MBC Insiders: MBC Awareness Day and More
Live from Stage 4 | Episode # 4 | 10/13/2025 | MBC Insiders
Guest
MBC Insiders Panel
Martha Carlson -- diagnosed de novo in December of 2014, a writer and advocate who mentors, contributes to research and publications, and works to improve understanding of the MBC patient experience.
Melanie Sisk -- diagnosed with early breast cancer at 43 and later, metastatic at 47, which ended her nursing career, she channels urgency into advocacy.
Lynda Weatherby -- living with MBC since 2013 after 2001 DCIS, a Seattle-based patient advocate and advocate founder of “The Project to End Postpartum Breast Cancer."
Ellen Landsberger, MD -- a retired OB/GYN from New York has lived with metastatic breast cancer for years, but it was the loss of a close friend to the disease that sparked her interest in using her voice to help educate others.
Jill Tirabassi, MD -- researcher and advocate, and another physician on our team, diagnosed with breast cancer during her second pregnancy at the age of 36, she now works part-time while raising her two young sons with her husband outside of Buffalo, New York.
Alexis Desai -- born and raised New Yorker, and former educator, diagnosed with MBC at the age of 37, actively involved with Metavivor and is a recent graduate of NBCC Project Lead.
Judy Perkins -- cancer Immunotherapy pioneer, who is the first person to be very likely cured of metastatic breast cancer through a form of immunotherapy known as tumor infiltrating lymphocytes or TILs.
Listen to full episode :
Quick Summary
In this special panel episode, host Victoria gathers a remarkable group of voices from the metastatic breast cancer (MBC) community to mark National Metastatic Breast Cancer Day. Together, they dive deep into the language and labels that shape their experiences—debating words like “journey,” “chronic,” “cure,” and “survivor”—and share how these terms can both empower and frustrate those living with MBC.
The conversation is candid, heartfelt, and at times, challenging, as panelists reflect on their own diagnoses, the emotional rollercoaster of progression, and the realities of living with a terminal illness. They discuss the importance of community, the need for more research and awareness, and offer practical advice for those newly diagnosed.
Whether you’re living with MBC, supporting someone who is, or seeking to better understand the realities behind the pink ribbons, this episode offers honest insights, solidarity, and hope from those who know the landscape best.
Takeaways
Language Matters: Words like “journey,” “chronic,” “cure,” and “survivor” can be empowering or triggering for people living with metastatic breast cancer (MBC). The panel discusses the importance of using language that accurately reflects their experiences.
Diverse Experiences: MBC is not a one-size-fits-all diagnosis. Each person’s experience with the disease, treatment, and emotional journey is unique, and labels often fail to capture this complexity.
Progression is Challenging: The fear and reality of disease progression is a major emotional hurdle. Panelists share how they cope with progression and the importance of perseverance and support.
Community and Connection: Finding support—whether through local groups, online communities, or peer connections—is vital for emotional well-being and navigating the challenges of MBC.
Advocacy and Awareness: There is a need for greater awareness, research funding, and accurate representation of metastatic breast cancer, especially during awareness campaigns like Pinktober.
Advice for the Newly Diagnosed: Seek care at comprehensive cancer centers, don’t be afraid to get second opinions, and take time to process emotions. It’s important to be an informed patient and to build a trusted care team.
Living with Uncertainty: Accepting the uncertainty of MBC is difficult but necessary. Panelists encourage focusing on the present, finding small joys, and not letting fear dominate daily life.
Honoring Those Lost: Remembering and saying the names of those who have died from MBC is a powerful way to honor their legacy and keep the urgency for research and support alive.
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[00:03:21] Martha.
Victoria: Welcome everyone. I'm so glad to see, 1, 2, 3, about eight of us here. The other day I was thinking about this panel, but I was also thinking about our podcast and what occurs to me, and I hope you agree with me, that one thing that makes this podcast different from many other podcasts is that so many of us have been on this journey for a number of years, or just diagnosed recently.
And this is the strength of this podcast.
And so let's start with a ice breaker,
and I think that's an important one actually. The word journey How do you feel about it? It seems that everybody's on a journey these days, not just Judy who actually finished a real journey a couple of weeks ago. Everybody else is on a journey, weight loss journey, putting on a sock journey.
Everybody's on a [00:04:21] journey, but the most common journey seems to be cancer journey. And I don't know how you feel about it, and I would love your opinion on this. I detest the word, it triggers me every time. It trivializes our cancer, it's such a cliche, but I would love to hear what you say. What other words trigger you? Chronic maybe, anyway, what's your opinion?
