Surviving Stage IV Cancer: The Power of Patient Peer Navigators

Stephanie Sirota: Welcome to The RTW Podcast, where we aim to keep our audience healthy, wealthy, and wise. I'm your host, Stephanie Sirota. Today we're joined by Karen Peterson, the Founder and Chief Patient Advocate of Karen's Club, a New York City nonprofit that supports patients of color considering clinical trials, and a health equity partner of the RTW Foundation. Karen has shared her story with Essence, Health, and People magazines, as well as on The Today Show, and now she counsels patients and families on how to demand the best care. Karen, thank you for being here.

Karen Peterson: Thank you so much for having me, Stephanie.

Diagnosed at 49

Stephanie Sirota: Take us back to when you were first diagnosed at 49. What were you told about your options at that point?

Karen Peterson: I had no idea that there were differences in breast cancer. I thought all breast cancers were the same. Unfortunately, my grandmother passed away from breast cancer really early, at about 44. So I understood you're supposed to get your mammograms and your ultrasounds pretty early. I wasn't shocked when I got the diagnosis. There was the result of triple-negative breast cancer, but then the doctor said to me, "Oh, we have to do some additional tests." And it was just to make sure there was not another subset or classification, like a HER-2. And when it came back negative, I celebrated. I thought it was something great. My little sister Pamela took me to a café, and she broke the news to me. She said, "You don't understand what is happening. You don't have one of the receptors that the majority of breast cancer patients have. That means that your cancer is more aggressive, and it's going to be more difficult to treat." And that was like a gut punch, like, "What do you mean it's going to be more difficult? What do you mean there's, like, only one option?" at the time. And I can remember talking to the surgeon, and I was like, "Well, what about chemotherapy?" And she was like, "We're running a few more tests, dear." Like, in other words, I think she understood that not only was it Stage I, but it was Grade 3. Grade 3 means it is very aggressive, and it's more likely to come back. The cancer cells, they're in Halloween costumes. They don't even look like a normal cell. And when I was told I had to do chemotherapy, it was life-changing.

The vow, and an unannounced visit

Stephanie Sirota: When did clinical trials first enter the conversation for you?

Karen Peterson: I was diagnosed Stage I in 2015. I went through several weeks of chemotherapy, and then I had a voluntary double mastectomy. And in 2016, it was sort of like the reinvention of Karen. Like, let's do holistic, you know, sound baths and acupuncture. And I remember embracing gardening, art therapy, and journaling, and communing, you know, having conversations with other patients and commuting to all the boroughs and talking to the different patients and the different vendors. But something in the back of my head kept saying to me, "Listen, if this goes south, make a vow to yourself." And the vow was never to make an emotional decision. And sure enough, in 2016, I'm closer to the end of the summer. I can remember acting upon that. It was a nag, like, "What would you do?" And the first thing I thought was, "Education." And mind you, I had no diagnosis. I was living my best life that summer. I put on a cute little dress. I put on some lipstick. I had a conversation with a security guard, and he was like, "Sweetie, if you get caught, tell them that it wasn't me." And I went upstairs to see a principal investigator without an appointment. This principal investigator led all of clinical trials and research for this teaching institution. And here I am in my little outfit. I don't know anything about clinical research. I had no appointment. You know, people walking around in covered shoes and lab coats. And they're like, "Who is this woman?" And luckily for me, the principal investigator cleared his desk for me. It was a beautiful sunny day. His office was high in this tower. And he sat me down. He was like, "You have questions. You've come here unannounced, but since you've made it, let's have a conversation." I can remember saying, "Why can't you, you know, solve this thing, triple-negative breast cancer?" And "Why aren't enough Black women participating in your research?" And he looked at me, and he calmly said, "Young lady, where do you think we get our patients? They don't drop from the sky. We get them from oncologists. So if you ever want to participate in clinical research, your gatekeeper is going to be your oncologist." That was the first time I learned about clinical trials.

The clinical trial that saved her life

Stephanie Sirota: So tell us about the trial that you participated in. What ultimately happened to that therapy?

Karen Peterson: I participated in something called the PIVOT-02 trial with two pharmaceutical companies. It was two drugs. One drug would help my fighter cells. My immune system recognized the cancer, but the fighter cells were just around it, not doing anything. They were on a coffee break. They were getting their nails done. They were chatting on their cell phones. One drug, it was an IL-2 inhibitor. And that drug was going to really put my fighter cells on notice. Like, "Hey, you're in Karen's immune system, and you have a job to do." And the other drug was a PD-1 inhibitor. That job for that drug was training my immune system to recognize the cancer and kill it. One drug has been FDA-approved, and I believe, if I'm correct, it's one of the drugs that kept President Jimmy Carter alive. And the other drug was never approved. It never passed the Phase III.

Stephanie Sirota: So you were taking things into your own hands?

