I hope I'm here, right? But I could be hit by a truck. I've traveled the cancer diagnosis treatment road several times now. My granddaughter just turned 14 earlier this month, and it was a joy to put that card in her hand that I had written quite some time ago. It's a way to have control, isn't it? I like control. These women are in a land of having no control. So, whatever we can do to give them control, this is one of those ways. It's such an easy thing to do. The simplicity of a card and the impact it can have because of the words that woman writes in it is amazing.
Ms. Metsker: One other point on cards and letters, I have a good friend who was 11 years old when their mother died many, many years ago, back in the '50s. One day when I was talking to her, she started crying—I mean, she's 65 now—and she started crying and she said, "I'm still looking for the letter." The point of this is that it's helping people leave that legacy.
Let me just tell you a a little bit about how that started here, because I think it's important. So, Miss Lillie had presented about these retreats at a couple of different conferences I had been to and had some videos and things. There's not a dry eye obviously when she shows the videos of people talking about their experience at the retreats. I had taken that all in. Here at our center at St. Luke's, we have our oncologist, Dr. Timothy Pluard. He had a vision for many, many years to have a center dedicated to just metastatic breast cancer, since it's really another subset of breast cancer treatment in and of itself—even more so today, Keira, as we're preparing for this breast cancer symposium, because of all of the advances in the last five years. I mean, imagine, Lillie, from when you started the retreats until now, how many more options there are for people? Yet there's still not a cure, but it has become more of a long-term, chronic condition.
Ms. Shockney: For 70%, it will be a chronic illness, and they can live a decade or two with treatments like CDK4/6 inhibitors that have just turned the current treatment world around on such a paradigm shift.
Ms. Metsker: The treatments for human epidermal growth factor receptor (HER2)–positive disease are now being extrapolated even into patients with HER2-low disease. There are a lot of things that are happening just in the last six months. That's a wonderful blessing, but it can also be an opportunity for patients to want to put that off and not believe this diagnosis can still result in their death, sooner than it would've been. It's such an important thing that we're doing with this.
Anyway, to make a long story short, Dr. Pluard started this center in 2016. Right when it started was exactly the time that the notebook came out with Lillie's content put into a wonderful retreat kit, if you will, with a lot of the resources. She just put it all together and provided it to us. Dr. Pluard called me into his office and said, "I have something for you." He was already saying, when he started the Koontz Center for Advanced Breast Cancer, that we need to do these retreats. I'd seen these and told him about them probably a couple years even before. He had the notebook that been brought to him by someone, and he had handed it to me. He said, "Here it is, I want you to do this." And I said, "Plan it?" He said, "Yes, a thousand times, yes." So, that began the process, and it took really a full year to plan the first one even with that, because the most important part is getting the place.
Ms. Shockney: Mm-hmm, got to have the right setting.
Ms. Metsker: I totally agree. I looked around, visited a few places, and ended up with the best place. It's called Circle S Ranch in Lawrence, Kansas. It's just far enough away from Kansas City area that people have to drive about an hour. They can't say, "Oh, I've got to get to my kid's soccer game." The expectation is that you come and you're staying for the weekend, from Friday night until Sunday. I'm very passionate about that timeline, Lillie. I know sometimes people try to shortcut it and say, "Well, we'll do a one-day thing," because of the resources for this as providers. Somebody said to me at the beginning of our administration, "Now, this isn't going to use very many resources, is it?" And I said, "Oh, yes, it is going to use a lot of resources."
It's not just the financial resources, because we've been so wonderfully blessed by the National Breast Cancer Foundation (NBCF) to help us with these retreats through the grants that they provide. But it's people resources, building that team. We have a multidisciplinary team that we work with. So, I started planning the retreats. The long and the short is, that following fall of 2017, we were able to have our first couples' retreat. Then the next year, we started doing the two. We just did our couples retreat this past August. November 4th, 5th, and 6th is our singles retreat, where they come with a caregiver. It's really a very different dynamic. I know this was something I've heard Lillie speak about, how the experience with the couples and the caregivers is so very, very different.
