The Journey From Early-Stage Diagnosis to MBC with Joy Jenrette

This week on Real Pink we are hosting daily conversations about metastatic breast cancer (MBC) as part of National Breast Cancer Awareness Month. In the US alone, MBC is expected to kill 42,000 people. To turn MBC awareness into action, visit: https://mbc.komen.org/ and contact your local lawmakers by texting “MBC” to 40649.

Meet Joy

On this special episode of Real Pink, Joy Jenrette shares her story. Joy was twice diagnosed with early-stage breast cancer and is now living with metastatic breast cancer. Jenrette says that MBC is nothing like her previous diagnosis. Her treatment focuses on attacking cancer cells when they pop up while bearing the side effects of her treatment so that she can enjoy her fullest life with family and friends.

Transcript

Adam (00:03):

This week on the Real Pink podcast, we are having real discussions about metastatic breast cancer. We’ll be welcoming researchers, advocates, and people living with metastatic breast cancer to share their stories, their experiences, and their words, and encouragement. Everyone can make a difference in the life of someone living with this disease by donating to breakthrough research and urging elected officials in Washington DC to pass pending legislation that would directly help this community. Details on how you can turn awareness into action are in today’s podcast description.

Adam (00:34):

Joy Jenrette shares her story of being diagnosed with breast cancer at an early stage, having a recurrence and then having another recurrence in the form of metastatic breast cancer. She’s been living with MBC and working to break down barriers to much-needed care for herself and the MBC community. Joy, welcome to the show.

Joy (00:57):

Hi Adam, how are you doing?

Adam (00:59):

I’m doing fantastic. You’ve got a great smile. I can tell this is going to be a great interview. I’m really looking forward to hearing your story. So let’s start there joy. Tell us a little bit about yourself and your journey with breast cancer.

Joy (01:13):

Well, Adam, I am originally from Atlanta, so I’m at one of those few Atlanta natives and I’m married to a great husband. He’s awesome. I don’t have any kids. I am an engineer by trade and working in corporate America for majority of my life. And honestly, I’m a pretty happy go lucky person. So I’m kind of able to go through breast cancer journey through that same type of lens. Sometimes I try to make it as I’ll try to be as upbeat as possible, but it was obviously very difficult at times as well. So, but in regards to my journey, I’m only 38 right now, and it has been a long journey for a 38 year old. I started it, it started about 12 years ago, actually, my husband, well, he was my boyfriend at the time actually was the one who found my lump.

Joy (02:05):

And I was pretty embarrassed because I had didn’t notice it myself, but he brought it to my attention. And so I went through and went to my primary care, got a mammogram ultrasound. And it took a little bit of time, but because I was 25, 25 to get insurance or grow those things, but they approved them. And once I had my ultrasound, they said, Oh, Hey joy, you have, it looks like a complex cyst. And my mom were like, what is a complex cyst? And so there’s like, it’s probably benign, but I still want you guys to remove it. And so we kind of just demanded them, but you know, pushed for them to remove it. And a couple of days later I had I had, I had it removed. I had a surgical biopsy and from that surgical biopsy, they found out that it was cancerous.

Joy (02:55):

So unfortunately I actually got those results on my mother’s birthday. And so now, you know, when, when everyone’s talks about, Hey, what’s your, you know, what’s your date that you were diagnosed with breast cancer and things of that nature. I always have to align it with my mom’s birthday, which kind of stinks, but you know, it is what it is I can use. Once I was diagnosed my doctor pretty much had a pretty clear plan. She’s like, Hey, you need to have surgery and and you’ll need chemo. And then after that, you will have to be on maintenance medications for about, you know, about five years. I’m like, okay, sounds like a plan to me, let’s go forth and do this. It was obviously shocked just to, you know, to be 25 and be diagnosed with breast cancer, but I felt way more comfortable when she felt like a very clear plan the day, Hey, I can beat this.

