Surviving and Thriving: Janice's Metastatic Triple Negative Breast Cancer Story

The Patient from Hell (00:01.166)
Hi everyone, this is Samira Daswani, the host of the podcast, The Patient From Hell. I have one of my favorite people in this entire world with us today, Janice Cowden. Thank you for playing with us.

Janice Cowden (00:14.798)
Thank you for having me, it's such an honor.

The Patient from Hell (00:18.222)
Wow, you always make me feel so nice. Janice, I think you have to stop. I think I'm just gonna be laughing on this episode, guys. I'm just gonna, farewell, honey, to all listeners. Janice, should we start with your story? Because your story is just one of the most remarkable ones I've heard in a long time, so.

Janice Cowden (00:22.638)
It's true.

Janice Cowden (00:37.902)
It is very different and I wish it was a more common story. So I was diagnosed early stage with triple negative breast cancer in 2011. So almost 13 years ago. And then five years after my early stage diagnosis, I was diagnosed with stage four metastatic triple negative breast cancer, which is kind of unusual in and of itself.

most of the time if triple negative is going to reoccur, usually happens within the first two to three years. So because I never do anything according to rules and by the book, I had to be different. And my oncologist and I, it was at a routine appointment and we were sort of in that celebration mode of, hey, we got to five years. Whereas with other types of breast cancer, like hormone positive or HER2 positive,

After five years, that risk of recurrence really doesn't go down. It either kind of stays steady or might even rise over time. With hormone positive, you could have a metastatic recurrence 10, 20, 30 years afterwards. The risk actually starts going down with triple negatives. So those who are early stage triple negative get to that five year mark and you're like, woo hoo, made it. And that's sort of how my oncologist approach did. But I was having some...

bone pain and joint pain that was more than just the typical arthritic type pains. And I had done my research, surprise, surprise, prior to the appointment. And I had started a bone strengthening agent, Prolia, about a year before that appointment. And I read that one of the most common side effects was significant bone and joint pain. And I thought, well, that's it. So my intention at that appointment...

The Patient from Hell (02:14.158)
huh.

Janice Cowden (02:32.782)
at that appointment was to tell him, hey, I don't want to take this drug anymore because it's practically disabling me. I mean, getting in and out of a car was painful. Everything I did was painful. I couldn't walk without limping. And so, thankfully he was very proactive. And he said, do you know what? He goes, you're at five years. I really don't expect anything, but let's just do a PET scan to make sure.

and mentioned that, you know, he just wanted to rule out that he didn't have bone metastasis from triple negative. So I go into the PET scan, reassured that, hey, this is probably nothing because I'm five years out and he was in a celebratory mood and so was I. So it was quite a shock when he called me a few days later and said, I need you to come in so we can discuss the results of your PET scan. And so...

At that appointment, my husband and I went in, sitting there. He pulls, you know, he sits down on his little stool in the exam room, comes up knee to knee to me, takes my hands. He has tears in his eyes and he said, I'm so sorry, but you have a recurrence of your breast cancer. I'm fairly certain. It looks like you have stage four metastatic breast cancer. We're going to do a biopsy of a subpectoral node just to confirm that that's what it is. But

He said I'm fairly certain according to the the PET scan results. So did the biopsy and Sure enough, you know, it was confirmed that it was stage four triple negative So here's where the real uniqueness of my story comes in We talked about treatment options and at the time there was no targeted therapy for triple negative breast cancer so it was which chemotherapy do you want to use and He decided because I was

Even though we didn't call it that at the time, and this is something that I learned after, you know, a couple of years after my diagnosis, I was really what's called oligometastatic breast cancer, which means I had very limited metastases. Ended up having like four lymph nodes. One of them was a distant on the opposite side of my original breast cancer, which is what actually made me stage four. And so I had very low burden of disease, but he said, I want to treat this aggressively.

Janice Cowden (04:57.934)
We're going to do Adriamycin Cytoxin chemotherapy. We'll do a scan after four rounds and we'll see where we're at. And so as much of a shock to both of us when I had that PET scan done in November of 2016, there was no evidence of disease. So we originally talked about following the AC, you know, we were either going to do four rounds or six rounds of AC chemo and following that with

The Patient from Hell (05:18.254)
What?

Janice Cowden (05:27.118)
Carboplatin and he said I really don't want to put you on Carboplatin at this time because I don't see anything to treat and that made me feel wildly uncomfortable without a safety net thinking he's just not going to treat me so we're just going to sit around and wait for this disease to rear its ugly head again and so we talked a little bit more I had a consult with my radiation oncologist and we decided to do radiation.