Victoria:
Martha.
Martha: sometimes hearing the word journey bothers me. I think it's more just like how intensely that word is used in October and leading up to October. It makes me a little bit nuts. And I realize when I'm responding that way, that I am being kind of irrational about it, you know, and emotional, i would never use the word journey to describe my own experience, just because it's just not a word that appeals to me.
I don't think it's necessarily appropriate as a description. But I would say, if I had to choose between the two [00:05:21] words you've mentioned, chronic bothers me a little bit more, actually a lot more this morning I sat next to a woman with Stage 4 cancer who was very nice, very wonderful.
And she was talking about how she thinks of Stage 4 breast cancer as chronic. and I didn't react in any kind of out of control way, but I did talk about all the people I know who the experience is not that of chronic disease, at all. It's a little hard to talk about those things with people who use those words to help themselves feel better, So I try to be mindful of that as much as I can.
I'll jump in
on that.
Victoria:Lynda's jumping in.
Martha, thank you for transitioning us to chronic, because yeah, i think what bothers me particularly about that is when clinicians use the word [00:06:21] chronic, you can't really help what's out there in the ether with the public, but when clinicians and then maybe the breast cancer organizations use the word chronic, i really bristle because to me there's two camps here in MBC.
There are, and I'm generalizing, but there are patients who respond to treatment and do really well for a really long time. And then there are patients who are living more of an acute experience. Chronic and acute are the opposite.
I don't know what else to use here. But there are patients going through a very acute experience, maybe their entire diagnosis and it's so vastly different. They always say about breast cancer that it's really like 30 different diseases or something. And this gets to that point.
It is so vastly different for the patients who are living one versus the other. And I hope our podcast can be a place where we really address that. I would urge any [00:07:21] clinician listening to stop using the word chronic because we need a different word. Chronic, really trivializes, like you said, journey does chronic really trivializes it to me.
Judy: I would agree. Journey sounds like a fun thing. who doesn't wanna go on a journey?
and chronic just sounds like this. Trivialized, minimalized, oh, you have this minor little ache and pain. You should just take an aspirin and call me in the morning, Both those words are horrible.
Alexis.
Alexis:Lynda, i really appreciated, how you just spoke about that, the terms chronic and some of us being more in acute care. Where that word lies is so different for many people. And I never realized that as I thought it was something positive that clinicians were using more so to, make us feel better or themselves feel better.
But I wonder what the perfect word is, [00:08:21] to explain this process, because journey, that word itself doesn't necessarily upset me or trigger me, nor did chronic. But again, i'm in a different position right now with my disease. And I don't know if over time as things evolve, those words will have different meaning for me.
Victoria: I'm Melanie Sisk. I've been living with MBC for five years now. Thank you for having me on here, Victoria. Yeah. Just to chime in, i don't really mind the word journey. To me, it just seems like part of my life and when I talk about doing fun things, i often call that trips. So the fun stuff for me, i refer to as trips.
Melanie: I'm going on a trip, we're gonna do something fun. And then journeys just, almost like a chapter in your book. Sometimes I call it my cancer chapter, which might be a long chapter, but it's part of it. So I use Journey I use chapter, and just like with everyone else, chronic really gripes my hin in.
And I know that as a Southern saying, but it does. [00:09:21] And when I hear that, even with people that have metastatic breast cancer, i have to give my opinion. That's one thing. I can't sit back and be quiet because I'm like, you know what? We can call it chronic when every subtype can live 20 years with a good quality of life,
and if I ever hear a clinician call Metastatic breast cancer chronic there’s no telling what I'm gonna say to them because this is not chronic. This is not diabetes, this is not high blood pressure. The medications that we take and the side effects and the life, it's not the same. And I don't think it should be called chronic at all.
This is not chronic. This is terminal. Yes. Some of us are living longer, but I have a lot of friends who have not lived as long as I have,
Bravo.
I'll tell you what I'm sorry to jump in again. I am triggered right now. I think maybe this is something we can do, in our podcast is lead the charge on [00:10:21] changing this, provide some different framework to think about this. Because when people are talking about it as a chronic disease, and certainly we might be there with HER2, i don't know, maybe we're there, but we're dismantling our own efforts to call for research and to call for support.
And to call for attention. Maybe the intentions are good, For a provider to wanna comfort a patient who is newly diagnosed, i get that, but in the end, it's doing more harm than good. I think.