Joy (03:46):

We can, we can get it, cure it and move on. And so I did that and in, in the backdrop, I’ll say that I was working full time and I had just finished my first semester of part time law school. And so I was just like really frustrated by the fact that I was going to have to withdraw or at least from that semester. But I did pick it back up a year later where I left off and, and finished, but it was just very frustrating. Does tend to start something and just kind of your life get put on pause for a second. So then I went on with life. I had treatment and then I started my maintenance medications. I did my annual scans in about four and a half years later. I will say that the second two dropped. And what I mean by that is I had a person once you’ve had breast cancer, you are now kind of in a a constant state of getting scans, every annual scans to make sure it doesn’t come back.

Joy (04:44):

Right. So four and a half years later, I was devastated because my scans did what they’re supposed to do. Like we found breast cancer, again, I’m in one of my lymph nodes. And so it was kind of like a double edged sword. I was devastated, but at the same time, I was glad that the scans found the breast cancer recurrence if it was, was supposed to do, I had treatment again radiation and chemo, starting back on the maintenance medications again, once I finished that, I actually, I went on with life again, coincidentally, I found out about my recurrence, the last semester of bylaws, my last, my last semester part-time law school. So I delayed taking the bar, but I did end up taking the bar while I was finishing up my chemo treatments. So I studied for it and and passed the bar.

Joy (05:35):

But then I said, Oh, this is not the lifestyle I wanted. I had to have some changes that pivoting in my, what I wanted to do in life. And so after that kind of went on, I for four more years, I feel like as soon as I get to these five-year marks, you know, just cancer just wants to like rear his pointy head. And I was traveling for work. He had gotten his cough. It’s really dry cough. I don’t know. It just would not go away. It was pretty much like a, just persistent cough that wouldn’t go away. And when I parent home from the work travel, I went to the urgent care and they’re like, Oh, it’s probably bronchitis. You know, here’s the Z-Pak went away. Then it came back again. A couple of weeks later, I went back to urgent care and they’re like, same thing, you know, here’s another Z pack.

Joy (06:16):

You know, it was probably chronic bronchitis. So now you should probably go see your, your primary care. I went to go see my primary tier. And they’re like, Oh, you probably have adult onset asthma. So I’m like, okay. I, you know, they gave me some medicine for that, you know, a haler things of that nature. And then still wasn’t really going away. And so I went to an ENT doctor and in the meantime, my six month follow up with my oncologist came up and she’s like, let’s look a little deeper. Cause my Texas rates were always clear. So she did a CT and then she said, Hey, something looks suspicious and then did a pet scan. And she was like, yeah, it looks like your, your cancer has metastasized. And so it had metastasized it’s out of the breast and lymph nodes, hence all the parts of the, my other orients. So it was definitely devastating, but I was just, I shouldn’t do this. I shouldn’t have been surprised, but I was because I felt like if I’m getting my annual scans all the time, it should have caught this before it metastasized. And so that in itself was a little frustrating for me because you’re like, wait, I’m doing what I’m supposed to do.

Adam (07:21):

Yeah, yeah, yeah. Wow. So I’d love to kind of compare and understand your experiences, both in getting an early-stage diagnosis and then how that compared with getting an MBC diagnosis.

Joy (07:36):

All right. So an early-stage diagnosis, it was very devastating, but very clear cut. There’s a clear plan. They prepare before the side effects, you know, for going through treatment, they made it feel like it was just routine. Very standard of care is going to be routine. We got this, you know, you know, people don’t die from early-stage breast cancer it’s so I felt very comfortable that I wasn’t going to die. They are going to be able to remove it. I was going to be cured and move on with life. And I did that a couple times, obviously with both of those early-stage diagnosis. But with metastatic, I actually went into my metastatic diagnosis thinking with the same early-stage mindset, meaning I thought that we will, my first treatment was going to be the cure. All it was going to make. I’ll just be able to do this treatment and then go back to life as normal.