So I had 15 rounds of radiation about a month and a half later. And then we scanned again a month after I completed radiation, still no evidence of disease. So of course, again, didn't want to put me on chemotherapy when there was no evidence of disease to treat. So we said, let's just, let's just scan you every two to three months. So that first year was incredibly stressful.

talk about, you know, scanxiety and it was like just waiting for the shoe to drop because triple negative is such an aggressive subtype of breast cancer that I don't think neither he or I were expecting me to continue having no evidence of disease. We're just sort of waiting for it to return and then make the decision. What do we try next? So that first year scans every two to three months. They were all

NED, which is no evidence of disease.

And then I am now at eight years this month out from my metastatic triple negative diagnosis.

Janice Cowden (07:09.422)
you know, for a disease, and I don't believe that we are statistics or that we should really follow the statistical averages for things, but they're there. So the median overall survival for metastatic triple negative is still not beyond two years really at this point in time. So to be eight years out and to still have no evidence of disease, yeah, it's very different. That makes my story very, very different.

There are others I know who are in that same category, but not very many. In fact, my, my, I got second opinion. I got four second opinions because I wasn't, I wasn't comfortable with the idea of just waiting for my disease to progress and not do anything about it. So, you know, I went to all of, to four different NCI designated cancer centers and got second opinions. I'm an overachiever like that.

And I loved the oncologist, my husband and I both loved the oncologist that I saw in D Anderson. So we stuck with her. And she's always sort of told me you're in about a one to 2 % category of those with metastatic breast cancer. So it really is unusual.

The Patient from Hell (08:09.678)
Not too bad.

Janice Cowden (08:33.741)
It's not that it can't ever happen. We don't use the word cured. We don't use the word remission. We just say that I have continued no evidence of disease. It would probably be unusual at this point in time for to have progression. But I do know others who have had progression with the exact same subtype of my disease more than 10 years out. So we never say never.

We just sort of, but I have spread my scans out. My scans are now almost a year apart, which is nice. So yeah, that's basically my story.

The Patient from Hell (09:17.134)
Janice, you know the irony is I know you, I know your story and I think I have 15 questions!

Janice Cowden (09:25.582)
away. I will try my best to answer.

The Patient from Hell (09:30.702)
Can we go all the way back up? I'm gonna go all the way back up, okay? 2011, you got diagnosed, always CHDNBC. What are you doing outside of like life as a patient?

Janice Cowden (09:36.27)
Mm -hmm.

Janice Cowden (09:44.558)
since 2011 or what was I doing outside of? well.

The Patient from Hell (09:47.598)
doing that? Like, where were you born? What, like, who was Janice before cancer hits?

Janice Cowden (09:57.07)
I've been a lot of things. I wear a lot of different hats. But originally, my career was as a nurse. Never worked in oncology. I always primarily worked in pediatrics for the majority of my career and not in pediatric oncology. So I had zero oncology experience. And so once I retired from that, I did work as a pharmaceutical sales rep.

for a few years, just to kind of see if I liked that. That was, you know, I loved our pharmaceutical reps when I worked the last part of my career. I actually worked in a private practice for a pediatrician. And it was wonderful because, you know, it was just getting to see the same people over and over again, unlike working in a hospital where

patients come and they go and you don't really get to establish relationships. I worked at this practice for 13 years and it was wonderful. He decided the only reason I retired is he decided to go back into ER medicine. So he closed his practice and so we had a decision to make, you know, did we want to look for work elsewhere? That's when I went into pharmaceutical sales. I had interviewed for a position and

I didn't really think I would get it because I had no background in that. And so I was shocked when I got it, pleasantly surprised and I enjoyed it. Mine was a part -time position. So I worked about 24 hours a week. I, I enjoyed it. Not as much as being a nurse, but, you know, it's, it's, it's very different being on one side of that gate versus dealing with the gatekeepers when you are, you know,

a drug rap because they generally don't like you and they get tired of seeing drug reps come in their office multiple times per day. So I can understand that having been on the other side of that gate. But it was interesting. So, and I did, you know, dabbled in other things, but then I decided to go back to school because I love learning. So I thought, well, I think I'll go back to school. So I took

Janice Cowden (12:21.518)
some classes at community college. I did some classes at University of Dayton when we were still living in Ohio. And then we moved to Florida in 2006. And I decided that I would go to University of Central Florida in Orlando, UCF. So I got a degree in interdisciplinary studies, which I'd never heard of before. It was fun.

The Patient from Hell (12:46.51)
What were we studying? What were the disciplines?

Janice Cowden (12:49.838)
The disciplines were, well, health sciences. So I wanted something that would be easy. That one came easy. Health sciences. You know, I had to, my goal was to get out with a 4 .0 GPA. So I had to do at least one thing that was easy. So it was communication and health sciences and sociology.

