The Paid Leave Podcast

A 30-year old's survivor guide to living and thriving with Breast Cancer.

• The Connecticut Paid Leave Authority • Season 3 • Episode 5

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One in 8 women will be diagnosed with breast cancer in their lifetime. Most are over the age of 50 when they are diagnosed, but not all of them are.

Bianca was 2 days shy of her 30th birthday. She had a 2-year-old son, when she got her diagnosis. She was diagnosed with invasive ductal breast cancer and found it herself during her monthly self-breast exam. Her journey of survival began with chemo, radiation and further ways to curb a recurrence. Bianca is 6 years cancer free but is always looking over her shoulder. She continues to educate her community with her own story.

The Komen New England Executive Director Nicole Marohn says education is key to a better outcome with breast cancer. She says that black women still have a 4 percent lower incidence rate of breast cancer than white women, but they have a 40 percent higher breast cancer death rate. Komen does outreach in underserved communities to ensure a better outcome.



Resources:

CT Paid Leave
CT Paid Leave

Susan G. Komen for the Cure Connecticut
      http://www.komenct.org/ 
 

   The Connecticut Breast Cancer Coalition/Foundation
      http://www.cbccf.org


   Breast Cancer Resource Guide for Connecticut     
      http://breastcancer.uchc.edu


    Breast Cancer: What Science Knows, What Women Think
      http://www.ehhi.org/reports/breast_cancer/

https://ctpaidleave.org/s/?language=en_US



https://www.facebook.com/CTPaidLeave



https://www.instagram.com/ctpaidleave/



https://twitter.com/CTPaidLeave



https://www.youtube.com/results?search_query=ct+paid+leave

Nancy Barrow:

Hello Connecticut, and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow, and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave and maybe just a little bit more. Connecticut Paid Leave brings peace of mind to your home, family and workplace. Welcome to The Paid Leave Podcast. October is Breast Cancer Awareness Month, and currently there are more than 3.8 million women who are living with or beyond breast cancer in the United States. And it's estimated that 43,700 deaths from breast cancer in women and men will happen in the country this year in 2023 Connecticut Paid Leave is a state law that went into effect in 2019 by Governor Ned Lamont. And we offer eligible workers in Connecticut up to 12 weeks of income replacement to take care of your own serious health condition or that of a loved one who has a serious health condition with caregiver leave. We have a really broad definition of family. It is related by affinity, which could mean that a neighbor or a co worker or a best friend that is like family can actually be a caregiver to you in this difficult time. This would apply to breast cancer patients, of course, and their caregivers. There are many ways that you can take leave, whether you do all 12 weeks in a row, or you need it intermittently as you're getting treatments or at a reduced schedule, so you can work and take time for maybe mental health appointments or doctor's appointments, and you have a year to use the 12 weeks, so it offers flexibility for patients and caregivers. Today we're thinking pink. We will talk about breast cancer, surviving breast cancer, and some of the stats and how do you can get involved in the fight against breast cancer. Joining me is Nicole Marone, the State Executive Director of the New England branch of Susan G komen. It's an organization that, of course, has been around for years. And also joining the podcast is a brave and wonderful survivor, Bianca, who is going to tell us her story. Thank you both for being on this podcast!

Nicole Marone:

Thank you.

Bianca Survivor:

Thanks for having us.

Nancy Barrow:

Nicole, let's just begin with you, as I kind of discussed what Connecticut Paid Leave is all about, with the 12 weeks of income replacement for eligible patients and caregivers. How does that help the well being of patients do you think?

Nicole Marone:

Absolutely it, It helps tremendously. Breast cancer affects everyone differently, and treatments differ from patient to patient. We hear from people every day who cannot afford to miss work because they need the money to live, but they also struggle to work because they are recovering from surgery or chemotherapy or must have radiation every day, and that can interfere with work schedules. Yeah, flexibility and paid time off offers patients the time to heal from what they're going through without the financial worry. Yeah, it takes a weight off of them so they can focus on overcoming their breast cancer?

Nancy Barrow:

Yeah, I think that's so important. And I don't know if this happened to you, Bianca, but did you have a really good support system? Did you have a lot of people who were taking you to treatments or Or what is your story?