Joy (08:29):

And what I realized is that is not the case for when you’re metastatic. It is you could be on take half to take multiple different lines of treatments, but it’s really a, it’s a science to it. And what I mean by that is it’s, you know, everyone is not the same. There’s no necessarily a clear standard of care because you know, everyone’s metastases are in different locations, you have your different, you know, you have obviously different breast cancer types. There’s very, you know, you’re really getting into how your DNA of you looking into the DNA of your tumor. I told someone, I feel like sometimes I’m on Dr. House, you know, and where on the back of the big whiteboard of all the different aspects of you and your cancer and, you know, and your metasticies and, and just, you know, how you’re tolerating certain treatments. It’s definitely like a scientific discovery every time.

Adam (09:24):

It’s like a mystery that has to be solved.

Joy (09:26):

It is why is it doing this time? Or why is it in the form of this thing? Or what have you, so, to be fair, I feel like I’ve kind of become a little bit of a mini scientist, myself trying to connect these dots and just understand all the different treatments, all the different types of clinical trials. And just to really be able to talk intelligently to my doctor, honestly, to be able to challenge my doctor, Hey, why are you decided to do this treatment over another treatment? So I can understand the side effects that I’m feeling and making sure that they’re if it’s normal if it’s related to cancer or is this just a, you know, normal pain, any regular person would have, or regular person issue, is how do you figure out a better, is it a regular person issue or is it a cancer issue or, you know, and so you’re always trying to figure out what, you know, which both does that, you know, that side effect or that, you know, that pain or that, you know falls into it. Yeah.

Adam (10:17):

Makes sense. And so you’ve, you’ve maybe answered this a little bit already, but I’d like to dive a little deeper. Tell us a little bit more about what it’s like to live with MBC.

Joy (10:27):

So I have to say it for a few things. Number one is kind of on a daily basis, you are always trying to manage your side effects of any treatment that you’re on. So, and for me, one of the biggest side effects is fatigue and fatigue is one of those things that’s kind of gray, right? So you can’t put your finger on it, but when you feel it, you definitely feel it. Sometimes I, I tell people I hit her like a fatigue wall, meaning I’m going, going, going. And then all of a sudden, bam, I hit a wall and I literally have to like rest or take a nap. And, you know, and historically, you know, before cancer or before in BC, I’m able to kind of push through the tiredness and right in, I can’t really push through tiredness. Like I, I like I clued before and my, I have to get them an adequate amount of sleep in order for me to literally function.

Joy (11:26):

And before I was able to kind of just push through that, but there’s a lot of other side effects to people have to their treatments. I’ve luckily haven’t had a lot of them like, you know, things like nausea or pain, other types of pains and things of that nature. So I’ve been fortunate, but I know a lot of my MBC friends have had other side effects. So they have to manage on a daily basis to more things that I would say, at least for me is I am always trying to figure out what is the next treatment that I may have to get on. Because with MBC, there is a lot of research, a lot of new treatments that are out there, a lot of clinical trials, and you were really trying to stay abreast of, you know, what could be, I mean, what’s next cause, cause you’re always waiting for your current treatment to stop working.

Joy (12:17):

If you’re waiting for your treatment to stop working in order to, for at least for me to kind of relieve some of the anxiety of that is to always know kind of what are my other options and what is my next options. And so I do spend a lot of time just trying to understand that. And the third thing is the self-advocacy, when you have metastatic breast cancer, or if you have, honestly, if you have any type of cancer or chronic disease for that matter, you know, you have to self advocate on a different level. And what I mean by that, you have to advocate with your doctors. So they, number one, know what you’re feeling from your side effects of the treatments and they don’t dismiss them. You have to advocate for yourself with your insurance providers because your insurance providers are, you know, they look at you as a number.