Yes, so it's kind of like having, how old was I? I was, let me think here. I was 48 when I took my first community college class. Now we moved in the interim. And when I started out, I just started with one class because I didn't even know if my brain would be able to absorb and retain. So anyway, so I did very well.

with my one class, then I bumped it up to two classes and three, you know, and so on and so forth. So over the years, and then we moved in the meantime. So I actually went full time for a little over a year to get my degree at UCF. And it was a little stressful, you know, doing 12 to 15 credit hours, but it was fun too, because I was competing with myself to, you know, get that.

perfect GPA. I said I'm crazy.

The Patient from Hell (14:21.102)
I love it! It's just so... It's very refreshing.

Janice Cowden (14:26.382)
Yeah, so I was 52 when I graduated with my degree in interdisciplinary studies. Yeah.

The Patient from Hell (14:35.662)
I'm gonna have her send this episode to my mom. No, I'm serious. I am completely serious. She has been talking about going back to school for a very long time and she's always been very nervous about it. And you know, it's, I think it takes a special type of courage to do that. And you know, I'm going for it.

Janice Cowden (14:53.966)
It does. No, it really does. To be a non -traditional student sitting in a classroom full of 18 to 20 somethings, you know, it took me a while to get over that. The community college was a little different because there were more people my age. But when I went to classes at like University of Dayton and UCF, I was really the only old person in those classes.

And what I learned was you just sit in the front of the classroom because none of the kids want to sit up front. And they're sitting there, you know, clicking on their phones and doing things, which was distracting for me. And the older you get, the less you are capable of multitasking. I have found, or at least me. And so it was, it was distracting for me. And I was afraid I was going to make me, you know, mess up my, my perfect GPA. So I just sat in the front of the classroom.

in every class and then I didn't have to worry about it and it took copious notes, which none of them were doing, but I didn't have to see what everybody else was doing. And so it made me feel more comfortable. And after a couple of years of that, you know, you get, you get used to it and you no longer think about being a non -traditional student. You don't really care anymore, but I, I'm glad I did it. You know, when I first started doing it, our daughter was in college.

at the time and our son was in high school. And so by the time he got into college and our daughter graduated, I was like, that was really fun. Cause I would hear about all the things they were doing in college. And I thought, I don't need that college campus experience again. I just need the learning experience again. And I appreciated it so much more as an older adult than I did when I was younger. You know, when you're younger.

there are other reasons to go to college than just getting your education.

The Patient from Hell (16:50.798)
into a note that's all I did in school. I don't know what to talk about.

Janice Cowden (16:57.518)
everybody but there were for me. So anyway so that's what I was doing and actually when I was diagnosed early stage in 2011 it was a really odd time because my husband he had always said he was going to retire at 55 that's what he did so he retired we sold our house bought another house and I was diagnosed with stage 1 breast cancer within a three week time frame and that was based on my

routine annual mammogram and I had found a lump a few months before that mammogram, it was tiny and no history of breast cancer in my family. So I didn't think too much about it and I'd always had dense breasts and calcifications and all of that. So I just thought, you know, it's just one of those things. But yeah, that was a very busy time. So we got ourselves moved out of the house we sold and into the house we bought and I started treatment.

And so that's what we did for our first six months of retirement was surgery, treatment, doctor appointments. Sure not what my husband was thinking of when, you know, when he said, Hey, you know, I'm going to retire.

The Patient from Hell (18:03.534)
Great, super fun.

The Patient from Hell (18:14.03)
You know, I didn't know that about you. Our stories in that respect are actually very similar. I got diagnosed Jan 2020, so not for diamond, sorry. No, no, I'm not there. Kind of far from that right now. But my then boyfriend and I had just moved in together. And we were living in San Francisco. I had gotten a new job.

Janice Cowden (18:19.278)
Really?

Janice Cowden (18:26.446)
you

The Patient from Hell (18:35.758)
We were going to move from San Francisco to Redwood City. So we had this like, not closing a house, opening a house, but like, yeah, still moving. Moving in for the first time together. New job, moving in, got diagnosed all in the span of like 10 days. And I remember, like, you know, the formal diagnosis comes, you do the biopsy, the path comes out, the doc's talking to you about the treatment plan. And it was the last, it was like Friday.

Janice Cowden (18:45.102)
Mmm.

The Patient from Hell (19:03.214)
we got the like final final like you know you will have chemo kind of news and Saturday we were we had movers coming and we were like you know what let's go out for a celebratory drink and a drink and a dinner. I was like celebratory sure you know not entirely sure about that but let's go let's go out for dinner. So I remember going to this big dinner spot and well fainted a couple times

Janice Cowden (19:18.094)
What are we celebrating?

Hahaha!