Victoria: Then, another word that's been around lately, “cure.” Lynda just mentioned HER2.
that sometimes triggers me because HER2 is not good cancer. It is better cancer than the other subtypes may be at this point, but it's still not good. Cure is very far away for people living with some, [00:11:21] variations of HER2 positive cancer. So what do you think about the word cure?
Ellen, what do you think?
Ellen: I think it's horrible, it's a lofty goal. I wish, and I think when each of us heard about somebody and then discussions about cure, we all wanna be there. I wanna be there, i don't wanna have this anymore, but since I first heard the concept that metastatic disease might be cured, i cannot tell you how many people we have heard who have had progression or have died.
people who have been NED, no evidence of disease for 10 years, and then it happened. So I'm done with this concept of cure. you have to prove it to me, in many ways before I'm gonna go back to that concept.
Alexis: Good thing we have Judy here.
Judy: That's true. I just think when you [00:12:21] have one out of a thousand
that's not a cure you can rely on just having some crazy, unrepeatable event. that's not a cure anybody can count on. That's just a random act until it's repeatable, until it'sCuring some percentage. That's more than 1%. Even the exceptional responders, the HER2s.
There are some that have lived a long time, tends to be in the HER2 world, but it's still, each of us is our own unique experiment in this cancer world. And there's a few people who are out on the right hand side of that bell curve that ride that wave for a long time. Yeah, but we're the weirdos who show up at S-A-B-C-S over and over again.
Why we don't wanna be there. We don't wanna keep being patients. We just feel like this need to give back to the next wave. The people who are on the front lines, the people who are still in the trenches. Now [00:13:21] we're back behind the front lines and we can try to impart some of the things we learned from when we were there, but it's just a different game.
, Everybody I started with, i was Stage 4 in 2013. All the people in my discussion group are dead. Every single one of the people that I met and went to conferences with, they're dead, Even the Ann Losers, even the Zi, even those, they've all died.
Judy: There's just this weird dozen people. you Victoria, it's Lisa Shepherd. They're the weird little rock stars. We're just such anomalies.
Ellen: . There's always extremes and unusual, exceptional cases, that doesn't mean, it's cure.
Not that we're not thrilled for Judy 'cause we are, and it's aspirational for many people, but the treatment itself is not accessible for very many people.
I wanna say I retract what I said about the HER2.
Victoria: Oh, no, Lynda. [00:14:21]Lynda. This is one of the myths, yeah, and obviously, you know exactly what it is, and I made
my own point, right?
Victoria: It's not. Yeah, i'm an administrator in an MBC HER2 group and Martha is a member there, and we see it over and over again. People are asking, why am I progressing? It seems to be the good cancer. How come I've only been able to be on this treatment for a year and now I'm progressing?
I think it makes it even worse for people, with HER2 positive disease, because there is this, feeling that they would do okay. And they are told that, oh, you have the good one, you'll be okay. But lemme tell you, my doctor, my amazing, wonderful oncologist who retired, a few years ago when I asked him when Perjeta, had been approved and Herceptin had been approved and things were looking so much better for people with HER2 positive breast cancer when I was diagnosed metastatic.
He said to me after I asked him, would [00:15:21] it be better for me to be HER2 positive or HER2 negative? He said, without even blinking twice, he said, no, HER2 negative, it's just one of those hopeful thoughts that we'll hear, but it upsets me every time, my doctor says to me, oh, you cured, i'm not cured.
I'm sure I'm not cured, and please don't tell me that because it doesn't help.
So let's talk about something that we have just touched upon, the Big P word and before we get into the serious part of it, Abigail, who is not here unfortunately,
she said to me, you know what we should do at the beginning of every show, we should say, remember the Sesame Street thing? And today's episode is brought to you by the letter P. So today's episode is brought to us by the letter P, and let's talk about that letter progression.
Lynda, i think you'd be a good person to start.
[00:16:21] Oh, goodness. I was making a joke when I first said that, of course, people will get the nuance, i think of, current world issues with the letter P. I guess I'm living somewhere in the middle here where, i have had fairly long responses to my first treatment.
six years and then 4 years. And so that's long. And that's good, but it's not good enough. And I just have to say that my frame of references, 180 degrees different, whether, those tumor markers are coming back stable or whether they're coming back increasing, is this a G-rated podcast?