Joy (13:06):

And so you have to make sure that you’re getting the adequate coverage that you’re supposed to be getting. You have to make sure you’re advocating for yourself when it comes to the hospital billing department. You know, when you get these hospital bills or these bills from your doctor’s offices and things of that nature, you, you have to make sure that you don’t number one, fall through the cracks. You don’t get overbilled. And I think, and so you just really have to always stay on top of it because it’s really, you’re your own best advocate. And if you are not, you’re not advocating for yourself, you’ll fall through the cracks, you know, and it’s your life. And I always tell people is your life. Your health is on the line. And honestly, it’s your financial wellbeing, this on a line too, you know, when you kind of don’t push back and you don’t advocate for yourself from a financial perspective, I kind of have to do inner self-advocacy. What that means is like, I have to remind myself that I do have, and I have to, you know, rest, I have to recuperate and I have to, you know, realize that I do have limits and I can’t you know, I can’t push myself. Like I may have pushed myself before and, and just kind of recognize what my limits are and that’s it, it’s hard to, it’s hard to kind of do your own like inner check of a self-advocacy when you want to always push them anymore.

Adam (14:32):

I can imagine. And so that kind of leads me to the last question then, have you had any barriers to care? And if so, what is the biggest obstacle been to receive? It?

Joy (14:43):

I’m fortunate enough to have really good healthcare throughout my entire journey, but a lot of women are aren’t that fortunate? Well, one of the things that I will have to say, no matter what type of healthcare coverage you have is making sure that your doctors are working for you. What I mean by that is doctors are service providers. And if they don’t meet your expectations, you need to find a new service provider. And it is not necessarily on purpose. Some doctors are, you know, their bedside manner may not jive with you, or they may dismiss your concerns and you feel calm, you feel dismissed. And one of the things that you just need to make sure you do is especially when you have a chronic disease and your relationship with your doctor is lifelong, or it is a very long, long relationship is is to make sure don’t feel guilty about changing your doctor.

Joy (15:39):

You know, if they are not meeting your expectations, there are lots of doctors that are out there, and there are doctors who can, who really you can connect with and, and not all doctors connect with all patients. So you just need to make sure that you find the doctor that you connect with the best and the most, and who has your best interest in mind and who was not, who will not dismiss any concerns that you have because with MBC, you are always going to be in different types of treatments. You’re going to have different types of side effects and you really gotta be able to navigate what is kind of in that cancer bucket versus in the, you know, it’s just a regular pain bucket and, and you need, your doctors need to be in tune with you to be able to help you navigate and figure that out as well.

Joy (16:26):

So I don’t be afraid to challenge their thought process and making sure that you know, that you understand where they’re coming from, why they’re making the decisions that they’re making, what are some of the alternative considerations that they kind of deliberated on to come to their conclusion so that you know, that they’re actively thinking about every aspect of you when they’re making their decisions. Everyone. And MBC is a unique case. Everybody is unique, so you are not difficult and your journey is not typical. So I’ll guess I’ll leave it with that. Adam is just, you know, every MBC journey is very unique and it should be treated that way.

Adam (17:08):

Yeah, no, that’s great. That’s great. Well, Joe, I love your energy. Love your enthusiasm. Love your commitment to finishing law school and just going after. I mean, I can’t even imagine like doing chemo and the bar at the state for the bar, the same dilate. It’s just unbelievable. Thank you for just your, your tenacity and the way you’re going after life. And thank you for sharing that life with us here on the show. It’s been a pleasure to have you.

Joy (17:34):

This has been great, Adam. I hope I can help some women out there. And thank you for having me on today.

Adam (17:43):

Support for MBC week is brought to you by our partners, Eli Lilly and Merck. Thank you for joining us on this special episode of Real Pink, focused on metastatic breast cancer. You can help the metastatic breast cancer community today by donating to breakthrough research by visiting mbc.komen.org. You can also contact your local lawmakers by texting MBC to 40649.

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About This Episode

Intro and outro music is Into Thy Heart – Instrumental Track by Ivan Chew.