Telling stories, making meaning: LBBC launches metastatic breast cancer video series
9 women living with MBC share personal stories, candid insights, and practical tips to make meaning for themselves and others
No two people react the same way to a metastatic breast cancer diagnosis. Some describe feeling “surreal” or “like living in a fog,” while others liken the experience to being thrust into “a club no one wants to join.” No matter the initial reaction, it’s reasonable to ask: What do I do now? Who can help me? What happens next?
Telling stories, making meaning, Living Beyond Breast Cancer’s new three-part video series, aims to provide answers to these and many other questions to help people newly diagnosed with metastatic breast cancer navigate their new reality. Metastatic, or stage IV, breast cancer has spread away from the breast to a distant area of the body such as the bones, liver, lungs, or brain. MBC is not considered curable, and most people are in ongoing treatment for the rest of their lives.
“From when I was as a newly diagnosed person, walking around in a fog and not really knowing anything about cancer to now where I feel like there's a chance that I might die with this disease instead of, of it, there has been a long journey....I would tell anybody who's newly diagnosed to get as much information as you can,” says Susan, who has been living with metastatic breast cancer since 2015.
Susan is one of nine women who appear in the series of three videos, sharing their real and often raw experiences living with stage IV breast cancer. They've all been through treatments, tried different kinds of chemotherapy and complementary therapies, and dealt with side effects. By sharing their lived experiences, each woman endeavors to show others with a similar diagnosis what their emotional trajectory might look like, and how they, too, can move forward.
While there is still no cure for metastatic breast cancer, the experiences of the participants in the video are a testament to the many advances in treatment and care, and the significant improvements that have been realized over the last two decades.
“When I was diagnosed 18 years ago, I was so scared because there wasn't a lot of information on metastatic [breast cancer]; I had no idea what it was. And a lot of people didn't know what it was,” says Thomasina, who has been living with metastatic breast cancer since 2004. “Now, it's way better than it was back then.”
L-R Susan, diagnosed in 2015; Thomasina, diagnosed in 2004; Chelsey, diagnosed in 2019
The three videos in the series, Moving forward, Finding your people, and Coping & making plans, are designed as standalone stories about how these nine women have made meaning of their diagnosis as well as the information, people, and organizations, such as Living Beyond Breast Cancer, that have helped them along their individual journeys. Collectively, however, the videos offer, as Chelsey, who has been living with metastatic breast cancer since 2019, says: “hope or a pathway to the future.”
Gathered together in the kitchen and the living room, a group of women from various walks of life share their personal stories living with metastatic breast cancer, including how they manage work, parenting, and daily life, and offer insights and tips to help others find a way forward.
Finding your people
From letting go of people in their lives who don’t “get it” to connecting to people who do (be it family, friends, or in an organized support group), a diverse group of women open up about the importance of a community of support while navigating the complex medical, emotional, and financial challenges that come with a metastatic breast cancer diagnosis.
Coping & making plans
From managing “scanxiety,” depression, and other emotional concerns to the benefits of getting out of the house, even planning a vacation, a group of women living with metastatic breast cancer engage in real and sometimes raw conversation about how they cope and find comfort and joy in making plans.
Photos by AK Cespedes and Hannah Elizabeth
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Moving forward transcript
When you're first diagnosed with metastatic breast cancer, you are in a haze. It feels like life has paused for a minute. If you've never heard the word metastatic before, you have no idea what that means. When I heard stage IV breast cancer, in my head I was thinking, okay, is there a stage V? Is there something above this? And to find out that no, stage IV means terminal, it's a shock because you don't think ever in your life that you're going to get news that you're terminal. It changes everything around you. Two days short of my 29th birthday, I found out I was metastatic.
It was stage IV at the beginning.
I was also stage IV from the beginning. So stage IV de novo, 39, month before I turned 40. For me, it was all over my body. I felt absolutely fine, but I had cancer everywhere except for my brain and my spine.
[inaudible] in the salad too.
All of the little muscles that I have are going into rolling this pizza.
[inaudible 00:01:20] all want peppers in their salad?
Do you want me to cut the peppers?
Yeah, can you cut the red pepper?
The red one?
One time my boss said, "You don't really seem to get too stressed out. You just really seem to handle things well." And I'm like, "Whoa, this? You want me to get upset about this?" On my grand scheme of things like, this is not a big deal.