Karen Peterson: Most definitely. At the time, in 2017, the life expectancy for someone who's been diagnosed with Stage IV, Grade 3 triple-negative breast cancer was 4%. That means 18 months at best survival.

From patient to advocate

Stephanie Sirota: Ten years later, you're here talking to me. There must have been a moment that you realized that not everyone is getting the same information that you're getting. But I'm also curious, how much of that was driven by your drive to help solve this yourself?

Karen Peterson: My questions and my resilience saved my life, but the ability to articulate this story is what really drove me to become an advocate. People recognizing that ability to take very complex scientific information and hypotheses, and to break it down, because I use crazy little silly little metaphors to break things down. People just started contacting me. And it wasn't always someone from my neighborhood, because remember, you know, traditionally African Americans don't participate in clinical trials. I remember someone contacted me from the NFL Players Association. Or a biotech company would say, "Hey, we saw you on The Today Show, and we know of a family who's interested in having a conversation. Can we put you in touch?" There are always people who are like me who are asking questions. And so that's really what started the whole advocacy journey.

Stephanie Sirota: When you were put in touch with someone from your neighborhood and beyond, what were the questions that they were asking you?

Karen Peterson: A caregiver would ask me a different question than a patient. The patient would ask, "What was it like? What trial were you on specifically? How long did it take you to get on the trial?" You know, "Did you have insurance coverage? Was the staff nice?" More of a sort of environmental landscape. Shout-out to the caregivers, they're very smart. And they wanted to know specifics, like, "What test results did you specifically use in order to get into that trial? What phase is that trial? What company did you use for biomarker testing? What test did you actually have?" On clinicaltrials.gov, they would scan something and print it out, and they would ask me, "Well, what do you think about my loved one's fit for this particular trial?" I'm not a medical professional. But I help patients and families figure out how to use the tools that are available to make an informed decision. We'd sit there with pathology reports, the trial, and the exclusionary criteria, and break it down into increments where they can digest it and help their loved one figure out how they're going to move forward.

Who to tell, who to lean on

Stephanie Sirota: But you personally didn't have an advocate or someone to turn to? So, who did you turn to?

Karen Peterson: It is often hard when you've been diagnosed with an advanced disease. There are perceptions and energy that you often can't absorb. And I can remember telling my sister, "I've been diagnosed, little sis." And she literally collapsed. Oof, I can still see it, and I can remember—I can be emotional about this now—but I was steadfast. You know, I can remember sitting there and looking like, "Pull yourself together, because I have a plan." And she's like, "Okay, big sis says I have to pull myself together." And then I explain the plan to her. And after, like, five times of doing that, I was like, "You can't do this anymore, Karen," because everyone thought, "This is it. She's not going to be able to make it." I said, "I can't tell anybody else," because you need to use your energy to survive. My own mother did not find out that I had Stage IV until the day she got her Essence magazine in the mail. I was like, "Oh my goodness, Essence." My mother has a subscription, so I can remember calling her. She was very, very angry with me. But my siblings, they explained, "This is the reason why she didn't tell you, because you would have been there on top of the doctors and on top of the clinical research team. You would have moved in."

Leaving her oncologist

Stephanie Sirota: Tell me about your relationship with your original oncologist, and have you worked with more than one oncologist?

Karen Peterson: My original oncologist, the relationship ended the day that she gave me the biopsy report that indicated I was Stage IV. I had been meeting with other oncologists, research oncologists, who had indicated to me that, "You're here, and you don't have a diagnosis yet of Stage IV, but you feel like something's wrong." They said, "If you want to make an informed decision moving forward, you need science in order to help you do that. And so I would recommend that you get these tests." Going back to my original oncologist, I wanted to hear what her recommendations were going to be. So, I let it play out, and she was like, "Oh, I recommend A, B, or C." I said, "How about having my tumor sequenced?" And she said, "No."

Stephanie Sirota: Was she surprised by the question?

Karen Peterson: Not until I started asking a few more questions, and then she said to me, "Who have you been talking to?" And I said, "I've been talking to this particular doctor and this particular researcher." She knew who they were. They were renowned in triple-negative breast cancer. Once she realized I'd been talking to other researchers, and she realized that they had indicated that I should use biomarker testing to make decisions, then, you know, her tone of voice and the suggestions changed. And I was just like, wow, you've really revealed yourself here. You were the person I trusted the most. You're the person that took me through a mastectomy, the horrors of all the side effects I went through, the emergency port removal, and you stand here before me, and you're only quantifying the options based on the fact that I had a conversation with someone else that you respect. You're not respecting my voice, but you respect their voice. And at that moment, I just asked for all of my medical records. I was very quiet and very calm. I can remember the room was very cool. It was quiet. You could hear the beeps of the machine. You could hear the other patients upset about whatever was going on with them. And I can remember getting all my information and walking out. And I've never seen my original oncologist again.