Victoria's? No,
Victoria: it's not. This is for adults only. And I specifically specific say on YouTube, not for children. So, not at all. It can't be G-rated when we talking about metastatic breast cancer. Come on.
Yeah. Yeah. The mind fuckery of dealing with progression is not talked about enough, i guess.
And it [00:17:21] is so hard. It is so hard. And we all know that, there's only a certain number of treatments. So what progression is — is going how far down the line am I? And i just wonder how other people who've been through progression deal with it sometimes it can go on very long, before you land on something that's working.
I just wonder how other people deal with it when they've been in it.
Victoria: Jill, would
Jill: you like to weigh in on this? I'm trying to compose myself a little bit, to be honest. The p for progression, i'm gonna flip it and also say perseverance. I've been through a lot of progression. I've been through a lot of treatments now not the longest amount of time and it's soul crushing.
You guys are all talking about chronic and coming from the medical background, i actually look forward to the day where I could be considered chronic, honestly. And I mean that because I think of myself as very acute, very rapid [00:18:21] change, so it's actually like a, it's actually like a gold star to me.
Like, one day I could be chronic.
it's really challenging and there's no way around it. And I basically live day to day in those, early couple weeks of dealing with it and figuring out a new plan, and reaching out for advice from different sources. And then once I kind of get through that initial gut punch, that initial
stomach pain, that whole revisiting of a very acute grief all over again. I reflect on what I can still do and how I'm so lucky that I'm still able to do the things I do, and I move forward. And I don't think I have a magic answer for anyone, but it's really coming around to finding the small joys again that remind us of how great our life is in the world is, even if everything else kinda seems terrible,
and I'm still here and I'm still okay and i'm talking and I just, i find a way forward. It's pretty much as simple as I can say [00:19:21] it.
Victoria: Yeah. Judy, how about you? Among all of us, you've been basically to the very end. You have run out of options and then there was this magical cure. But along the way, how did you deal with this?
Judy: I started right out of the gate with Abraxane. 'cause I had a really big tumor under my sternum and my local oncologist thought that was the way to go. So I was on that for about six months when that stopped working. And then I got myself to University of Miami in the breast cancer center.
They're like, why are you on Abraxane? But anyway, he said, look, basically the way this works is you have your first treatment and then every treatment after that works for less time. And that pretty much was exactly what happened to me. I had a little tumor that I could feel and I always knew if things were working or not.
I had things work for two weeks. I could feel in seven to 10 days I could [00:20:21] feel that tumor get slightly softer or maybe pressing my nerve less. And then I'd feel it grow back. I had treatments that worked for a couple of months. I had treatments that worked for a couple of weeks. I had treatments that didn't work at all, and I went through about a dozen treatments.
I got on another clinical trial, there was a clinical trial for anbEFGFR1 inhibitor called Lucin that basically washed out because of all the side effects. And that one actually worked for me, made my tumor completely disappear. But then all my platelets disappeared too. So I had to come off a treatment that was working because the side effects were too much, and that was just soul crushing.
Right after that trial was when I went to Project LEAD and that's when I heard about the TIL trial. But it took them 4 months to expand my TIL, and while that was happening, i was on Afinitor, which also didn't work, and that's when it expanded to my liver.
So by the [00:21:21] time I got up there, they had said I had maybe a 12% chance of it working. I was really, just going up there to try to do some good for the next generation. I couldn't walk around the block anymore. It hurt, it was pressing on my nerves, like I had a lot of nerve pain and then it was all through my liver.
I wasn't having any symptoms from that yet, but I was really just giving my money away. I'll tell you, that was the last thing for me to let go of. That's a sign for me anyway. I had given up on hope
I started to be curious about death itself, like how awake and aware am I gonna be? I'm always concerned about pain, do not want pain. But I was, starting to have those existential spiritual, like what is death gonna be like? I was determined to try and show my kids, this is just a part of life and I was gonna do my best to try and do it with some grace. [00:22:21] And show my kids that even this is okay.
Victoria: Yeah. So what do you think we, as the community can do to help people deal with this based on our experience? What is the best advice we can give somebody who will hear those words?
I mean, most of us at some point will, you have progression?
Judy: I just think it's such a personal thing,
Yeah.
Victoria: Absolutely, i used to say, and I don't know if that's helpful or not. And this was not something I came up with, i interviewed one of the oncologists years ago and she said something that actually made a difference for me. She said that if it hadn't been for breast cancer and the hope that the next treatment would work, that there is that magic bullet somewhere in the future
I would've [00:23:21] given up a long time ago. She said that to me and I thought, well, that seems like a good advice to give somebody.