The Patient from Hell (19:33.23)
And I remember, so my like, he's my boyfriend that I'm with together a year and a half and he's like, holding me up trying to get a cab and the cab like sees me having like fainted thinking that like, you know, it's a young person who's fainted at a bar, like not what was happening. It was, you know, medical stuff. But the driver just drives off, like kind of like, I'm not dealing with these two people. And I just remember like, in my head, I was like, I am yelling, like, I have cancer.

Janice Cowden (19:47.886)
We

The Patient from Hell (20:02.03)
And apparently I didn't yell, apparently I just like mouthed it out so only my boyfriend, now husband, heard it. And he just looks at me and he goes, huh, that was the first time you acknowledged it. And I was like, great, required me to face a cab driver to drive off, not want to deal with me, I guess, to actually say those words out loud. And it was just, yeah, and then we moved. And then my parents showed up.

Janice Cowden (20:30.062)
Yeah.

The Patient from Hell (20:31.342)
And moving with us because you know without them I wouldn't have survived but you know my parents moved in with us and we had just moved in together. So it was not exactly...

Janice Cowden (20:38.862)
Now that's, yeah, that can be a very trying start to a new relationship. Yes, you did, congratulations.

The Patient from Hell (20:47.022)
We made it! We're married! Thank you. Thank you. We got through one chapter.

Janice Cowden (20:55.342)
Absolutely. So that's where I was at my original diagnosis.

The Patient from Hell (20:59.31)
No.

The Patient from Hell (21:03.502)
Okay, I have more questions for you. So you're a nurse, well, back then you were a nurse. But you clearly know a lot about oncology. How did you get here? How did you learn? How did you understand all these terms that you may or may not have been familiar with? How do you keep updated with the phenomenal progress we're making in oncology? Like, how have you done that?

Janice Cowden (21:31.086)
You know, it is a steep turning curve. And I did a lot of research when I was early stage, but I wasn't connected in the breast cancer community. Like I wasn't in any support groups. I didn't connect with anybody on social media. You know, I just sort of went on my own, did my own thing, researched, you know, cause I knew how to research. So I basically did that.

The Patient from Hell (21:49.262)
you

Janice Cowden (21:59.63)
on my own and when I was diagnosed metastatic, I look back now and I think, how did I not read the statistical average that up to 30% of those diagnosed with early stage breast cancer will have a metastatic recurrence? I didn't know that. And that's not something that oncologists as a rule talk to patients about. It could be that they don't want to incite fear, but in my opinion,

That is a knowledge gap that we really need to know. I know there are some patients that don't want to know. People have all different desires on how much and what it is they want to know. But I think just to know, I honestly thought it would happen sequentially. I thought, well, you don't go from stage one to stage four. If I'm going to have a recurrence, it's going to be stage two, or it's going to be a local recurrence before it.

you know, before it's a metastatic recurrence. So that I sort of tried myself a little bit on not being a little bit more astute in researching and finding that out on my own. But guess what? I'm not alone. Most people that are diagnosed metastatic as a recurrence didn't know that either. So once I was diagnosed metastatic, you know, I dug back into the research.

and didn't connect again on social media with anybody, didn't even think about it. I was on social media, just didn't think about using that as a resource. So I had been using Living Beyond Breast Cancer's website since my early stage diagnosis, just for information resources. It was one of several that I used. And I happened to go on there and see that they had a metastatic breast cancer conference in April of every year.

and they had an advocacy training program called Hear My Voice. So I thought, well, I don't really know what that means to be an advocate, but I'm going to apply. I mean, I had, you know, I thought, what do I have to lose? The worst that can happen is they say no, and then maybe I just go to the conference and attend and learn. But I got accepted.

Janice Cowden (24:23.118)
And so I went, that was about 10 months out from my diagnosis when I went to my first ever breast cancer conference, which is their NBC conference. So I did that all at the same time. We had our Hear My Voice training during the conference. And you know, you walk in, there's a ballroom with like three, 400 people. And the majority of them are living with metastatic breast cancer. And here I walk in, never having met anyone with metastatic breast cancer before.

not really knowing that there were NBC support groups on social media, that opened my mind, it opened doors, you know, I got connected. And I think that's really when you talk about how do you learn, it is a matter of immersing yourself and also being open to understanding that those connections that you make with people who are, who have metastatic breast cancer, there's going to be grief, there's going to be loss.

a lot of it. But in the end, those relationships are so valuable and so worth it. I learned from other patients, I learned from attending scientific conferences, I attend a lot of webinars. I know a lot of people who have no healthcare background, no science background, who are brilliant. They know way more than I do.

So I don't think that's required. I hear it a lot when people say, well, you were a nurse, so that makes it easy for you. In some ways, yes, I understand some of the biology. I understand some terminology that maybe someone who doesn't have any background might not understand. But guess what? It goes back to that theory that I learned in communication class. The more you hear it, the more likely you are to retain it.

