Metastatic Breast Cancer and Thriving with Lindsay Clark
Episode Summary
Lindsay Clark was 33 years old with no family history of cancer when she felt a lump in her breast in September 2019. Within two weeks, her nipple had inverted, prompting her OB to send her directly for a mammogram. The speed of what followed was staggering: biopsies on Tuesday, a HER2-positive diagnosis on Thursday, a breast MRI on Friday, a PET scan on Monday, and her first chemotherapy infusion within a week and a day of that initial mammogram appointment. She was diagnosed stage 4 from the outset, with metastases already present in her bones and liver.
Her initial treatment plan — a double mastectomy followed by a defined course of chemotherapy — was immediately set aside once the metastatic diagnosis was confirmed. As Lindsay explains, surgery is deprioritized in de novo metastatic breast cancer because the focus shifts to protecting organs and bones rather than removing the primary tumor. She went through six rounds of Taxol, Carboplatin, Herceptin, and Perjeta, achieved remission, and was placed on maintenance Herceptin and Perjeta — only to fail that regimen within her first three months. The cancer had also spread to her brain, requiring Cyber Knife stereotactic radiosurgery and a full change in treatment protocol. Since May 2020, she has remained on the same chemotherapy regimen, a stability she describes as a genuine blessing in the metastatic breast cancer world.
Six and a half years into her diagnosis, Lindsay’s life is structured around ongoing treatment: intravenous infusions every three weeks, an oral chemotherapy taken every other week, and a daily inhibitor. She has experienced ten brain metastases, all treated with radiation, and undergoes brain imaging every two months. When her cancer returned in her breast tissue for a third time last summer, she traveled to Memorial Sloan Kettering in New York for cryoablation — a procedure not available in Oklahoma — rather than accept a double mastectomy without reconstruction. She also maintains a separate oncology team in Texas. On the day this episode was recorded, she had just come from a PET scan, illustrating the degree to which medical management is woven into the fabric of her daily life.
A cornerstone of Lindsay’s journey has been Project 31, a breast cancer support organization she first encountered at the Proton Center on the very day she received her metastatic diagnosis. What began as walking into an in-person meeting as a frightened stranger became a lifeline. She now co-facilitates the organization’s Thrivers Group — a stage 4-specific cohort that meets virtually every Tuesday at 6:30 p.m. and connects women across the state through an active group chat. The group organized a retreat at Carlton Landing where five women who had been strangers left as sisters. When their group leader, Amanda King, passed away in September of last year, the call following her death drew every member of the Thriver group — a gathering Lindsay describes as a collective act of grief and gratitude.
Throughout this episode, Lindsay returns repeatedly to the theme of self-advocacy. She recounts calling drug representatives directly to access a newly approved chemotherapy that had just come out of clinical trials, becoming the first patient in Oklahoma to receive it and now the longest-running patient on it. She describes fighting her insurance company — which initially denied coverage for her first brain radiation on the grounds that cancer was present throughout her body — by personally calling the insurer and enlisting letters from her employer and her personal trainer to prove she was a “full-fledged human.” Her message to anyone newly diagnosed with metastatic breast cancer is direct: give yourself grace, allow yourself to grieve, and then fight for every option available to you.
What You’ll Learn in This Episode
- De Novo Metastatic Diagnosis: Lindsay was diagnosed stage 4 at initial presentation — meaning the cancer had already spread to bones and liver before she ever had a mammogram — which immediately changed the treatment approach away from surgery.
- HER2-Positive Breast Cancer: Her tumor type, HER2-positive, guided her initial regimen of Taxol, Carboplatin, Herceptin, and Perjeta, and continues to shape every subsequent treatment decision.
- Surgery Deprioritized in Metastatic Disease: Unlike early-stage breast cancer, metastatic breast cancer at diagnosis typically means no immediate mastectomy or lumpectomy, because systemic organ preservation takes precedence over removing the primary tumor.
- Cyber Knife Radiosurgery: When cancer spread to her brain within her first three months, Lindsay underwent Cyber Knife — a non-invasive, highly precise form of stereotactic radiation — which she has now needed for ten separate brain metastases over six years.