Yeah. Maybe because I'm a cancer survivor, I just don't sweat the small stuff anymore. We have plenty of time to worry about what's going to happen down the line, so I'm not going to worry about it now and waste the present stressing out.
It's important to find those things that bring you joy because cancer is very clarifying. It's like I don't have time for any negativity. I don't have any time for any toxicity.
You've got to clean out your closet with the negatives.
Does it bring you joy? Everything. Does this, does this?
Same with people.
Get rid of it.
I was going to say, with people-
Same with humans, same with-
It's okay to cry. I have had moments where I cry in the shower because I don't want my daughter to hear me, but my bones hurt.
There's this sense of desperation at moments and sometimes we just need to take a beat and take a minute to just collect it and figure out what is best for you and what's going to work best in the process of your healing and your medical journey.
Focus on structure in your life because you're going to have to live with this forever. Whether you're early stage or metastatic, breast cancer is going to be with you in almost every decision that you make, in almost everything that you do. Make sure you get the full diagnostics together to know what you're dealing with in order to move forward.
A median life expectancy for metastatic breast cancer is around three years. And about a year after my metastatic diagnosis, I leased a car. And a car lease is three years. And I was like, "So, whatever. I'll still be here to get the next car. I'm already one year into my three years. I'm going to keep going." Keep going.
I believe that we all can commit to living. Dreaming about whatever it is that we want or how we want our life to be gives hope or a pathway to the future. And I just really want to encourage people to commit to that.
Finding your people transcript
When you're first diagnosed, it's very overwhelming. It can be very lonely. You feel like no one really understands. You have to be ready to accept other people into your life. It took me a while to find that group and once I found it made a huge difference because I didn't feel so alone.
When I was diagnosed with metastatic breast cancer, I had initially been diagnosed stage three in 2016, and it wasn't until I finished chemo that they had realized that the cancer had already spread to my spine and I was rediagnosed only about six months later. So I had to feel everything all over again. The anger, the sadness, the fear of being a young mom and having two little boys and dying.
It's important to find a good group of individuals that can relate to your situation. They can support you in a way that only they could understand and not judge you.
When I was diagnosed, I was in denial and I didn't want to tell anybody. It's not easy for me to ask for help. So I was acting like, "I can do this, I can do this, I can do this," but you really can't do it by yourself. You need help because nobody should be alone. I know a lot of organizations say that, but it's really true. You really shouldn't be alone or want to be alone because you definitely need a village.
Do not try to do this all by yourself because it's very complicated. It's a lot of information and the same way that you're overwhelmed, your family, your caregivers, even oncologists are overwhelmed. I feel like I'm doing so well because I learned about Living Beyond Breast Cancer three months after I was diagnosed. I didn't know anybody with breast cancer. I didn't have any history in my family. So immediately I'm connected to this community of women who also are going through breast cancer. Having that community to lean on really helped me.
When I was first diagnosed, a colleague that had previously been treated for breast cancer reached out to me. She gave me this two page list of what to eat after chemo and what creams to use, all these things. So then when the next person at work was diagnosed, I called them, right? And so it became this you pay it forward and before you know it, there's 50 women in our club.
No one can give you that advice unless you've been through it. And that was some of the most valuable support that I had. People that I didn't even really know that well.
I was working the whole time and not paying attention to small things but now [I’m] paying attention to everything, [like] being with your family, being on vacations, helping kids with the homework or being outside. More love and everything.
I didn't know if I would see my boys growing up. That wasn't really something I pictured myself being able to do. So we try to celebrate everything in my house, every milestone.
When you're at home just sitting feeling sorry about yourself, you're not going to see the changes. The changes you see when you sit down with another person, another patient, and you talk about it and you open yourself, it's going to make you feel so much better, I guarantee you. It's a relief and the weight off your shoulders, because probably we all have family, but sometimes they're not enough because sometimes they don't understand.
You also need someone that is going to be non-judgmental. People have all the best intentions when you're diagnosed. They really want to help, but all it really does is make us feel bad about our situation. So it's important to have someone that you can really talk to about whatever your side effects are, whatever your challenges are.