Melanie: Yeah. And Victoria, i would like to, just add, i've only been living with this for five years, so I've only experienced one progression so far. And the first progression for me went from bone only disease to visceral disease. And so that in itself was like really hard and jarring. And being, it was my first progression.
It almost felt like being diagnosed all over again to me. I really took it hard. And I always like to try to stay ahead of the game. You know, me and my oncologist talk about okay, what's gonna be next? What's gonna be next? And we kind of talk about it, but we know the science is changing so rapidly.
That's a discussion again that we'll have at progression. So for me, that was really, really hard.
I knew that shoe was gonna drop, i just didn't know when. We all know it's gonna come. I [00:24:21] try to stay positive, but I know it's coming. I hope for the best, but I prepare for the worst. So it was tough. I'm stilll right now waiting for that second shoe to drop.
When is my second line of therapy going to stop working? 'cause I know at some point it will. So I think anticipating I, but not dwelling on it is a good thing. Like just be prepared and be educated and know what your next options are. So when the progression does come, you kind of have a little bit of a plan in place, and then you can really sit down with your oncologist and look at the science today.
What's been proven today? We have new drugs approved every so often, and we just had one the other day. So to me that gives me hope that there is research going on that is gonna approve some drugs that hopefully I will have the chance of being able to use at some point and hopefully I can get a little time out of it.
That's kind of how I try to look at it.
Victoria: So we have another 20 minutes and we are here for a [00:25:21] specific reason, right? We are going to publish this episode on October 13th, which is the National Metastatic Breast Cancer Day.
Let's talk about it. What does this day mean to you, if anything?
Melanie: For me, metastatic Breast Cancer Awareness Day is our day to make some noise. That's how I look at it. I do participate in different fundraisers like Metavivor Light Up MBC. I have a local support group in my area. We have a fun project planned that day. We're all gonna get together and we're gonna paint on a canvas, the MBC ribbon, and then whatever else we want on it.
We're gonna spend time together as a group, and it's gonna be in the intimate setting. So to me, that's a day for us to celebrate life with each other, the life that we do have, even though MBC's part of it. And that really sucks and we hate that part of it. Stilll, that has brought us together as friends. And we draw [00:26:21] so much strength from each other in the peer group.
So that's the way I look at MBC Day. It's our day to make some noise, bring awareness about metastatic breast cancer and how we need more funding. We need more research, Stage 4 needs more. And so I don't celebrate the day as in celebrating, oh, i have MBC, that's that one. It's about it's celebrating that
I have life today. Let's get some awareness for this disease. We need a cure.
Victoria: Right. So it sounds to me like what you're saying, and I love what you just said, that it helps you feel more connected with our community.
Alexis: Melanie, i completely agree with you and I love how you said all of that.
Um, i agree a hundred percent. It's a day that the world gets to pause for us and not celebrate ribbons or colors, but really the realities that we face, on a daily basis from our scans all the way to the side effects, to the resilience that we innately, build within ourselves and the uncertainty of living with [00:27:21] this disease.
So, it's a mirror moment for us, a chance to honor everything we've been through as well and celebrate with our people.
I wish it was longer than a day. I wish that breast Cancer awareness month would be a lot more metastatic-tilted, a day is not enough.
Alexis: You should, split, the month of October half are metastatic disease and the other half are, earlier Stages.
Victoria: Yeah. Yeah. So, Lynda, when I asked everyone to submit questions or topics that we should discuss today, you wrote something that, i'm just gonna read because it was such a powerful message and I want to share it with people.
You said to me, how do we convey the urgency of MBC when there are so many patients and advocates living with long periods of stability and NED and NEAD? it's a good [00:28:21] thing, but how do we ensure that people know the challenge of MBC? And not think, hey, it's just a chronic disease.
Yeah. I think, our job as advocates, is to convey that it's not enough. And I have gotten into some, real back and forths with some of the, breast cancer organizations, about that, there's no room for complacency here. And i guess I'm just gonna challenge our group and what we do to really lay on the urgency And not be focused on, look how much we've accomplished. Yes. We have 17 drugs in the last decade, i think is the number that I read recently. and that's basically since I've been diagnosed, that's phenomenal.
But. we're not anywhere near where we should be. And I read a number from Metavivor recently. You know, the number of dollars of, research going to metastatic is still like $11 out of every hundred for breast cancer. Research [00:29:21] is going to metastatic. So we just need to keep on the message of urgency.