- Cryoablation for Recurrent Breast Lesions: When cancer returned in her breast tissue for a third time, Lindsay traveled to Memorial Sloan Kettering in New York for cryoablation, a minimally invasive freeze-based treatment unavailable in Oklahoma, rather than undergo a mastectomy without reconstruction.
- Insurance Advocacy and Denial Appeals: Lindsay’s first brain radiation was initially denied by her insurer on the grounds that cancer was throughout her body. She appealed personally, gathering letters from her employer and personal trainer, demonstrating the critical role of aggressive self-advocacy in accessing care.
- The Thrivers Group at Project 31: Project 31’s stage 4-specific support group meets virtually every Tuesday at 6:30 p.m. and is open to any woman with metastatic breast cancer, reachable through the organization’s Facebook page. It offers peer connection, shared information about treatments, and a community built around thriving rather than surviving.
- Choosing the Word “Thriver”: Because metastatic breast cancer is never fully cured, the group deliberately chose “thriver” over “survivor” — signaling that even amid ongoing treatment, scans, and uncertainty, they are fully alive and engaged in their lives.
- Parenting Through Terminal Illness: Lindsay’s advice for mothers with metastatic cancer is to be honest with children in age-appropriate ways, hold onto hope, and answer hard questions like “Are you going to die?” with truthful but reassuring framing — “Not today, babe. That’s not the plan.”
- First Patient in Oklahoma on a Post-Trial Drug: The chemotherapy regimen she has been on since May 2020 had just emerged from clinical trials when she started it. She contacted drug representatives directly to secure access, and has been the longest-running patient on that drug in the state.
- Grief Within a Stage 4 Support Community: Lindsay addresses the reality that in a group where every member has terminal cancer, loss is inevitable. When founder Amanda King died in September 2024, the Thriver group responded by drawing closer — the memorial call drew the largest attendance in the group’s history.
- Be Your Own Advocate: The single piece of advice Lindsay wishes she had received at diagnosis — and now gives every woman she meets — is to research aggressively, seek second and third opinions, pursue treatment options outside your local area, and never accept a “no” without pushing back.
Lindsay Clark’s story is a six-and-a-half-year testament to what becomes possible when a person refuses to accept the limits placed on them — by a diagnosis, by a geography, by an insurance adjuster, or by fear. She found her lump, she pushed for answers, she sought cryoablation in New York when Oklahoma said mastectomy, she called the drug reps when she needed a drug no one in her state had tried, and she looked an insurer in the eye and asked, “Do you have a heart?” Every Tuesday at 6:30 she shows up for a room full of women walking the same road, keeping alive the legacy of Amanda King and the community she built. If you or someone you love is navigating metastatic breast cancer, Lindsay’s invitation is simple: reach out through Project 31’s Facebook page, show up to a call, and let a group of women who get it remind you that you are not alone.
Full Transcript
Read Full Transcript
David Raubach: Thank you for joining us on today’s episode of the Cancer Project podcast. We’re really privileged to be joined today by Lindsay Clark. Lindsay is a breast cancer thriver and we’re going to talk about what that means with her. She was diagnosed with breast cancer on September 12th, 2019, and has been dealing with metastatic breast cancer since then. We’re going to hear her story and just how she’s been encouraging other women going through something similar as part of her ministry and her way of giving back. So Lindsay, thank you so much for joining us today.
Lindsay Clark: Thank you for having me.
David Raubach: So talk a little bit about just that moment in time back in 2019. I know you were young, and it was obviously a shock at that time. Just kind of walk us through.
Lindsay Clark: Yeah. So I was 33, no family history of any kind of cancer at all, especially breast cancer. I was working out seven days a week. I had an eight-year-old son and I felt a lump in my breast and within two weeks my nipple had turned in. I thought — Google is your best friend at that moment — and I said to myself, this is not right. I called my OB and she sent me directly to get a mammogram, and within a week and a day I was having chemo. I was diagnosed stage 4. It had spread in a very short amount of time throughout my bones and my liver, and it was a whirlwind. I went through six rounds of Taxol, Carbo, Herceptin, and Perjeta.