I struggled to kind of find someone my age. I'm younger, my career, I feel a little different. I'm gay. All these kind of things that make me an outsider of sorts. And then I'm inducted into a club and it's not a club that you choose, but just remembering that there are people out there that are like you and you're not alone. And really finding that support is so key into your recovery and into the next phases of this.
You feel so loved from everyone. It's amazing. You have the guts to keep it going.
A lot of us already feel guilt and all these other different emotions being diagnosed and having to go through this, so it's nice to have that group of women that you can text at midnight and let them know, "Hey, I can't get out of bed today cause I'm so uncomfortable." Because not everyone can relate to that. It's easy for someone to say, "Get out of bed, be positive. You have a lot to live for. You're so lucky." But you have to believe that yourself and the only way you can do that is by being around like-minded people that can really support you.
Coping & making plans transcript
From when I was, as a newly diagnosed person, walking around in a fog and not really knowing anything about cancer to now, where I feel like there's a chance that I might die with this disease instead of it. There has been a long journey there and I would tell anybody who's newly diagnosed, get as much information as you can. Scans are sometimes the worst because you know that they're going to use that to determine whether or not your medicine is working, whether they need to change it.
You have your scan, everything's good, so you're good for a month and then the month leading up to your scan you start getting anxious. It's just this rollercoaster where you're constantly waiting for the next shoe to drop. Working is how I keep sane. Sitting home and just being depressed probably would make my physical health worse.
Yeah. Depression is something else and it's real. I just didn't feel right for two weeks. What I did was call my social worker and she said, "Yeah, Thomasina, I think you might." "I'm not depressed." Because I also worked on a mental health unit and I seen depression at it's worst, so I'm like, "I'm not depressed." I don't know. Where was I for two weeks? I started talking to a therapist. Took me six months to say you're depressed. You have to reach out to someone. You can't try to say, "Oh, I'm fine." Don't start diagnosis yourself, you have to go and see.
When I was undergoing the heavy duty chemotherapy, I would get very tired. There was always a question, do I want to complete this task and not have it hanging over me or do I want to go home and rest?
I have days where I wake up and I can't get out of bed because I only have but so much energy. There are dishes in my sink that I just couldn't find the strength to face.
I still go for treatment and I have a very demanding job, but I really take time to step back and not do anything on those days.
My cancer's in my bones. I've had radiation on both legs, so now I've had to adjust. I can't go bike riding with my boys because if I fall off the bike, I'm going to break something. I went hiking in a mountain in Colorado. My oncologist is like, "You're crazy." And I said, "But I was fine." I'm not going to stop living my life. I still want to-
I still want to do things.
That's the thing. To live your life.
Because that's the thing. Yeah, exactly. The way I learned to live with this is because I have to live my life. I don't care. I have cancer. Of course, I know I have cancer, but I have to live my life. I have to enjoy my life. My husband sometimes told me like, "Okay, you, you know that you have it. Please stop doing like you don't have it or you don't care about it." But I mentioned to him, like, "I want to think that I don't have it because I'm going to live my life the way I like."
Just dreaming about whatever it is that we want or how we want our life to be gives hope or a pathway to the future.
I love to travel. I have to have a trip planned, and when I was diagnosed with metastatic, I had zero motivation to book anything.
Because I just kept thinking, what if I don't make it-
... to that day? I needed something to look forward to, otherwise I was going to get stuck and just cancer, cancer, cancer. Keep making plans, live like there is no end. And when we get there, we get there.
We live for the moment now. We have a different perspective than other people.
Cancer is clarifying. There is a level of vulnerability there now where it just changes your life. Having those appropriate boundaries and prioritizing ourselves first to make sure that we have that reinforcement around ourselves so that we're not taken advantage of, that we're not susceptible to the negativity.
I have to wake up every morning and choose joy.
I have to choose to be happy and it's not something that happens overnight.
It's a choice. It's a choice.
Why me? Why this? Why now? Why not someone else? These are questions that I'm never going to get the answer to. You just start over. You just keep living. Try to find gratitude in that moment on my worst days.
It just doesn't define me. I am much more than whatever some blood test can say or a piece of paper can say.
It is easy to be angry at this diagnosis. It's easy to be angry at God and for everyone around you, and why did this happen to me? It's a choice to have to make every day to say, you know what? This is my situation. I'm going to make the best of it.