Bianca Survivor:

Oh, absolutely. Well, I was diagnosed two days before my 30th birthday this year was six years I was cancer free. And yes, I did. I had a lot of friends and family that were supporting me, my husband, my mom and my dad, and then I actually have a two at the time, a two year old son, and so that was all hard for me. You know, I still was working. I had to be a mom, I had to be a wife and a friend, and I had to put all that on hold so to do my aggressive treatments, and I was diagnosed with invasive ductal carcinoma, cancer, breast cancer, and I found it myself through self discovery, and Unfortunately, it was er and PR positive, so it was hormone driven, and they had to do several surgeries to remove the cancer. I had to have a mastectomy, double mastectomy for prevention, and I also had to have aggressive chemo radiation, and I also had to, later on, have a hysterectomy, a total hysterectomy, so many surgeries, reconstruction, the whole bit. But yeah, I needed, I needed the help. I needed the support to be able to rest, to be able to eat, to take care of my child, and I took about nine months off of work.

Nancy Barrow:

And your work was really good. With that, they weren't. That's amazing that you had a good company, because a lot of people don't. And if you're working several jobs, that's where Connecticut Paid Leave, really can help, right? You know, it can really and even with your husband, like it can help with caregivers. When you get a diagnosis like that, and you're 30, like you're 30 years old. Were you in fight or, or, or fright mode when someone said, Hey, you have breast cancer?

Bianca Survivor:

Oh, absolutely fright. At first, I was devastated. You know, I'm like, Oh, my God, am I gonna die? Like, like, This is crazy. I'm only 30 years old, but in that moment, I needed to advocate for myself and I and I'm like, Okay, well, no, I have to live for my two year old. I have to live for my husband. I have to, most importantly, live for myself, you know? So, yeah, I had to do whatever needed to be done.

Nancy Barrow:

A diagnosis at 30 is really young, but now that you're at six years, because I always hear like the five year mark, you know, once you hit five years, like recurrence doesn't usually happen.

Nicole Marone:

Yeah, five more year mark is definitely the sort of the line in the sand when, typically treatments sort of wane, or you sort of feel like, okay, I've gotten through the large part of it. What I've heard, and maybe Bianca can speak to this, is you hit the five year mark, but you're always looking over your shoulder.

Nancy Barrow:

And what is the routine now for you.

Bianca Survivor:

I'm still seeing my doctors on a six month basis, my oncologist I see every year, but I'm actually still on hormone therapy, so they actually have me on this pill for 10 years. So I'm actually just hit, I just hit the five year mark, but I still have another five years to go.

Nancy Barrow:

So what is that? Is that tamoxifen or is what are you on?

Bianca Survivor:

I'm on the nastrizol.

Nicole Marone:

There are many different sort of medications that have come out. Tamoxifen is definitely one that is still being used, and actually has been very successful in so many patients. But since then, there have been other therapies that have come along, as well as treating the breast cancer for the patient.

Nancy Barrow:

And it's wonderful to know the leaps and bounds they've made in being able to talk about different types of breast cancer, because there's so many different types of breast cancer now.

Bianca Survivor:

Oh yeah. I mean, they always made sure to let me know that, you know, you may be diagnosed with this, but your symptoms and the way that you react to medication is completely different. You know, I breeze through chemo, whereas some, some women can't, and it's very difficult for them, I breeze through radiation. But, you know, it may be hard on on others that that take radiation for longer periods of time. You know, the medication and the treatment in its in and of itself, is a mental war. It is mental war, mental war as as well as a physical war. You know, you're, you're trying to balance all of it all at the same time, and then the quick, very fast pace, you know, every day you're going in for radiation for 510, minutes, and then you go in and again. So it's hard, you know, and it's exhausting, you know, the signs and symptoms of the treatment, in and of itself, it's hard to kind of bear with. And I still feel symptoms today, and it's been six years, you know. So what do you feel today? Fatigue, most days, tiredness, you know, from my medication, aches and pains in my joints, you know, because I had a hysterectomy, now I'm up to getting osteoporosis, so I have to make sure I take, you know, calcium supplements, and I have to make sure to do this and, you know, eat certain things. And you know, chemo sometimes messes with other parts of your body. So now I've been having, like, kidney issues, but you know, just just being an advocate for yourself and just not being able to, or excuse me, being able to speak to how you feel, to your doctors, and being vulnerable in that sense, is gonna help you all the more. So anytime I feel a new symptom, I'm like, Okay, well, hey, Doc, I feel this like, Is this related or is this just in my mind? Yeah, you know.