Victoria: seriously. when I heard the news about Imlinestrant being approved and years ago, Stephanie Graff said to me, and I hope you guys remember that, she said, every pharma should have an oral SERD. It's like having one of those doodle dogs. Everybody should have one. And it's true. So now it's int then there will be camizestrant.
And do we really need to spend billions of dollars on doing the trials for another oral SERD?
If you can stack them, that's great, if there's something different that allows you to move, maybe from ribociclib to Abemaciclib, if they each offer something different, that's one thing.
But if it's the same over and over and over again, then no.
Martha: You guys, i'm gonna go back just super fast to the October 13th, please.
Victoria: I was gonna go to you next, i'm so [00:30:21] glad you spoke up
Martha: We are in sync.
I do a lot of stuff in October, in fact, i did something on Saturday, so including September.
I don't care if it doesn't fall on October 13th, that is where my focus is. But I will say this, and some of you know these people, my two local friends who both lived a long time with MBC and have died, relatively recently, were involved with the Metastatic Breast Cancer Network.
One of them, Shirley Mertz, was instrumental in getting that October 13th day. And I think this is something that matters. So I have a lot of sadness around specifically the 13th because I think of Shirley and I think of Catherine. But despite that, i recognize this incredible thing that they did for the metastatic breast cancer community.
[00:31:21] And it's up to us to make it bigger and make it change things.
Victoria: What do you think as a podcast, podcast with the most amazing group of people, this team is unbelievable. What can we do to help - spread the word, maybe what's your opinion?
Martha: Be loud.
Lynda: Everything, everything, anything, every day.
Alexis: I think also, reaching out to our representatives and educating them and really diving deep to see if they, co-sponsored, funding metastatic breast cancer research, because I think we would all be a little surprised at the numbers and the people and the representatives, whether they be Democratic or Republicans, where their interests are, politically and where metastatic breast cancer falls on that line.
I've been shocked every year. but [00:32:21] I'll be at the stampede with Metavivor in October, so that's something, people could do, get involved and start there.
Melanie: And even within your local community. My local community has a conference every year called Pink Ribbon Talks, and it's for survivors. And so it's all pink. Everything's pink. And so since I started working with the nonprofit, there's been more awareness to metastatic disease. And so I go there, i sit on the survivor panel as the metastatic patient, and I bring awareness to metastatic disease that, Hey, we're here.
Everything's not all pink. there are those of us who are living with Stage 4. We have our own ribbon. So I proudly educate people on what our ribbon is, what the colors mean, that we are here, how many of us die every day from this disease, and why we need more research. Because if we can cure.
Stage 4 breast cancer, then [00:33:21] nobody else ever has to worry about dying from breast cancer. Right. So to me it's all about making noise. And as far as the people before us, we just can't stop saying their names. I think there's so much power in saying the names of the people that we've lost this year.
'cause all of us have, even in my local group, we have lost people this year. So yeah, we're not chronic, we're not living 20 years with this. These are people just like me who didn't even get the time that I've gotten. So I think it's so important to say the names of the ones that we have lost and not stop saying their names.
'cause it's so powerful.
Alexis: I was a little thrown off at my oncologist's office because it was all pink, in the waiting area. So I shared with the front desk, i said, do you know metastatic breast cancer has, the green and the teal and the pink, those are our colors and we have a day, a special day within the month.
And they were unaware at the front desk working at a breast oncology office, [00:34:21] that treats women with metastatic disease. So I started there. Sometimes it's those small wins, right? That's really gonna make change somewhere. Start somewhere.
.
Victoria: Yeah.I guess the last thing we should talk about is
another word, so we'll end with that, How do you like the word survivor?
.
Victoria: And which word, should we use instead of that? I don't like “survivor’ I'm faced with that every time I do a voiceover or ask a question, i don't like the word thriver either. So which word would I use?
Judy: I like
Judy: the word veteran. Veteran. I like that.
Melanie: I like the word lifer
Melanie: because
Melanie: I feel like this is a life sentence. Some days I'm thriving, i'm feeling great. Some days I'm barely surviving, but I know I'm not gonna survive this. So I hate survivor, but yeah, lifer's my word. I even have a bracelet that says lifer, but everybody is different.
So we have [00:35:21] to be careful about putting labels on other people 'cause that doesn't resonate with them. So it's really individual.
