Reframing the Conversation in Metastatic Breast Cancer With Janie Metsker, RN, BSN, CN-BN

For patients with metastatic breast cancer (MBC), Breast Cancer Awareness Month can sometimes be demoralizing in light of pervasive public messaging about finding a cure and embracing survivorship. In this interview, Janie Metsker, RN, BSN, CN-BN, Clinical Coordinator at St. Luke’s Koontz Center for Advanced Breast Cancer, shares ways to reframe the conversation in metastatic breast cancer to prioritize shared decision making, patients’ individual goals, and redefining hope. Additionally, we hear a message from Justin Bray, a patient with metastatic breast cancer, about the importance for clinicians to form relationships with patients in order to understand and develop the best care for them throughout their journey.  

Oncology Data Advisor: Welcome to Oncology Data Advisor. On today’s episode for Breast Cancer Awareness Month, we’re focusing on misperceptions surrounding metastatic breast cancer. I’m joined by Janie Metsker, who is the Clinical Coordinator and Nurse Navigator at St. Luke’s Koontz Center for Advanced Breast Cancer. Janie, thanks so much for coming on the show today.

Janie Metsker, RN, BSN, CN-BN: Thank you for having me today. I’m really excited to share this topic with you. I am the Clinical Coordinator at St. Luke’s Koontz Center for Advanced Breast Cancer and the Nurse Navigator there. In this clinic, we only treat metastatic breast cancer. We have three treating medical oncologists, and I have really experienced and learned a lot from these patients.

Oncology Data Advisor: To start off, what are some of the common misperceptions surrounding metastatic breast cancer?

Ms. Metsker: I think there are several. It’s not a well-known fact that about 30% of women who are diagnosed with early-stage breast cancers will become metastatic at some point. Sometimes, they don’t even know what that means. Maybe those conversations are had with their providers at the time of their early-stage diagnosis, but of course, they’re focused on other things at that point in time. That piece of information gets lost, and it’s easy to think that there have been so many advances in breast cancer that surely it’s curable. That that’s one of the misperceptions.

I think another misperception, and I’ve had patients say this, is that if they catch metastatic breast cancer, it’s curable.” They’ll ask if this is an “early-stage” metastatic breast cancer? While it is not curable, it is treatable. The message today, with all the novel therapies that have come out in the last five to 10 years especially, is that we have been treating this more effectively and we have been able to give women hope and prolong their life with good quality of life.

One other misperception is that if a woman had early-stage breast cancer or was diagnosed with even de novo metastatic disease, it’s because they did something wrong, that they didn’t take the right preventative measures or they didn’t do all the treatment that they were supposed to do. That is a misperception that some people have and one that has some pretty serious consequences for people dealing with metastatic breast cancer.

Oncology Data Advisor: To put this into perspective a little, how many women in the US currently have metastatic breast cancer, and has this changed over time?

Ms. Metsker: It has. Previously, the numbers we had were approximately 150,000 women living with metastatic breast cancer. There were some new numbers that came out in 2020 showing that about 168,000 women have metastatic breast cancer. At first, you might think, “Wow, more people have metastatic breast cancer than ever.” But really, what it really means is that women are living longer. For many of these women, like we mentioned earlier, with those novel therapies that we have, so many new therapies for metastatic breast cancer have really increased the length of life and the quality of life for women.

Oncology Data Advisor: That’s great to know. With October being Breast Cancer Awareness Month, as we’re trying to raise awareness around the disease, what has the impact been of public awareness campaigns specifically for MBC?

Ms. Metsker: I think that it’s a mixed bag. With October being Breast Cancer Awareness Month, in our breast centers we have a little giveaway, and it’s definitely a push in October for people to get mammograms and early detection and so forth. I think that’s really, really made an impact on society and culture for the good. I do think that that public messaging about the cure and survivorship is so pervasive today that women that are diagnosed with stage IV metastatic breast cancer can often feel very stigmatized by that perception that they failed. I’ve had women say to me, “I failed the pink ribbon program. I don’t really like pink anymore.” They feel like they’re not a part of it, and there’s that feeling of, “I failed undergoing my annual mammograms,” or whatever it is. They can put a lot of blame on themselves, and that’s very detrimental to those dealing with metastatic breast cancer. I think we need to bring those components and that message together so that we have better understanding.

Oncology Data Advisor: Definitely. What are some ways that you think we can change this and reframe the conversation?

Ms. Metsker: I think more public awareness of metastatic breast cancer is really helpful, including focusing on quality of life for women with metastatic breast cancer and their loved ones. There’s so much that we should be and can be offering them in the way of support and other things. In our clinic, when first-time patients come in, they see the medical oncologist, but also, they see a dietician, a physical therapist, one of our clinical psychologists who specialize in oncology, a social worker, a spiritual care chaplain, all those services. We try to focus on the whole person. Those are very much a big part of providing that quality-of-life support for people, getting that baseline out of the gate, and then trying to support all those needs throughout their journey.