Nancy Barrow:

It is a mind game. It really is how mentally strong you are. Did you go to counseling? Did they offer like counseling to you?

Bianca Survivor:

So at first, when I was going through the treatments, it was just so overwhelming that I didn't even want to go to treatments or even just group therapies. UConn did offer, and Hartford Healthcare did offer groups. But I was kind of like, checked out, and I didn't want, like, anything else, oh yeah, no, and I didn't want to be around people. And I felt like it was, like, I was gonna get that sympathy, if you will. Like, Oh, you know, she that's a girl that had cancer, you know, and I was bald. I didn't, you know, the way that I looked. I didn't feel confident in that time. So I didn't want anything to do with anything. I just wanted to go to my doctor's appointments, take care of my treatments, go home, and then just kind of be around my loved ones. But during 2020 when we were all at home, I was like, Okay, I have some issues and some things I really need to work on. Yeah, and it's really starting to sink in a bit. And so I did. I sought out treatment. I found a wonderful therapist, and to this day, we talk about, you know, some of the hurdles that we go I go through, and some things that are triggers for me, and I've made great strides, you know, as far as, like, my mental health is concerned, and I journal a lot, I do things that kind of, like, help and help me get through some things as a mom, as a wife, you know, as you know, someone that's constantly in the doctors, or just, you know, going a lot of hats on, I have a lot, a lot that's going on, and it's hard about to find that balance.

Nancy Barrow:

Well, I'm thankful that you did, yeah, because I really feel like that that is you investing in you. And the other good thing is that Connecticut Paid Leave also covers mental health, you know, appointments and and all of that as well. So it's comforting to know that if you ever needed that this is here for you. So, you know. So if you needed to take some time off and do that, I know you have a good company that does that for you, but it's nice to know that it's here for people. Do you suggest at Komen that people do check in with their mental health when they're going through such a diagnosis?

Nicole Marone:

Yeah, no, it's it's a lot. It's a lot when you're going through it. And you know, part of what Komen has in our Patient Care Center is also patient navigators, and that's something that we have as a virtual option, because a lot of people do give up on their breast cancer journey just because it's so overwhelming. Overwhelming if you speak English, it's confusing, let alone if you don't speak English, I don't know how you make it through, but it's, it is. It's a lot. It's a lot personally to deal with, and then when you have other folks around, not only that, but there's also caregivers. Caregivers take on a lot emotionally, and so being able to know or be able to have that support, it's that's part of our Patient Care Center, as well as offering you know access to where to get psychosocial support. Yeah, it's really important. And you know, there's still a stigma around breast cancer, and so people feel that when you're diagnosed, and part of it is telling your story now, whether it's in a group setting or whether it's to a therapist you know going through that, and being able to heal by sharing your emotions and what you're going through and your concerns is really, really important your mental health, you know, I can't say they're directly relent related to your physical health, but your mental health really can affect sort of where you are and going in your journey and Keeping that positive attitude and keeping up on, you know, mentally, feeling okay is really a big part of the journey.

Bianca Survivor:

I can definitely attest to that. You know, a lot of my doctors were in shock on my results and just, you know, my progress through my treatment, and I always kept it positive. I always made sure to kind of, like, keep that stride of hope. And, you know, I got this, you know, I'm gonna get through this. And you know that strength that we don't know where it comes from, but it shows up in those moments. And it really helped me to get good, good treatment, good results, good recovery from everything that I went through.

Nancy Barrow:

Did you have people who went into appointments with you?

Bianca Survivor:

I did. I did. I had my mom for some appointments, and I also had my husband come in with me for some appointments. I actually found a friend of mine that went through cancer. She had Hodgkin's lymphoma cancer, and she would show up to my appointments with me, and she would ask questions, because she knew she knew what she was going through and what she had experienced, and she would actually help me. And like, she was a, I say to her to this day, she was my guardian angel, because I had no idea. Going into those appointments, they throw it to ask, yeah, they throw all this jargon at you. They try to, you know, explain this and that, and it's like, you don't, you don't even know what's going on. And sometimes your your your head and your mind just goes to the worst case scenario, you know, and sometimes it's not even that so.

