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.
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.
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.by Author
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 St. 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
Transcript edited for clarity. Any views are the speakers' own and do not necessarily reflect those of Oncology Data Advisor.