And that's really what happens is you get connected with people who have like interests, like most of my advocate friends love the science as well. So, you know, it's like, it's like your peer group, they become your peer group. And so you hang with these people, you learn from them, you get connected, you know, in areas that you didn't know, you hear about conferences you didn't know about, you get involved in organizations.

Janice Cowden (26:47.118)
And that furthers your learning. And I think for me, it's always been, you know, I truly am a person that believes that knowledge is power. So I never stayed away from learning, even the hard stuff, you know, looking at those, when I was diagnosed, you know, the median overall survival for metastatic triple negative was about nine to 15 months. And so when you're diagnosed with that and you're reading these things, some people might turn away because it's just

overwhelming. For me it's like I gotta know.

The Patient from Hell (27:17.358)
Yeah.

The Patient from Hell (27:24.462)
Hmm. On that, you know, I, you know, you know me well enough know that I fully believe knowledge is power and fully believe that the whole point of this podcast and all the work we do is to get patients and families access to the right knowledge at the right time, because it's very overwhelming. And I like you get the same thing of like, yeah, you're a bioengineer. Therefore I'm like, well, yes, but

You don't have a choice when you get that done. You have to.

Janice Cowden (27:53.102)
You don't. And I think you have to have a little bit of a passion to learn it, whether you have any background knowledge or not. There needs to be some level of passion that you have this passion that you just want to know. You want to continue learning. And clearly being an older adult going to college, I do consider myself a lifelong learner.

The Patient from Hell (28:20.526)
I love that so much. I love that. OK, I told you about the rapid fire, our little new experiment. I had come in prepared for, I don't know, 10 questions and talking to you. I told you I have a lot more. Sorry. OK, so we're going to do this. I'm going to ask you a series of what is questions. And if you want to just do a quick 30 second definition, that would be great.

Janice Cowden (28:22.286)
I'm going to go ahead and close the video.

Yes.

Janice Cowden (28:35.342)
No, ask away.

The Patient from Hell (28:48.75)
And then we'll come back to your story after our little rapid fire section. All right. Okay. All right. What is an advocate?

Janice Cowden (28:53.166)
Absolutely. Let's do it.

Janice Cowden (28:58.734)
An advocate is someone who

seeks to better inform themselves and better inform their community. It's a whole lot of different things. And there's all types of different advocates out there. It depends. It's somebody who really speaks up for and promotes something. That wasn't a very good definition, but that's all I've got.

The Patient from Hell (29:25.614)
Yeah, we're gonna do one more of this. What is a patient advocate?

Janice Cowden (29:31.022)
A patient advocate is someone who either ensures that they are getting the quality of care and knowledge that they need for their own self, or they help other patients, or they do both.

The Patient from Hell (29:45.998)
What's NBC?

Janice Cowden (29:48.622)
MBC is metastatic breast cancer. Metastatic breast cancer is stage four, which means it has spread from the breast to distant sites such as lung, brain, bones, liver, sometimes distant lymph nodes.

The Patient from Hell (30:04.526)
What is TNBC?

Janice Cowden (30:07.662)
TNBC is triple negative breast cancer. Basically, it means that the cancer is not fueled by any of the typical biomarkers such as estrogen, progesterone, and HER2.

The Patient from Hell (30:21.358)
What's a lymph node?

Janice Cowden (30:23.822)
Lymph node, goodness, you're really challenging me. So lymph node is basically part of our immune system that filters out all of the trash and the junk in your body. It could be viruses, could try to filter out cancer. It's kind of a clearing house.

The Patient from Hell (30:26.734)
Sorry.

The Patient from Hell (30:40.558)
I love love It's actually a very nice definition. This is why I challenged you. what about GPA? You know, Janice, I'll get the overachievers to answer these questions. All right, what's METAvivor?

Janice Cowden (30:43.342)
you

I'm sorry.

whose mission is, there are a couple of different missions, but the most important is that it funds metastatic research for metastatic breast cancer only. So basically we fund grants, research grants. And we also do peer to peer support and we have other programs that we do as well, but the primary mission is to fund

research for metastatic breast cancer.

The Patient from Hell (31:29.198)
What's oligometastatic?

Janice Cowden (31:31.982)
Oligometastatic is a term that basically means very few lesions and the definition has not been standardized, but it in general is about one to five metastatic lesions in maybe one or two body systems.

The Patient from Hell (31:49.966)
What's overall survival?

Janice Cowden (31:52.654)
Overall survival is an average basically of how long a person is expected to live with a certain condition or disease.

The Patient from Hell (32:06.638)
What's a recurrence rate?

Janice Cowden (32:09.23)
Recurrence rate is the percentage of people that are at risk to have a recurrence of a disease such as breast cancer.

The Patient from Hell (32:21.838)
What's distance, ah – distant reccurence?.