Patients who ran out of time

Stephanie Sirota: You said African Americans are not often, you know, participants in clinical trials. What does underrepresentation in clinical trials mean to you? And what does that look like for patients?

Karen Peterson: When I think about underrepresentation, I think about these stories from patients who ran out of time. It looks like a young African American man, maybe 35. He was diagnosed Stage IV. He didn't have a lot of clinical trial information or background. And when they had heard about what happened with me, his loved one contacted me. I've been in those rooms when the doctor says, "I'm sorry, you've been overly treated. I'm sorry, you can't be in the clinical trial, because we don't think you'll be able to survive the 24 weeks that we need, standard, in order to be able to do this." And I can remember, you know, his loved one. And, you know, my doctor was, you know, willing to see this patient off the strength of my recommendation, something that I normally wouldn't do. But they were so desperate, I was like, "Well, you know, have a conversation with him." And they were in a cab, and they were on the way to the hospital, and the patient got really ill. The patient made it to the hospital I was treated at. The patient was admitted. And unfortunately, the patient passed. And that's what I mean, what underrepresentation looks like. Because, you know, had he arrived maybe earlier, there would have been a shot. I had an early patient of Karen's Club. She was a nurse. Her caregiver was a young, fabulous, smart college student. They were West Indian. They were trying to get on this particular trial, and they couldn't. Mom failed, you know, with the exclusionary criteria. And I was there holdin' her hand in 2024, when she was taking her last breath. The family invited me to come there. And I was like, here is another, you know, opportunity that's gone, you know, because of exclusionary criteria, because of comorbidities.

Fear, trust, and the first call

Stephanie Sirota: I'm sure the extraordinary waves of emotions that you must have gone through—what are some of the biggest fears or the misconceptions from the patients that you're helping when you talk to them about a clinical trial?

Karen Peterson: The reservation that a patient will reveal to me is not something they would reveal, oftentimes, to their medical team. You can call me. If [you] want to have a conversation in person, we can do that, but most people take advantage of Zoom. And when I come across the screen, it's like, oh, it's a beautiful way to acknowledge that you don't have to explain your perception to me. Like, I understand, I'm African American. I also understand the perception of, "Is this trustworthy? Am I going to be a guinea pig? Is this going to work? Am I just another body?" Their perceptions and their experience as a whole is important. And then you can talk about clinical trials. Sometimes that's just not the conversation that they can have with a medical professional. But I'm not there to judge. I'm there to help you figure out how to make an informed decision.

Stephanie Sirota: Walk me through how a patient comes to you, and at what point do you start that conversation?

Karen Peterson: Some patients do their research. Some patients look at social media. Some come through a referral. But if you come through a medical professional, it's like, "Why me? Why am I being the one that's been singled out to be a part of a clinical trial?" And that question has to be addressed. I say, "Well, let's look at the facts. Your pathology report, your diagnostic test, your historical medical history, and then let's look at what the trial is offering." Because I often have to tell patients, it is not 1900. No one can walk up to your house and drag you out in the middle of the night and take you to a clinical trial. But I understand your perceptions. I'm not going to minimize that. Skepticism is good. It can keep you alive, being a skeptic, like questioning things.

Why representation shapes the data

Stephanie Sirota: If clinical trials don't reflect the communities we're trying to treat, what does that mean for the quality of data we're relying on? Are researchers truly being able to answer the question of safety and efficacy? Is there a possibility that drugs metabolize differently in the body of an African American person?

Karen Peterson: The majority of patients that are diagnosed with triple-negative breast cancer are Caucasian, but there's a 40% higher chance of an African American woman dying from that. Why is that? We should make sure that there's outreach, that they understand the importance of clinical trials and how this will help them move the system forward and may lengthen their lives. And participating in that, and in a respectful way, and not in a way that is very science-y, because a lot of patients, again, feel like they're just a part of the system. And I've had patients say to me, "Karen, I don't want to be another body. I don't want to be a seat filler." Like, the mistrust. To be able to have those hard conversations and not back away from it is very important. The goal, in a perfect world, is to think that everyone who wants to participate in a clinical trial should be able to. But right now, we aren't in a perfect world.

Proving peer navigation programs work

Stephanie Sirota: You served as a peer navigator in a pilot study with Mount Sinai. What did you learn from that experience?

Karen Peterson: I learned that the hypothesis of patient-led navigation actually works. And that's a beautiful thing. There was data that was collected that made me really smile.

Stephanie Sirota: What does it look like?

Karen Peterson: You know, the data and the perceptions and the information that the patient comes forward with when they first meet with the clinical research team. And then they meet with Karen. What does their understanding of clinical trials look like? And the fact that it improved so much—I think it was, like, 97%. Mount Sinai is actually building their own peer-led navigation model intricacy into their working model.