Oncology Data Advisor: I know we have a patient clip that we’re going to be showing as well, sharing some messages for clinicians about metastatic breast cancer. Do you have any other messages for clinicians you’d like to share that people should know about when they’re treating patients with MBC?

Ms. Metsker: I’d like to discuss that. I want to say about the patient—it was very important to her, in her legacy videos that she’s been creating, that she had some messages for providers and for other patients going through metastatic breast cancer.

Justin Bray: Make sure to ask your patients what their goals are. That will help you with the treatment plan, and you can give different options to somebody based on their goals. But if you don’t talk to them, you don’t get to know them. With MBC, you need a personal relationship. If you do not ask them about those goals, you’re not going to get them, and you are not giving the best treatment to the patient because you don’t know what they want, if they want different things. There are different options. Every journey is different.

Ms. Metsker: I think one of the things around all this is that we have to start to reframe that conversation around metastatic breast cancer. You ask yourself, “What do you mean by that? Who?” For example, there’s a number of people within the care team and people within the patient’s sphere of influence—family, friends, coworkers, civic groups that they’re part of, church groups, spouse or significant other, and ultimately with their self. That can become a very circular conversation with yourself about keeping out of despair but also redefining hope.

One of the first challenges can be with the medical team, and there can be some changes in how those conversations take place. Communication can be a challenge for all of us. In the past, a lot of times, the medical oncologist was the one driving everything. I think we’re helping patients more and more to be involved in their care, with shared decision making as part of that and being able to have those conversations with their oncologist. As providers, we have to remember that patients don’t always know. We can’t use vague language or overly technical medical language because that can be very difficult for patients to understand. We have to make that clear so that they’re not going home and googling all those words that they don’t know, even how we use certain words like “respond” or “cure” or “hope.” Those are conversations between the caregiver and the patient that we have to continue to work on in reframing the conversations so that they are focused on the goals of the patient.

The second thing with family and friends is that we expand those conversations about metastatic breast cancer and providing them with resources, information, and education that will help them in their own understanding of metastatic breast cancer. I can’t tell you how many times I’ve had a husband or a caregiver say, “I didn’t really know what metastatic meant.” It’s about helping them understand, expanding that conversation, and giving them the support they need. I really find that women with metastatic breast cancer become the teachers of others. They’re teaching those around them. When someone says to them, “You look great,” they are teaching them that this is not curable, because sometimes people think that they’re done with treatment. I do think they become the teachers of other people around them.

We can help patients process and reframe their own negative emotions. I’m not talking about toxic positivity, like having to be positive all the time. I don’t know if you’re familiar with the work of Carol Reed Ash, but she wrote a book about those conversations that we have and redefining hope. She came up with four stages of hope, and I’ve always really liked this. She said there’s phase one, hope for a miracle cure; phase two, hope for long life with quality of life; phase three, hope for a shorter life, but with quality of life; and then phase four, hope for a good death. And I don’t think that those are necessarily sequential. Just like the stages of grief, you move from one stage to the other as time goes. As we see new therapies coming out, sometimes these will change over time for patients, but ultimately, we’re helping them redefine hope. That word gets thrown around a lot, and that’s something I have a lot of conversations with patients about—their hope and making those hopes realistic, but also never taking it away because hope is possible throughout the journey.

Oncology Data Advisor: Those are all really awesome messages for raising awareness about MBC and reframing the conversation. As we wrap up, any parting words or messages you’d like to share?

Ms. Metsker: The main message I want to say is for clinicians and then also for people who have metastatic breast cancer—just understanding that the experience is different and much different than early-stage breast cancer. I’ve learned so much from my patients. They’ve taught me so much over the years. One patient, when we were having this conversation recently, said, “I hear people getting to ring the bell when I’m in the infusion area. I’m never going to get to ring the bell because I’m never going to be done with treatment.” So, she got a bell for her kitchen, and every morning when she gets up and goes down to the kitchen and gets her coffee, she rings that bell. She said, “With MBC, I’m not going to get to ring the bell in infusion, but every day I’m ringing that bell because I’m going to live today.”

We want to help patients to live well, to live with hope, and to continue to live life and do the things that are helping them achieve their goals. The patient with the bell said, “Actually, I am grateful for what I’ve learned and for what I’ve gained through having metastatic breast cancer.” That kind of a statement doesn’t happen overnight; there’s a process for getting to that point. I think we need to listen as clinicians and as providers and to have those conversations, not only with the patient, but with their loved ones as well.

Oncology Data Advisor: These are all fantastic words of advice. Thank you so much for coming on today and reframing how we look at MBC, especially in October. It was really great to talk with you and hear about these messages.

Ms. Metsker: Thank you for having me.

About Ms. Metsker

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.

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

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