Ellen: When I think of Survivor, i think it implies a cure too, it's kind of a misnomer, but for people with early Stage who think that they're one and done, as we know that there's like 30% of people from early Stage are gonna go on and get metastatic disease.
Ellen: So, survivor doesn't fit Thriver. The first time I heard that, i'm like, what are you talking about? I feel like shit, Like, so, that never fit. I just described that I've been living with cancer for over 30 years now, and I live at different stages of cancer.
I've had different kinds of cancer, i've had different kinds of treatments. I've had multiple cancers. At one point I did use the word warrior because I felt like I was in the fight. But now I don't fight with anything. I'm just living with it. I treat it. I deal with all [00:36:21] the words. but that's how I describe myself as a person who's living with cancer.
And in terms of the phrase pink-tober, i will tell you that I, have referred to October for the past almost 30 years as breast cancer exploitation months because I've never seen anything as commercialized as breast cancer, you can spend more money and buy a pink car and you can spend more money and buy a bra with a ribbon on it.
And I don't understand how, um, that helps us. I hate the month of October. I have always said that I think women are quite aware of their breasts and don't need to be reminded that we have them. and it's about cancer. And so that's what I have to say about all that.
Victoria: Melanie, actually just put in the chat that we should think before we think.
Exactly. So that's a good slogan. I love it.
Ellen: that's been a [00:37:21] slogan of mine for a long time. There have been organizations call that, people who call themselves that, that's their handle. and think before you pink is a very, prominent, important phrase because it's just a lot of nonsense.
Victoria: All right, so let's end this. And this has been such an amazing discussion, and we could go on and on and on, but I'm trying to make sure that we keep within the one hour frame. So last question I have for you guys, so I'm sure, and I hope, actually I'm not sure, i hope that there will be listeners out there who were newly diagnosed, who just starting out on this path to either chronic disease or a cure at some point, and we all hope they will live a long life
but what advice would you give them? Just one advice that you have learned that you wish somebody else would've told you when you [00:38:21] first started out?
Judy: So I would say get yourself to a comprehensive cancer center. Don't be afraid to get a second opinion. Maybe after your first or second line treatment, start thinking about clinical trials.
I mean, you can even look at that at the beginning. And if you're at a comprehensive cancer center, hopefully they're starting to do that. In my opinion, being an educated patient and being part of the decision making process is the way to go. But some people like to stick their heads in the sand. So that's my advice.
Melanie: That is great advice. Judy. One thing I will say that kind of plays more to the emotional aspect is you're not gonna die tomorrow. I think when I was first diagnosed, i thought I was gonna die like the very next day or the next week or, immediate death was coming to me, and that's not the case.
So that's one piece of advice that I can give them. Your life is not over yet.
Judy: I would also give [00:39:21] one more piece of advice, if you find yourself really stuck in the shock and awe phase for too long, go get some medication. 'cause you don't wanna waste your time really being stuck in depression and because yeah, you're not, gonna die tomorrow.
You've probably got years and you don't wanna waste too much of that time stirred up in your own emotions. You've got people around you, many of us have families and kids and other people and you can't be dragging them down with you.
Alexis: I would say you need to take time to grieve your own mortality when you're initially diagnosed.
You have to go through those emotions. To heal and learn how to live with the disease. And I think sometimes people might just ignore it or put it in a box and pretend it's not there, like it's gonna go away. But you have to face those, emotions, head on in order to move on [00:40:21] and learn how to live with this.
And then everything else everyone said I agree with.
Ellen: Well, i think the things that Judy and Alexis and Melanie, have said are really important critical things. the things that I'm gonna just add, are less, but have helped me, One is to acknowledge that it is an emotional rollercoaster, and to give myself, some space on that, that it's okay to be down.
, i just try not to dwell on it, as has been stated, if you need help get help, there's a lot of help and there's medications that help and there are people who can help you. The other thing is, i think that by and large people mean well, and they say stupid things because out of ignorance, not because they don't care about you.
And so. I've worked hard at trying not to get annoyed when people say the stupid things. and just saying thank you and moving on from that. and i have had periods of time where I've, stewed in that stuff [00:41:21] for too long. I too thought I was gonna die.
not tomorrow, but I thought I was gonna die within two years. I thought I had two years left. AndI told everybody and when I realized that I was wrong, that I had a lot more time. then I regretted all these people knowing, my business. So I had to deal with people saying things that really were not particularly relevant, but everybody meant well.
Victoria: Jill, how about you?