Janice Cowden (32:26.478)
Distant recurrence is recurrence of, let's say for breast cancer, distant recurrence means that you have recurrence of your breast cancer that has gone beyond the local and regional lymph nodes, such as in the axilla or the armpit or in the internal memory chain.

The Patient from Hell (32:50.766)
Thank you. I think you answered my next one. We're going to do it. What's local recurrence?

Janice Cowden (32:54.542)
Local recurrence is a recurrence of your disease either in the same area as the primary site or still within that local regional area.

The Patient from Hell (33:04.846)
What is Scanziety?

Janice Cowden (33:06.766)
Anxiety is a horrific, stressful period of when you are due to have scans or imaging scans, whether it be a PET scan, CT scan, bone scan, whatever kind of imaging scan it is. It can be either leading up to anxiety, leading up to having the test done, or for me, it's really the amount of stress and emotion that occurs between

having had the scan done and waiting to get the results. It's anxiety.

The Patient from Hell (33:44.782)
What's NED?

Janice Cowden (33:47.086)
NED stands for no evidence of disease, which means on imaging, no evidence of the disease that was being treated can be seen. Doesn't mean it doesn't exist. Could be microscopic, but there's no imaging or there's no evidence on imaging scans.

The Patient from Hell (34:08.046)
What is SABCS?

Janice Cowden (34:10.893)
That is the San Antonio Breast Cancer Symposium, which is an annual scientific breast cancer conference held in San Antonio, Texas.

The Patient from Hell (34:20.493)
Janice loves.

Janice Cowden (34:22.03)
that I do love.

The Patient from Hell (34:24.334)
What's ASCO?

Janice Cowden (34:26.893)
ASCO is the American Society of Clinical Oncology. They have many different, it's an organization that does a lot of different things. For instance, I am a patient advocate on an ASCO-led CDK 4:6 dosing study. So they do clinical research, they do guidelines, they do all kinds of things, but ASCO also has an annual meeting which is held in Chicago every year,

in late May or early June. And it is for all cancers. It's a scientific conference that is for all cancers, not just breast cancer.

The Patient from Hell (35:05.518)
What's ADC?

Janice Cowden (35:08.686)
ADC is an antibody drug conjugate. So that is a drug class which is newer for breast cancer, metastatic breast cancer. And it basically is a drug that's kind of a three-part drug. There's the antibody that finds the receptor on the cancer cell. There's the linker that attaches it. And there is a payload that is included in there that is released once the

once it has internalized into the cancer cell.

The Patient from Hell (35:41.486)
What's IO?

Immunotherapy, sorry. Sorry. What is immunotherapy?

Janice Cowden (35:46.99)
I'm like what?

Janice Cowden (35:52.814)
Immunotherapy is a targeted therapy for breast cancer that basically uses your own natural immune system to attack cancer cells.

The Patient from Hell (36:07.95)
What are checkpoint inhibitors?

Janice Cowden (36:12.046)
Checkpoint inhibitors are, gosh, how am I gonna explain this one?

Janice Cowden (36:24.206)
Are we talking just about CDK 4/6's basically?

The Patient from Hell (36:27.63)
Next question, so we can go to that one. What's a CDK of 4/6?

Janice Cowden (36:29.934)
You know what? I don't really remember what the C and D, but I know that the K is for kinase, but a CDK4/6 inhibitor, which there are actually other CDK inhibitors, what they do is they work on preventing the cancer cells from dividing and multiplying at a certain phase of the cell cycle division.

which could be cell division cry.

The Patient from Hell (36:59.694)
You're so good at this. You're so good at this. my god. Okay. What's median survival?

Janice Cowden (37:08.75)
Median survival, it's not average and I always get tripped up on this. I know it's not median. I mean, it's not the average survival. It's not like 50:50. I can never remember exactly what median means, but when we talk about median progression-free survival or median overall survival in relation to a clinical trial, it's sort of that line where I guess the majority of patients fall into

Like if your median progression free survival is 6.4 months, that was where most people, that's how long they went without having progression of disease or median overall survival. Same thing. That is when, you know, the majority of people were alive at that timeframe, I think. I think.

The Patient from Hell (37:55.95)
think you're right. PFS. What is PFS?

Janice Cowden (38:01.838)
Progression-free survival basically is the timeframe from when your disease is being treated until you progress. So with metastatic breast cancer, if you're being treated, you're diagnosed, you're put on a drug, it's the expected amount of time, I guess, or the time that is found in a clinical trial

before the majority of people have progression of their disease. So it's that time frame in between before your, while your disease is stabilized, or maybe you have no evidence of disease for that amount of time.

The Patient from Hell (38:41.678)
What is DFS?