Ms. Shockney: Yes, one of the things that is very different between the couples coming and the singles coming with a caregiver, is the husband and wife are very honest with one another. I frankly think it ties back to their marriage vows. Whereas, with the single patient who's bringing her mother, her sister, her daughter, or maybe her best friend, whoever is that's the primary person taking care of her, she's not always as honest. When questioned, she'll say, "I've been such a burden already to my sister or to my daughter, to my mother. I went to my last appointment alone because I knew I was going to get bad news. I'll decide when I want to share that news, and I'm not ready to share it yet." That's not good, because you don't want the person who's trying to take care of you to be in the dark about what's going on or to be shocked later. We need them to commit to one another.
I actually have them write a letter to one another at the retreat, saying that they will always be honest, that they will always commit to one another to be honest, and that trying to protect her is not a good idea. Stop looking at yourself as a burden. What are the things that your loved one, who's come with you, says are the pearls that have come out of going on this journey with you? There are some good things that have happened, so let's focus on them. The other is honesty from their provider. Not all physicians are comfortable giving bad news. If they're not comfortable giving bad news and they don't do it well, I'm not sure they should be taking care of stage IV breast cancer patients. Maybe they should specialize in earlier-stage because you've got to be able to give bad news, and you can't fluff it up and flower it. I mean, I don't want you to look like the angel of death, but honesty has been proven through clinical research to be the number one thing that a patient expects from their doctor. Honesty.
We had a gal attend our retreat where she brought her mother with her. Her mother was in a wheelchair. So, you've got a 30-something-year-old with stage IV breast cancer, triple-negative. She had a three-year-old, and her mother's in a wheelchair with multiple sclerosis (MS). They're trying to take care of one another. But the patient had a three-year-old daughter and no husband, no siblings. She was getting treatment in Virginia. She said that she had asked her doctor at her last visit, which was just a few days prior to the retreat, "How many more treatment options do I have left? I'm on my seventh line of therapy," which is a lot. She said, "With my last treatment, I only got through three months when you had to switch me to this new treatment." Her doctor said back to her, "We don't have to talk about that today," and she went, "Oh, okay."
I said, "But you wanted to talk about it?" She said, "Yes. My mother can't raise my three-year-old. I've got to find someone I can trust to be a guardian or adopt my three-year-old daughter." I said, "So, Monday, you're going to call his office and you're going to say, 'I'm going to see you this week and we're going to pick up where we left off because I have to know, I need a timeline.'" She saw him on Monday, and she called me on Tuesday crying. She said, "He told me this is my last treatment." I thought that was horrific. It was because he wasn't comfortable talking about it. She was ready to talk about it. She needed to talk about it. Well, the matter was that he didn't even know she had a three-year-old. I thought, "Where did patient-centered care go? Why doesn't he know you have a three-year-old and a mother with MS?" We need providers to be honest. When somebody asks you for a timeline, none of us are God, but you've got a pretty good idea. You really do. You can give a window because they need time to plan; they need time to get their affairs in order.
There are nine elements needed to experience a good and peaceful death. You need to know your purpose for living and that it was valued by at least one other person. You need to leave a legacy unrelated to leaving money for something. It isn't like you need to leave money for your name to be on a building. It could be a philosophy. One of my legacies will be these retreats, for example. There's giving forgiveness and receiving forgiveness—which doesn't mean you forgive everybody that you feel has done you wrong, but you need to think about it, and you need to have a discussion about it. There's having all legal and financial affairs in order; less than half of people with metastatic breast cancer have done that before they die. Let me tell you, it's a nightmare for the family if those things aren't in place, and the doctor doesn't know, because he never sees the family again.
There's leaving no financial debt for your family associated with your cancer treatment. We do that very poorly in the United States. Drugs and copays are horrifically expensive. Adult children will say, "Mom, don't worry about it. My brother and I will take care of it." Did she ask her brother? No. Now, the mother dies, and she says, "Oh, by the way, you and I are going to take care of whatever bills are left." He says, "I didn't agree to that." Then the daughter says, "By the way, since you make twice as much money as I do, I'm going to prorate this, so I'll pay a third and you pay the other two-thirds," and now they aren't speaking again. There's being pain-free, which is doable with effective palliative care, very effective. There's feeling connected spiritually to a higher power, which for some may not happen until the last hour. Finally, there's feeling confident you'll be spoken of fondly after you're gone. That's really important to people. They know you're going to say nice things about them while they're here. They want to know what you're going to say after they're gone.