Jill: Yeah, i think those are all right. I've talked to so many people living with MBC, who, i could tell lack trust in their provider and you need to have a team surrounding you, not only oncologists, it could be therapists.
I have a exercise specialist, i have a massage therapist, palliative care. assemble a team of people around you that, you have trust in . Definitely have your intentions and like it takes time and years. I would say maybe to really get that going, and get that going, quickly.
And I think the other pieces is all of our [00:42:21] experiences with this disease are going to be different. And so you gotta get off the comparison train. learn about Your tumor markers, learn about anything and everything about your disease that can help you and help your team.
And eventually you're gonna become the specialist of your disease, compared to what your oncologist sees in everyone else. And that is a helpful thing, knowing, what drugs have been used with these particular markers, what trials are running. you have to become empowered to some degree to lead the charge because it's your life ultimately.
You're the one who's gonna care about the most. so just keep moving forward
Victoria: beautifully put thank you so much.
Martha: I do kind of feel like everybody has said things that I 100% agree with and appreciate how well it was said. most of all, from Judy to be educated, and Jill and probably everyone else who's spoken, it's critical because it helps you move forward actually, and it helps you understand so much more and it helps you with your emotions too for most of us.
one thing, specifically [00:43:21] that helped me at one point was I was seeing a therapist and I was going through an exceptionally rough period, and she asked me, and I knew I was spiraling downward, like I was not finding a way out of this. And she asked me, what have you done in the past?
what has made you happy? If you've experienced anything like this in the past, what has helped you? And that one question really opened my eyes to the fact that I had the power to try to make myself get out of this, that I could look at what had made me happy and try it and see if that worked, And as a matter of fact, it did. That helped to just have that acknowledgement that you can do things for yourself too.
I think for me, echoing everything that's been said, well, well put, i would say for me, the biggest factor has been finding other people going through it.[00:44:21]
And i know this is not easy for everybody, but if you can find local, groups like Melanie was talking about having a local group. if you can find MBC groups in your area or on Facebook, there's a ton of Facebook groups. there's support groups being run by different organizations. I think Metavivor is a great resource.
Ellen: I would really urge people to connect in because if you're the only person you know, going through it, it makes a really tough situation even harder, i'm not sure if it was said, it was a corollary to what Judy said, earlier about if you go start finding yourself, going through lines of treatment and looking at clinical trials, also not being afraid to, besides getting a second opinion of actually switching.
Switching, doctors that, that sometimes your original person may not be the right fit. It's hard to leave your doctor, And you're not gonna offend the person. It doesn't matter if you do. Um, i think you need to do what's really best for yourself and take advantage of [00:45:21] that opportunity.
And there may be a better fit for you.
Victoria:, i want to say at the end that, i really think that we accomplished exactly what I was hoping we would, given what we know and how much we'll have been through. I think this is such an incredibly important resource . And I hope many, many people will listen to us and those who listen to us, i hope will share this.
Episode with their friends and go back and listen to it again and again and again. And i'm completely blown away by you people and I'm so grateful that you are here with me and that we are doing, i think, really something important for our community.
I want to thank you again for being here and uh, i can't wait to put this out and I can't wait for people to listen to it.
Thank you so [00:46:21] much.
.
Resources Mentioned
#LightUpMBC 2025
A fundraising and awareness campaign that organizes events to "light up" landmarks in the colors of metastatic breast cancer awareness. Click here for detailsMetastatic Breast Cancer Network
An advocacy and support organization for people living with metastatic breast cancer. Noted for helping establish National Metastatic Breast Cancer Day (October 13th). Click here to learn more.Pink Ribbon Talks
A local conference for breast cancer survivors, mentioned as a place where metastatic awareness is being increased.Metavivor
Referenced as a great resource for support groups and advocacy, especially for connecting with others and participating in events like the "stampede" in October. Link to the website is here.Facebook Groups
Online support groups for people living with metastatic breast cancer, offering peer support and community.Comprehensive Cancer Centers
Recommended as the best place for treatment, second opinions, and access to clinical trials.Dana-Farber Cancer Institute
Mentioned as a site for clinical trials and advanced treatment options.NBCC Project Lead
A program or event referenced in the context of clinical trial education and patient advocacy.National Metastatic Breast Cancer Day (October 13th)
A day dedicated to raising awareness and making noise for the metastatic breast cancer community. Click here to learn more.Local Support Groups
Encouraged as a way to find community and support, with examples given from panelists’ own experiences.