Lindsay Clark: I came out in remission and was supposed to stay on just Herceptin and Perjeta for life, and within my first three months I had failed that. And then it had spread to my brain. So I had Cyber Knife and changed treatment, and I have been on the same treatment since May of 2020, which is a blessing in the world of metastatic breast cancer.
David Raubach: So going back to when you went to go meet with the doctor — for those that haven’t gone through what you went through with finding a lump and then going in — kind of walk step by step through what that process was like, and then that moment where you were told you had breast cancer.
Lindsay Clark: Yeah. So it was a Monday morning. I went in for a mammogram. Obviously, at 33, I had never had a mammogram before. They handed me a gown and I put it on backwards because I had never experienced it. And then they said, “Well, let’s go do an ultrasound,” and I thought, “Well, that’s probably normal.” And then the radiologist came in and said, “Can you be here tomorrow at 7 a.m.? When was the last time you took Advil? We’re going to need to do some biopsies.”
Lindsay Clark: So I had four biopsies that next morning. And then I looked at my nurse as I was sitting there and I said, “Should I be worried?” And she said, “Yes, you should.” The radiologist said, “I’m 99.9% sure you have breast cancer.” And yeah, my world was rocked. I went out into the parking lot and my mom and my spouse were with me and I just broke down in tears. And then I said, “I’m going to continue on” — like until I know for certain I’ve just got to go back to work and go back to being a mother.
Lindsay Clark: Two days later they called with my results and they said, “Who would you like to be your oncologist?” And I was like — do I know an oncologist? So they helped me get in with my colonel oncologist that afternoon, and the next morning I had a breast MRI and then a PET scan, and we were off to the races. It was just a whirlwind.
David Raubach: So you mentioned that your cancer was metastatic. At what point did you figure out that it had spread beyond the breast?
Lindsay Clark: Sure. So I found out that I was HER2-positive on that Thursday, then I had a breast MRI Friday, then I went in for a PET scan Monday. And Tuesday when I got a call that said, “Can you come into my office this afternoon?” — I pretty much knew that was not a good sign. And in hindsight, I was working out a lot and I thought I was just injured. I had been seeing a physical therapist, trying to work out my hip, and my shoulder had like cupping because I had frozen shoulder — and it turns out it was cancer.
David Raubach: When did you kind of figure out what the treatment process was going to look like? Because they asked you if you had an oncologist and you said you didn’t exactly keep one on hand.
Lindsay Clark: So when I initially saw my oncologist and she set up all these appointments, we were going to treat it. We didn’t know it was metastatic at that time. We were going to go meet with a surgeon, have a double mastectomy, have this treatment plan. And then it was quickly thwarted because when you do have metastatic breast cancer at diagnosis, you don’t have surgery. You don’t have an immediate double mastectomy or a lumpectomy because you’re trying to save your organs and your bones. So I didn’t have surgery right away. I did later have a lumpectomy when it came back, but it’s treated totally differently.
David Raubach: And so that’s why you just went straight into chemo.
Lindsay Clark: Yes. And what’s going through my head at that point — I always say that my primary job is to stay alive. My secondary job is to be a mother and a spouse. And then from there, how many other jobs do we have? A million. But I just kept being like, I have to just keep going. I can’t let this impact me. I need this for my son. I just have to put one foot in front of the other. Not saying that there aren’t dark days and tears. But I always tell myself I allow myself a day to grieve and then I’ve got to put on my boots and buckle up.
David Raubach: What was it like talking to your son initially? How did you approach having that conversation?
Lindsay Clark: Yeah, so that was a very hard conversation. We still have this conversation obviously because I’m not out of the woods in any sense. He’s 14 now, so it’s a little easier. But I did have to sit him down. And I told him the truth. Although he likely didn’t understand it all, I think it was important for him to know that I was going to do everything I could to be here with him and raise him, but that there’s a chance I have terminal cancer — and that I won’t always be here, but that he would always be taken care of.
David Raubach: One of the things that you’ve done is talk to other women that are going through a similar diagnosis. Some of them have kids. What advice have you given to those moms about how to deal with the day-to-day?