So, I review all of those nine things now with them and give it to them as a printout and say, "This is your homework. I have completed my nine, so I know I'm in control. I want you to complete your nine. I want your husband to complete his nine. I want your caregiver to complete her nine. You don't have to be actively dying in order to do this. You really should have it done way ahead of time." It's a wonderful conversation to have with people. I mean, it really is. It's so thoughtful and really makes you think about your relationships, what's important to you and what isn't. It's what we should be doing for these folks.
So, Janie, what do you do on Saturday night with the couples?
Ms. Metsker: When we started the retreats and we took the kit—I joke, "Add water and a retreat pops out," well, that didn't happen, I tried it and it didn't happen—it's a lot of work. But we really followed the retreat curriculum, and we tried to do that out of the gate so that we were really looking at the way they should be done. We ended up doing some research with that. I asked Lillie, "Have you actually done formal research?" And she said, "No, so do it." So, we did, and I want to come back to the research findings because it was a very wonderful retreat design. But we started following the curriculum, and we have a multidisciplinary team that does our retreats—myself, and then we have had other nurses plan. I'm trying always trying to get others to come in and have them catch this vision, so that just because somebody leaves an organization or is gone or retires or dies or something, these things can go on—again, legacy. I think this is also part of my legacy, the things we've done here and the way we've implemented these. I think we were the first ones to implement these after the kits came out.
Ms. Shockney: Right.
Ms. Metsker: One of the things we start with is on Friday night, we do a session on the power of story. Then on Saturday, we have our psychologists who work with our oncology patients. They're there, as well as myself. We've had a chaplain who's helped with that, and social workers and others. We also divide them out into the two. The patients separate from the caregivers or spouses. The work that they do is just amazing, as they bring up all the topics related to the fear and what they're dealing with. Just at one of our recent retreats, a husband in the spouse's group said, "I'm about ready to implode. I have put my whole career on hold, I'm not advancing in my career because of the cancer." He had never even talked to her about this. These things that come up can be really heavy.
You go through the morning, and then we have lunch, and then after lunch there's a time where they come back together to discuss these things. A lot of what comes up is about end of life. That's a big one. There can be other things with kids and the dynamics that are happening in the family. The list is endless. Sexuality came out at our last one with the couples, where the women were bringing up sexuality. Our nurse clinician, Dr. Pluard's nurse, was there with that group. They came up with a signal—Lillie, you're going to love this—they came up with a signal, because the doctors are willing to talk about this. Our doctors are very willing, but the patient has to bring it up, and you see these patients weekly or monthly or sometimes more than once a week. The cue is that if the doctor wants the nurse to bring it up, they give her a little wink-wink. Those are things that come out at our retreats.
But the thing is, once you're done with that, it's heavy. The Saturday content and the things that they're bringing up, while it's freeing and all that, can be difficult, and it's emotional. There are all kinds of things with that. So, then they have massages, and we have a wonderful gal who comes and does restorative yoga. It's just so relaxing. Then you do the evening activities. Well, I had been involved with a group in Nashville several years ago, a young survivors retreat—not metastatic, but it was fantastic. They had had me come and be their nurse, and that's how this idea came about for a special event where they can dress up.
Literally, it was one of those things that came to my mind at 2:00 AM—you know how this is, you sit straight up in bed and you're like, "I've got it." A Beyond the "C" prom. It's beyond the C, the cancer C, the big C. We don't just do it for the couples, we do it for the singles, too. I tell them, "You can dress up as much as you want, and there's no such thing as too dressy. I don't care if you come in your jogging pants, but you can wear a cocktail dress. You can wear the dress you have in the back of the closet that you wore at your daughter's wedding. This is the time to pull it out and wear it again." To be at the retreats, they have to be well enough to be there, and so they really get dressed up. It's a wonderful time. I will tell you, more than once it has happened that it was really the last good picture, and they looked healthy. We have some fun with it.
Our whole theme is the sea. We have an ocean theme. It's very beautiful. There are just all kinds of things to it. When we started the first one, I had a gal, who was one of our cardiologist's wife, and she took on the task of designing all of the decorations for us. I said, "I budgeted the money for it in the retreat budget." It's stuff that will last that we can use over and over. It's just really beautiful the way they do it. Then we have a wall where we have a fishnet and all this stuff, and then they have funny little props that they can do. We do some serious and some fun pictures. I have been asked for those pictures from those retreats for funerals many, many times, and I provide them to them.