Janice Cowden (38:44.846)
That is disease-free survival, or sometimes you'll see DFI, which is the disease-free interval. And that can be the timeframe, like for me, between when my early stage was diagnosed, I had a disease-free interval of five years between when I last was diagnosed with early stage and between my metastatic recurrence.

The Patient from Hell (39:13.102)
That's all the questions I have for you. Is there a question I should be asking you?

Janice Cowden (39:17.678)
No, I can't think of any.

The Patient from Hell (39:20.014)
All right, so I'm gonna try and wrap up our time together by asking you two more things, broad or not rapid fire. It's whatever you want. When you were talking, there was something that struck me and what struck me was, it was two things. I heard you describe, you got the metastatic diagnosis, you had the few rounds of AC, and then the scan was clean,

and you were uncomfortable.

The Patient from Hell (39:53.39)
And if you're okay with it, I'd love to talk about that because I think that's a part of the cancer narrative that people do not understand. Because when a scan is clean, there is this expectation of celebration. There's this expectation that you should be happy. You should be glad. And yet I fully understand that moment of yes, but.

And if you don't mind talking about that Janice, I think that would be super helpful.

Janice Cowden (40:25.486)
I don't mind at all. For one thing, I think, you know, when, when, when you're early stage and scanning was not part of my early stage standard of care. I mean, once I was done, we, I didn't get scans. I had mammograms, but other than that, I didn't get scans. And it's not necessarily standard of care after early stage breast cancer to get any kind of scans done, but with

The Patient from Hell (40:39.694)
Whoa.

Janice Cowden (40:54.19)
with the metastatic, it's incurable but treatable. I try not to use the word terminal because I think that is a joy stealer. But you know, with metastatic breast cancer, and I think when you're first diagnosed, you know or you learn that it's incurable but treatable. So you don't expect to have

It's great to have a clean scan, but one of the things that you learn is that that can be very fleeting. And a lot of people will reach NED or NEAD. And it's not expected to last with metastatic breast cancer. So my discomfort was mainly because when we originally set up the treatment care plan,

he had told me we were going from AC and then we would follow that with Carboplatin. And we didn't talk about if your scans are clean or if they're not clean, that was just the treatment plan. So I couldn't understand, you know, I was fearful. I mean, that is fear. It's fear of, but wait, everybody else with metastatic breast cancer stays on treatment for life. What do you mean you're not going to keep me on something?

Because to me it was a matter of preventing that progression of disease. And I felt like it was a safety net that I didn't have. So yeah, that was quite uncomfortable for me and uncomfortable enough to the point where I did get those second opinions because I thought, what if I'm not getting standard of care? What if I should be on something? And you know, they all confirmed

that his plan was what they would do too. I also wanted the second opinions because I really believed I was stage 3C and not stage 4. So I really did. And it wasn't denial. It's just that, you know, the one Heiler node that was the contralateral node, I just didn't realize that just that one little tiny node could make me stage four,

Janice Cowden (43:18.67)
just because it was on the opposite side of my breast cancer. But I also got confirmed that it was stage four by all four of my second opinions. But yeah, the fear is, you know, it's like early stage. I think the first two years after I completed treatment for stage one triple negative, I had an enormous amount of fear of recurrence. It was almost paralyzing at times.

And at that time there was no you know the early stage triple negative now they will put them on some type of maintenance therapy often after they finish their treatment of Zolotah, sometimes immunotherapy. There was nothing like that it was just and I wasn't getting scanned. So I think once you get a breast cancer diagnosis that fear doesn't really ever leave. I'm much more comfortable now being eight years out but yeah that was it was.

It was stressful.

The Patient from Hell (44:17.742)
I definitely relate. I definitely relate. I don't remember feeling scared when I got diagnosed. People would ask me, they're like, are you scared? I was like, no, not really. Like early stage, at least today, and I was triple positive, so not triple negative. The outcomes are good. Like they're good outcomes. Like the stats are actually in your favor. And I remember, I don't remember being scared at diagnosis. If you ask me today, my God. Ha ha ha.

It's cool! The world is - my god. I'm also really, really looked very carefully at recurrence rates and... ahahaha. Knowledge is power and then knowledge can be paralyzing.

Janice Cowden (44:46.51)
The more you know.

Janice Cowden (44:59.31)
Ignorance is bliss. You know, sometimes, I mean, that is true. I will say that I was scared at my stage one diagnosis because I had known another pharmaceutical rep who was diagnosed triple negative de novo and she lived nine months. And so that was the only thing I knew about triple negative breast cancer really, other than what I researched on my own. And you know,

stage one, I didn't know that I wouldn't die from early stage breast cancer. And I certainly didn't know much about recurrence rates either.