Lindsay Clark: I think just being honest and treating them — you don’t have to give details that are unnecessary or that they wouldn’t understand, but just being honest about your situation and being hopeful. He sometimes asks me, “Mom, are you going to die?” And I’ll say, “Not today, babe. That’s not the plan.” Nobody knows God’s plan, but that’s not the plan today. Just keep hope. And keep honesty because we are all on borrowed time.
David Raubach: So that’s about six and a half years ago now. Talk about maybe just the last couple of years — what has happened with you from a diagnosis standpoint and the treatments you’ve been pursuing?
Lindsay Clark: Yeah, so I still undergo intravenous treatment every three weeks. I take an oral chemo every other week and an inhibitor every day. I have had ten metastases in my brain — radiated — and we continue to test for that every two months. I’ve had cryoablation in my breast tissue when it came back a third time, and that was just last summer. Today I had a PET scan. I mean, it is a daily experience. Some days I feel fine and some days I have a side effect from necrosis from radiation in my brain that causes me to go on steroids. Sometimes I say my day is not my own. You never know what it’s going to hold, but I’m grateful for every day that I have.
David Raubach: We had a lady graduate from the Proton Center who had tallied up the number of times she had walked into a clinic over the last twelve months and it was over a hundred times. I can’t even imagine over six and a half years.
Lindsay Clark: I say that I collect doctors. [laughs] And I love every one of them and I’m grateful for them, but sometimes I’m like, I really don’t want to see you. Like when you go visit your radiology team and they’re like, “It’s so good to see you!” — I’m like, “It’s great to see you too, in this circumstance.”
David Raubach: So talk about getting involved with Project 31. How did you become aware of that organization, and for the benefit of people listening, describe what Project 31 is as a charity and how you initially got involved.
Lindsay Clark: So Project 31 was introduced to me when I was diagnosed, at the Breast Network. The first class I went to was actually at the Proton Center — and it was the day that I found out I was metastatic and I was a mess. Honestly, I didn’t know what I was walking into. It was an in-person meeting because it was 2019. And I walked in and I just felt so at peace. I was surrounded and I was given hope by so many women who were in my same shoes — some had been at it for a year or two — and they said, “We’ve got you. You’ve got this.” Just hearing that I wasn’t in the trenches by myself.
Lindsay Clark: I have been blessed to be able to help other women walking the same journey in the same way. We have a Thrivers Group now that is for all of our stage 4 friends. We meet online because we are throughout the state, and we check on each other like sisters. We have a group chat where we share updates on life. I have a call with one of them later about her new treatment that she’s about to start. It’s a sisterhood I didn’t know I needed — but I need.
David Raubach: You’ve described it as “Thrivers” and I introduced you as a breast cancer thriver. Why is that word used? Why is it important?
Lindsay Clark: We kind of went back and forth. In the metastatic breast cancer world, it’s different — we don’t ever get to live without it. So we wanted to think of ourselves as still thriving, still living, still robust in our lives. Thriving sounded like the best way to describe our group.
David Raubach: It’s almost like a mission statement — that regardless of the circumstances, the number of doctor’s visits, the chemo, or the surgeries, we’re going to choose to thrive, and we’re going to choose to thrive with each other.
Lindsay Clark: Yes. We had a retreat that Project 31 put together for us in Carlton Landing. There were five of us who spent a weekend together. We were strangers. We came out as sisters. We were able to laugh, cry, hold each other. Unfortunately, we lost our leader who actually started the group — Amanda King — in September of last year. And we were able to grieve together and be there for each other. We still see each other and talk to each other almost daily. And that is invaluable to all of us.
David Raubach: I think you’ve brought up something that is kind of a difficult topic, which is if you’re part of a group like that where everyone has stage four cancer, the reality is there’s going to be ongoing sadness. How do you handle that or process that? When you lost Amanda last year —
Lindsay Clark: It was gut-wrenching. We were really all lost together — and it happened so fast. And yet I think we clung to each other tighter. We’ve lost some others along the way and it hurts each time. But through faith that we’ll get to see them again one day, and that they’re at peace and not hurting. And I think it’s important for us to hold each other in those times of sadness. That call — the first call after her passing — we had the most attendees. We usually have ten maybe, and I think we had everyone who is part of the Thriver group. To lift each other up and talk about how wonderful she was and how grateful we were that she started our Thriver’s Group. And how fortunate we are to have been blessed by her.