Then we also have a photographer who comes every time and videotapes and does a whole videography session with them. We do that at every retreat. It's something that's so worth the money. I would love to share one of those sometimes with folks, because Beyond the C retreat is so much fun. I'll tell you, when it's with the couples, it's the one moment in particular. Sometimes these are really emotional for us as caregivers. But, man, I'll tell you, when I'm standing there and watching the couples dance, knowing what's at stake, and many of them have been so focused on the cancer for so long that they haven't had any fun, and you see them connecting. I have them send me their special song, so we play that, and they get out there and they dance, and you just can't help but stand there and let the tears roll, because it's just so sweet and so special.
Then we do the singles. Well, it's a lot of work sometimes to get them out there dancing. I have them send me their songs too, and they're more reluctant. I don't say, "your special songs," just songs they like." There are various ones, sometimes they send, like, Amazing Grace, and that's great. We play that during dinner—we have a special dinner that night—but that's not exactly dance music. The very first time that we had the singles, two or three of the girls came together to me and said, "We're really concerned about this prom thing, who are we going to dance with?" And I said, "Well, you know what? I don't need a man to dance with me. I don't follow anyway. So, no worries, we're here to have fun." I was trying to engage them and get them out floor, and they were all so reluctant and said, "No, no, no." But once I got them started, I couldn't get them stopped.
Ms. Shockney: That's great.
Ms. Metsker: Then they gave me their songs, so I added them to the playlist, and we were pulling them up and playing them. And oh my gosh, they had so, so much fun. It just brings that mood up after that heavy day, and they connect with one another as well. It's really special. Then afterwards, after the dancing and the dinner, we do the "almost newlywed" game and something different for the singles. We've done various versions of that where it's what we call the "friendship" game. I know you've done some other things with that. It's a really special time that lightens the mood and helps them have fun too.
Ms. Shockney: I love doing the "almost newlywed" game. We use the questions from that game that was on in the 70s, with questions you could print off of the Internet. We buy awards from the Dollar Tree. We've got big baskets of things and they get to select them, which is fun. I'll ask them after we're done, "What did you learn from doing the game?" The answer's always the same is, "I don't know very much about my spouse, or my spouse doesn't know very much about me," or something to that effect. And I'll say, "Anything else that you came away with from the game?' They'll say, "It felt good to laugh. I haven't laughed in a long time." And I'll say, "For two hours, nobody had cancer in this room."
Ms. Metsker: Exactly.
Ms. Shockney: I say, "You can escape this whenever you need to, whether it's going to a movie in a theater or doing something else, but you don't have to have cancer on your brain and in your life every minute of your day and night. This is the way to get away from that." For ours who come who are single and bring their caregiver, we have them create and paint masks, these papier-mache masks. They start off being beige in color. We've set up a table that's got paint and words they can put on there: "hope," and other words, cloth flowers, sequins, and all kinds of decorations. I'll say, "I want you to decorate the outside of your mask how you want the world to perceive you; the inside of the mask, how you perceive yourself." Boy, does that tell you bunches. I have the caregivers do this also.
One woman who came with her girlfriend, and when she arrived at the retreat center, she had on a pink hat, hair dyed pink, pink shirt, pink pants, pink socks, pink shoes, lots of pink jewelry. Usually, women with stage IV disease don't like pink. So, the other patients were put off by her, seeing her like Pollyanna and all happy and fun wearing pink. She was bubbly, and she said, "Things are going well and my cancer has spread to my liver, but I'm fighting each day." They would look at her and just thought, "Oh, dear." When we got to making the masks, the outside of the mask was all pink, pink flowers on it, "survive" and "hope," all this. The inside, she painted totally black. And I said, "Tell me about your mask." She she said, "I want people to be with me and around me. If they see me and I don't look well that day and was in my regular clothes, maybe they won't ask me to go with the group to dinner or go to a movie or come over to my house and sit and talk with me. So, I try to look a whole lot better than I feel and I try to be upbeat and perky, because that's what they will accept. But to me, the only thing left of me is my cancer."