The Patient from Hell (45:42.062)
I'm gonna ask you, I was not planning on asking this, but I'm gonna ask you, and if you don't want to talk about it, tell me and we don't talk about it, okay? One thing I struggle with is, the more and more I get involved with the cancer community, the more friends you make, and the friends you make in the cancer community are just, they're special, like it's just, it's a special relationship. They also may not live very long.

Janice Cowden (45:47.95)
Okay.

Janice Cowden (46:00.142)
Yes.

The Patient from Hell (46:12.686)
So my question for you, if you're willing to talk about it, is how do you grapple with that? How do you grapple with having these incredibly deep relationships with people who statistically don't have the best odds? And then sometimes even if their odds are in their favor, they don't fall into the median band, right? And you end up losing people. So that's my topic.

Janice Cowden (46:39.342)
Now I'm happy to talk about that because it is, I think it's something, especially those who are newer to their diagnosis or those who are new into advocacy. I think it takes a while to really wrap your brain around that. And I will tell you that when I did the Hear My Voice training, we lost our first classmate three weeks after our training. We lost five more within the next six months.

And I had no idea how to deal with that. And most of my classmates through the Hear My Voice class didn't know either. And we were so, I couldn't even think about advocacy because I was grieving these people that I had just met. And I didn't know what it was like to get to know people so quickly and so deeply. You know, you you those friendships very, very deeply.

and then have that much loss, one on top of another. And so I give LBBC a lot of credit because what they did is they saw that we were struggling and they, you know, we were supposed to have like quarterly calls, check-in calls for that, for our class. And they started doing monthly calls to check in with us and where we could just talk, we could talk about it. So that was very helpful.

But I will say the first two years that I was in advocacy, each loss sort of threatened to paralyze me and make me want to walk away because it's like losing your best friend over and over and over again. And it's very difficult. So I finally figured out a way to, I guess, channel that grief into productivity.

And that was through advocacy. And what I really, it was a mindset that I had to develop on my own. And the way I started looking at it is they have no voice anymore. And most of my friends are very powerful, very wonderful advocates. The friends I've lost were wonderful advocates. And I thought, how unfair is that for them to die, lose their voice? They no longer have a voice to advocate.

Janice Cowden (49:07.342)
It's my job. It's my role because I've been given a gift of time. So guess what? I use that gift of time and I channel that grief into productivity through advocacy. And that's what gets me through. It doesn't make the losses hurt any less. They are, in fact, this past year, the past 12 months, probably 18 months have been horrible.

I've lost so many friends that I had known, you know, advocates that, that I met years ago, years and years ago. And I guess you just, they do so well until they don't. And some of them, you know, the end came on very quickly for some others we watched, you know, and you have that anticipatory grief where, you know, someone's going to die. They're failing.

Sometimes it happens quickly, sometimes it doesn't. And when it, when it happens very quickly, I, you need a moment to catch your breath. I think everybody has to deal with it differently, but that's the only thing that gets me through. It's not that I'm numb to it or that it doesn't bother me, but I feel like I owe them. I owe them my time to continue advocating on their behalf as part of their legacy.

So that's what gets me through.

The Patient from Hell (50:35.438)
I have tears in my eyes right now.

Janice Cowden (50:37.23)
I'm sorry.

The Patient from Hell (50:40.75)
This is a first.

Janice Cowden (50:42.542)
I'm so sorry I made you cry.

The Patient from Hell (50:45.486)
No, no, no, I don't think you made me cry. I think I have tears because it's so true.

Janice Cowden (50:52.366)
It is, and it's hard in this past, you know, the past six to eight months, many of my very, very close friends have had progression of disease and some of them are, you know, they're beyond their fifth, sixth line of treatment. And that plays into that anticipatory grief. I mean, you know that, you know, we have a finite number of treatment lines and with each line, it works for less time typically. So.

Yeah, it's hard. It's really hard. And I don't think – there have been times when I've wanted to walk away because it's just too painful. It's too hurtful. But then I can't. And I won't.

The Patient from Hell (51:38.446)
I think you just summarized our podcast. No, I'm totally, I think you really did. I think that's kind of like I can't and I won't. I just think it captures, I think it captures the work, the passion, the mission. One of the many reasons I so admire you and love you and I see the work you do for the community and I think we're better for it.

Janice Cowden (51:41.006)
I'm sorry.

Thank you.

Janice Cowden (52:01.902)
Bye.

The Patient from Hell (52:07.534)
Janice, thank you. Thank you for being a part of the community. Thank you for leading the community. Thank you for being a guest on this episode. And thank you for teaching me everything you do, because you really do. You teach me a lot. So thank you.

Janice Cowden (52:19.662)
And thank you, that learning is bi–directional. I learn a lot from you and I'm so grateful to know you.

The Patient from Hell (52:26.734)
Likewise. watching.

Thank you.

Janice Cowden (52:30.83)
Thank you.