David Raubach: Maybe just practically — if somebody is going through metastatic breast cancer and wants to get involved with that group, how would they go about doing that?
Lindsay Clark: Reach out on the Facebook page. There’s a questionnaire, and then we can put you into it, and just join the call. It’s at 6:30 on a Tuesday evening. It’s just refreshing. Everybody will welcome you with open arms. I was sitting in treatment just last week across from a woman who is metastatic, and I said, “Here’s my card — please get on. I hope to see you soon.” It’s a welcoming group and we have speakers sometimes, or sometimes we just sit there and chat about things that only we can chat about.
David Raubach: One of the things that Project 31 does such a good job of is creating a safe space to have really tough conversations. There’s no topic that’s off limits — whether it’s sexual issues, relational issues, spiritual issues, family issues — whatever it is, the whole point is to just get it out there and have these conversations.
Lindsay Clark: Yes. Because you may think you’re the only one going through it when really we’re all going through it. Whether that’s a partner relationship, your children, trying to navigate insurance, trying to keep your schedule, or maybe you didn’t get to start a family before and that’s heavy on your heart — we’re all there for you. It’s a safe space to share that and to be vulnerable, because we are all there to support you.
David Raubach: What do you wish you had known six and a half years ago that you know now?
Lindsay Clark: The best advice I was given when I was diagnosed was: be your own advocate. Fight for what you need. I research, I don’t give up, I don’t take the easy option. I’ve had cryoablation for metastases in my breast — I had to go to Sloan Kettering in New York. I have a team there, I have a team in Texas. If I had just stayed here, I would have had to have a double mastectomy with no reconstruction, and that was not something I wanted. So I researched other things. I was my own advocate.
Lindsay Clark: My oncologist has been wonderful in supporting my, as she might call it, crazy decisions — like saying I’m going to New York for surgery. And she was like, “Yeah, I think you should do it.” And in Project 31 as a whole, everyone is very encouraging to seek other options and not just go along with whatever is here in this city. Same with fighting for insurance. I’ve had to call — my first brain radiation was denied. They said she’s not eligible because it’s throughout her body. And I was stunned. I had to get my work to send a letter, I had to get my trainer to send a letter to say that I’m a full-fledged human. I had to call them myself. I have at times said to an insurance person: “So you just think it’s okay for me to die?”
David Raubach: What an amazing story of hope and perseverance. You’ve been dealing with metastatic breast cancer for six and a half years and you’re still here and you’re still working and thriving.
Lindsay Clark: Yes. And the chemo I was put on — that I’ve been on for almost six years — it had just come out of trials. I’m the first person in Oklahoma on it, the longest person, and I had to call drug reps and say, “Help me get this.” I don’t think you’re supposed to do that, but I was fortunate enough to have some connections. But I was fighting for it. I think that’s the most important thing in this whole battle — you have to just push and advocate.
David Raubach: What do you think your son would say about his mom going through this process?
Lindsay Clark: Oh gosh. He’s a 14-year-old boy. [laughs] But he is the sweetest. I think he’s proud of me. I don’t think he goes a day without telling me how much he loves me, which I hope never stops. That’s beautiful. He’s a great kid. I think he would say I’m tough.
David Raubach: Yeah. Well, you are. So just to close out — what would be your message to somebody who’s where you were at September 12th, 2019?
Lindsay Clark: I would say — give yourself grace. You can grieve. You can cry and be mad. But you’ve got a lot of life to live. So just give yourself time and you can do it. You can stay alive. Stay on the positive.
David Raubach: Thank you so much, Lindsay. That’s a beautiful way to close things out and I really appreciate you being willing to be so transparent and share your story. I think it means so much to other women that are going through something similar. You’re obviously doing that with the support group, and thank you for coming on here today.
Lindsay Clark: Thank you for having me.
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