Good grief. So, the other patients went to their rooms, told her to stay put in the big room we were in, and brought her some of their clothing, a different shirt, a different pair of pants, different socks. Somebody brought her a pair of sneakers that was one size too big, different hat, which actually she could cover up all of her hair in without seeing that pink hat. The message that these ladies gave her was, "Just be yourself. You are a valuable person, and if your friends don't want to be around you because you have stage IV breast cancer, you need to get different friends. They're not your friends." That was quite a profound experience for all of us. But it taught me a lot about how people may be disguising themselves to act and try to feel better than they really are. Her girlfriend was stunned, absolutely stunned and in tears that this is what this patient had been doing all this time.
Ms. Metsker: I can tell you that even with the number that we've done, I'm always looking for the big win. What was the win of this retreat with different people? But one of the things I wanted come back to is the research that we did. It was a really well-designed study. It's very rare that there's any information out there about the effect on the spouse or the caregiver. We did it with both the singles and the couples. Of course, that's a very different dynamic in the experience of the retreat. There was a combination of free tools that we used. One of them was on quality-of-life measures, one was on emotional intimacy, and the other one was on gratitude. It was a very interesting study design.
What we did is on Friday evening when the participants would arrive, we had a research assistant, who was very detailed. We went through the independent review board (IRB) process. It was a real study that we did. She would administer this tool at the beginning of the retreat, to both the patient and the person who was with them, either the spouse or caregiver. Then at the end of the retreat on the last day, on Sunday afternoon, they would do it again. Right after lunch, we would have them do that survey or the tool and then they would send it out about six weeks after the retreat. I think we had 100 people who were a part of the study. What really emerged was, a significant increase in gratitude and some slight increases in emotional intimacy and also in quality of life. It's just a very interesting study.
We had also started a program called the Last Chapter group. There's a notebook, and because of the pandemic and so forth, our psychologist did this as a virtual four-week thing. We had some groups who were doing it who had been to the retreat together. I know Lillie's had this experience as well—at the retreat, they all share all of their contact information. Every single group is set up with a private Facebook group. They're staying connected. They're having dinner together. They've gone to the funerals and memorial services for the people who were at retreat.
Ms. Shockney: They'll even travel a long distance to do that for one another. It's incredible.
Ms. Metsker: It was very interesting that some of the ones who had participated in this Last Chapter group were about two years after the retreat that they attended. Very fascinating. The same research assistant was helping us and identified three additional measures that were not part of the original study, and it's significant. What they were saying by that time two years later was that the retreat changed their lives, changed or improved their marriage, and gave them a new unique sense of purpose. Those were not themes that emerged even at the six-week mark. It's so amazing. That comes out of, I think, the relationships that were built, and they continue to support and really love one another and just there for one another. I mean, that just is so important. And they still include the spouses or the caregivers when they get together and that person has passed. They still include them, and they come and have breakfast together.
Ms. Shockney: They've become a family in such a short period of time. Some people have said to me, "Well, how much can you accomplish in a weekend?" I'll say, "Don't underestimate what is accomplished in a weekend." Because these are also long days, too. It isn't like a seminar where arrive at 10:00 and you leave at 4:00 or something like that. I will also ask at breakfast, "Did you continue to talk about this subject after you got to your rooms?" And they do talk about sexuality and intimacy when they're in their private rooms getting ready to sleep or lying in bed about to go to sleep. One woman said to me, "You opened the door for us, but we were able to really talk about it, because we didn't have to give one another eye contact since the room was dark in our sleeping room." How about that? "We didn't have to look at one another eye to eye and have that conversation. We could lay their holding hands and speak in the dark about what we're worrying about." That was very interesting. I hadn't thought about that before, but it's like the retreat is 24/7 without us requiring that it be 24/7.
Ms. Metsker: There's so much you can accomplish because it's not just from 10:00 am to 4:00 pm or whatever. On Friday evening, we have a bonfire after our evening session. They can roast marshmallows, and people are just staying by the fire sharing what they do with their lives. One lady told this really young patient, who was putting things off, "Go to the beach." I actually have an article in Conquer where I interviewed that patient, and it was called "Go to the Beach." But there's just that relationship at the meals, and they're getting to know each other. They are also giving each other therapy, as well.