Working with clinicians

Stephanie Sirota: We talked a lot about the patients and your interactions with them. What about your interaction with clinicians?

Karen Peterson: When I'm presented with an opportunity with a clinician, I take it very seriously. So, whether it's an advisory board, or it's the language that is used when it comes to their marketing campaign—or I had a conversation with a teaching institution in the Midwest, and they were like, "Karen, we really want to have this conversation about the fact that people weren't participating in their support groups." And I was like, "Talk to me about that. What does that look like?" I was able to give them real-world perceptions from patients. Like, "Here are some things that you might want to tweak." So, researchers have allowed me to become more of an architect, especially with patient navigation and that peer navigation model.

How Karen's Club works

Stephanie Sirota: So tell me a little bit about how Karen's Club works.

Karen Peterson: It's really about supporting patients through education. First, we're trying to figure out: Do you understand what is happening? Do you understand the opportunity that has been put in front of you? They all say to me, "Oh, well, yeah, I had a blood test." And it's like, "All right, let's talk about what that means, because there are all kinds of blood tests." Like, did you have a liquid biopsy? Because that's important. That type of blood test will provide a report. That report may help you decide which trial you should be on, or there might be something else that's been FDA-approved that you don't even have to go on a trial for. If you've had genomic testing, the value of that can open doors for you. "Karen, can you help me break down what this genomic report means?" And it's like, "Oh, you have this particular mutation. And guess what? The FDA has approved a drug in that category." So, a patient is empowered. And sometimes it's not even about a trial. They're in a category, and the FDA has approved the drug for this particular mutation.

A patient success story

Stephanie Sirota: Can you walk me through a success story?

Karen Peterson: What comes to mind is a patient in her 70s. Lovely woman, lovely thick New York accent. Her daughter is a caregiver, and she is a lymphoma patient. She was thinking about participating in CAR T-cell. It is a very personalized, expensive treatment. And she was thinking about getting this treatment. It had been offered to her in Georgia. But she couldn't afford to do it. We're not talking about insurance. We're talking about hotel, mortgage, transportation. Socioeconomic factors. Those things. I can remember really being specific and digging around for grants. I got an email as a follow-up, and it says, "Dear Karen, I feel like a rock star. I am now getting CAR T-cell treatment. I am staying in a hotel on the weekends so that I'm close enough to the hospital so they can monitor me if anything goes wrong. I feel like a rock star." She said she had never seen so many medical professionals around her, supporting her, at once. She didn't know how she was going to be able to afford it. And these are working people with houses and mortgages. Your everyday, normal American people trying to access health care. So, shout out to all those organizations that provide grants and all those advocates in the world. You know, I love you guys, because without you, it would make my job very difficult.

The RTW Foundation partnership

Stephanie Sirota: Well, you're one of them. You're a guardian angel to so many. Karen's Club is one of RTW Foundation's 2026 grantee partners. What has this partnership enabled you to do that you wouldn't have been able to do otherwise?

Karen Peterson: Provide patient navigation, at its essence. With the RTW grant, it was wonderful to meet the patients where they were. So, having the funds to be able to get swag to present at the community fairs, or go to a senator's office, or go to a partnering organization and have those conversations, and then trust me with their pipeline of community members. And the fact that RTW is behind me lends credibility. And the fact that, you know, they believe in Karen's Club. RTW is providing me with a reminder, like, "Yeah, what you do is very important." You're out there in the community, and you're meeting with patients who aren't necessarily coming through a doctor's referral. It makes me feel like the fight that I fought to stay alive was all worth it, and there was a reason why it all worked out. And I'm paying it forward, and RTW has allowed me and supported me in doing that at a very grassroots level.

What decision makers should know

Stephanie Sirota: Well, having lived through this firsthand, what do you wish decision makers in health care and research better understand about patient-led and peer-led navigation?

Karen Peterson: We're not trying to replace them. The first thing I tell researchers is, I am not a medical expert. But I have lived experience. With change, there is some resistance. All we need to do is help and support the patients and make an informed decision. That's the key. And the fact that patients feel I'm a trusted source.

Stephanie Sirota: Karen, thank you so much for sharing your story. When patients are equipped to advocate for themselves, the whole system works better, and we'll get better outcomes. Best wishes as you continue with Karen's Club.

Karen Peterson: I appreciate that.

Outro

Credits:

This interview was given by Karen Peterson, Founder and Chief Patient Advocate of Karen's Club, a 2025 grantee partner of the RTW Foundation, and moderated by Stephanie Sirota, Partner and Chief Business Officer at RTW Investments. Statements reflect RTW's views and opinions as of the date hereof and not as of any future date. All expressions of opinion are subject to change without notice and are not intended to be a forecast of future events or results. The views expressed by guests are their own, and their appearance on the program does not imply an endorsement of them or any entity they represent.