Ms. Shockney: They're networking, because they haven't necessarily had that opportunity to talk to others that are in that same boat with shark-infested waters around them. The spouses or partners have definitely not had that opportunity. So just getting to talk to another husband or another partner is really what draws men to come with their wives, I think. They want to have that experience with another spouse to make sure that what they're thinking is what others are thinking, and it is. What they're worried about is what everybody's worrying about. I think that's one of the catalysts for them to remain on this closed Facebook until there's just one person left. It has always impressed me that they have gone to one another's funerals. I personally think that's part of a preparation for themselves and for their loved ones to be able to do that.
One of the husbands contacted me after his wife died. They lived in the Midwest. He said, "I'm going to be traveling to the spiritual center, and I would like you to meet me there. You tell me what day in the next three weeks I could meet you there." So, we set up a date, and he came on a motorcycle. She had been cremated, and he said, "She asked me to spread her ashes on the labyrinth." We have a stone labyrinth there that we do a walking exercise on. He says, "In every group that comes after, she wants you to tell them that she is walking with them." Well, that's pretty profound. To want your ashes to be spread where you attended a retreat? But it is so meaningful to these patients when I tell them, "This woman's ashes are spread so she is walking with you." They're just so touched by that. They're so moved by that. And it wasn't like he was traveling 10 minutes to do it. He came 1,500 miles to do it, because that's where she wanted her ashes. I was like, "Boy, that's profound." It's really profound.
Ms. Metsker: The other thing we do at the end, is everybody gets a little key. It's like a little skeleton key. I start with the key and have it in my hand, and then the first person will share, and it's going to be the key for that person to tell their key takeaways from the weekend. As they tell what it is, they pass that to the next person, and the next person, and the person around the circle until it gets back to them.
For everyone who touches that key, it's symbolic. Our lives evolve and been bonded together and touch together. Everybody's touched their key, and they hang to those. People just love that. It's really that wrap-up time to say, "These are the keys we're taking away." That's one other little thing that we do as well.
Ms. Shockney: One of our metastatic breast cancer patients from Hopkins has now been living with stage IV for 11 years. She's hormone receptor–positive, HER2-negative, on a CDK4/6 inhibitor. The last two years, her scans have been NED, No Evidence of Disease. I told her she needs a T-shirt that says, "I'm sleeping with NED, I'm in love with NED, I hope I always have NED." We get donated pewter tokens that have words on them, and on the other side we'll have an image of something. They might say "hope," or they might say "love," or they might say "strength," or some word. Over the three days of the retreat, she sizes up each person as to what would be the right token to give them. She presents them with the one that she thinks speaks to them, for the patient and for the person that accompanied the patient. That's been a nice exercise to do at the closing.
You mentioned about the National Breast Cancer Foundation, and I want to bring them up again. They are funding quite a few of these retreats across the country. If anyone is interested in more information or launching their first or second or third retreat, they can contact NBCF and see the grant submission box. It's not a complicated grant to write, thank you God. They try to make this as easy as possible in order to provide the funding to hold these. They have historically always funded our retreat that's for the patient bringing their female caregiver. Then I have philanthropic donors that fund the couples' retreat. It is important that these be free to attend. Patients have to provide their own transportation, but once they're there, everything is free, and the impact is immeasurable.
There are so many things that we will never know got discussed, because they were still discussing it when they drove home, still discussing it six months later if the patient's still alive. It's pretty profound. We want to be honest with our patients always, always, always. We want to let them know how many more treatment options are available and the likelihood that these treatment options are going to buy them more time while also preserving their quality of life. When I'm hearing a presentation, particularly it's on a new drug—"Oh, we got this new drug, we're going to be offering this to stage IV patients"—they'll show the line on the graph of how much longer this person lived by taking this drug versus those that weren't on the drug. I'm the one that puts her hand up and annoys the speaker and say, "What was she doing during those extra three months? Was she in bed? Was she in pain? What was her quality of life? Because if she didn't have quality of life and you're telling me you forced her to exist for three more months, we need to focus on what the patient's life goals are. What are her goals of care?"
All too often patients will agree to treatment to please their doctor; 23% of patients with cancer die in the intensive care unit (ICU) on a ventilator because there was no discussion about planning for end of life. That's a crime that just should not be. It's a horrible way to see somebody die. It's a horrible way to die. If individuals listening to this say, "No, I don't have good skills when it comes to giving bad news," there are some courses online they could take. I regularly do presentations on the art and science of giving bad news. We owe it to our patients. If we're going to take care of patients with stage IV disease, we owe it to the patients to take good care of them.
That means listening to them, answering their hard questions honestly, and having them experience a good and peaceful death rather than saying, "I'm so sorry I couldn't save you." We knew from the start we couldn't save them. One day we will be able to save them, but until we're there, let's provide them the very best care, which may not be treatment. Let them decide when they want to stop treatment rather than constantly offering another treatment. Don't just treat the disease; take care of your patient.
Ms. Metsker: As a follow-up with that, I do want to give a little plug for the symposium on November the 12th. There are a lot of treatments that are out there. Many of the novel therapies that we're seeing come out are really horrible for patients in terms of side effects and managing those side effects is up to us as clinicians. We need to have that communication with the patient, to engage the patient, to get to know what the patient's goals are. That's absolutely essential. We have to know, what do patients have coming up? What are their plans? What are they living for? What is it that if they can't do X, Y, and Z, they will have no quality of life?
I think it's really important to know that. It's a definitely a point of this symposium, where the group is presenting these novel therapies. I am personally doing PARP inhibitors and PI3K inhibitors. There are others who are doing some of the other novel therapies. I think it's going to be a really great conference. If you have not heard about it, I'm sure Keira or one of the team from i3 Health can help get you the information, because I think it really does speak to the new things that are available so that patients can have quality of life.
With many of the oral and IV treatments, we need to work around what the patient's goals are. It may mean if they're on an oral CDK4/6 inhibitor or a PI3K inhibitor, an oral medication, that when they take that trip, you may have to see if you can get it filled someplace else, so they get their medicine on time. There are a lot of logistics that take extra time but are so worth it, and you know that they can continue to live life, that they're not being controlled by the cancer, and that they can have quality of life and meet the goals that are so important to them.
Ms. Shockney: Give them a drug holiday if their daughter's getting married, or give them a drug holiday if they have a 25th anniversary to celebrate. We want them to still enjoy living. As I said, not just existing—we want them to still have joy in their life. Life's not worth living if we don't have joy.
Ms. Metsker: Absolutely. I think that the symposium will give caregivers a lot of good information that will help with some of that quality-of-life issue and helping engage patients into the shared decision making that we have with patients and their families with metastatic breast cancer.
Oncology Data Advisor:This has been a really fantastic conversation. I can't thank you both enough. Thank you so much for being here with us today and for sharing all this.
About Ms. Metsker and Ms. Shockney
Janie Metsker, RN, BSN, CN-BN, is the Clinical Coordinator at the Koontz Center for Advanced Breast Cancer at Saint Luke's Hospital in Kansas City, Missouri. As a Nurse Navigator, Ms. Metsker provides support for patients with newly diagnosed and metastatic breast cancer throughout the course of their diagnosis, treatment, and survivorship. In addition, she coordinates two annual retreats for patients with breast cancer and their support systems.
Lillie Shockney, RN, BS, MAS, HON-ONN-CG, is the University Distinguished Service Professor of Breast Cancer at Johns Hopkins University. In addition, she is the Co-Founder of the Academy of Oncology Nurse Navigators (AONN+), Editor in Chief of the Journal of Oncology Navigation and Survivorship, and the author of more than 20 books and 350 articles on cancer care and survivorship. A two-time breast cancer survivor, Lillie has worked tirelessly to improve the care of breast cancer patients around the world.
For More Information
Metsker J (2019). Go to the beach! And other lessons from a Journey of Courage and Hope retreat. Conquer, 5. Available at: https://conquer-magazine.com/issues/special-issues/volume-5-september-2019-women-s-health/1037-go-the-the-beach-and-other-lessons-from-a-journey-of-courage-and-hope-retreat
National Breast Cancer Foundation (2022). Breast cancer research. Available at: https://www.nationalbreastcancer.org/nbcf-programs/breast-cancer-research
National Breast Cancer Foundation (2022). Available at: https://www.nationalbreastcancer.org/
Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.