Nancy Barrow:

And as a black woman, I know that a lot of black women don't go and do breast screenings, and it's amazing that you found it on your own. That's how my mom found hers in the shower. Yeah, tell me a little bit about your outcome. Like, do you talk to your community or, you know, because it's hard. It's really hard. There's a lot of people who don't have mistrust about the medical system.

Bianca Survivor:

Oh, I absolutely do. I always tell everyone I feel it on the first so every first of the month, I kind of like share it on my social media platforms, Instagram, Facebook. I raise awareness every year for breast cancer walks. I try to raise funds, just so that way it can go back into the community. I definitely benefited from a lot of scholarships. There was a time where when I was going through chemo, I was given Christmas gifts and, you know, benefits that you go through you so that way you don't have to worry about it or stress it, and at the end of the day, I always told myself, if I can just help one person, yeah, then this whole journey was totally worth it. And, you know, just being so open and vulnerable, not everyone can do that, yeah. And I understand, but for me, it kind of helped in my own healing journey, just to help someone and just to kind of speak out and say, Okay. Hey, well, this is what I went through. How can I help you? And you know, if you have any questions, you know, send me a message. Have people messaged you? Yeah, absolutely, all the time, really, all the time.

Nancy Barrow:

That's so encouraging I find. How important are breast screenings?

Nicole Marone:

Breast screenings are extremely important, of course, catching, you know, a breast cancer at a very early stage can dictate your outcomes, better outcomes, so to speak, what we've when we've done focus groups in the past is, you know, we've got other things going on. We've got, you know, we've got kids soccer, we've got them, you know, go to this event. We got to go to that. And it just is, it's another thing. It's another

Nancy Barrow:

And is baselines 40 now? thing.

Nicole Marone:

Yes, that's the recommended 40. However, if you have a history or you have any questions, you should definitely talk to your your physician about those concerns, because we do see it, of course, like Bianca at a younger age as well. So making sure that you really know what is your normal and do not ignore the signs.

Nancy Barrow:

Are there free mammograms that are available to the underserved communities?

Nicole Marone:

Yes, absolutely. Komen is, of course, here to support in any way between screening diagnostics. Sometimes insurance companies don't cover that if you have insurance, but Komen's Health Equity Initiative works to meet everyone where they are and empower them to take control of their health. So we're involved in communities across the country and have conversations in trusted ways, in native languages, and making sure that they you know that that women feel empowered. I do want to bring up as well, because you mentioned as well the black population, you know, black women are 40% higher to have a higher, higher rate of death than their white counterparts. And among Latinas, breast cancer is the most common form of breast cancer. So we want to make sure that just because you do not have the means doesn't mean that you don't have the access, right? It shouldn't determine where you live is what sort of access you should have. So making sure that we are here to support that, meeting them where they are. You know as well, we have a common worship and pink program that partners with churches and educates congregations, having breast health sort of folks go out and speak to congregations. So making sure we're getting into the communities, because not every community, there's sometimes there is a stigma within the community. And you know, you know in certain communities, you know taking off your clothes and being seen by a doctor is not acceptable within those communities. So making sure that we're meeting them where that where they are, and that they understand the importance of getting screening, and there shouldn't be a barrier just because you can't afford it.

Nancy Barrow:

So since 1982 Komen funded, like, 1.1 billion in research, and like, I think 2.3 billion in education. Do you feel that education is the key to treatments and a better diagnosis for women and men.

Nicole Marone:

Yes, absolutely. And that's sort of the DNA of what makes Komen, Komen. Is, you know, as an organization when we were, you know, sort of founded back in the early 80s. And I always like to say Susan G komen was an actual person, yes. Susan Goodman, yes, yes. And she unfortunately passed away from breast cancer. And you know, she had said to her sister, you know, it's a miserable experience having breast cancer, you basically are in a waiting room to die. And so we need to, you need to promise me that you'll make a change. And so as part of that, though, the research is a very big portion of we what we do. We are the second largest of funder of research, behind the US government for breast cancer. We also will always have this patient focus and making sure that we are really focused on being there for each one of you know, the breast cancer women and men that are going through their journey and making sure that we are very much focused on giving them what they need to do, being aware of their breast cancer journey, as well as, like I said, everyone else that's sort of affected by it.

Nancy Barrow:

How do guys find that? You know, because there isn't a mammogram, there isn't, like, a baseline screening for men.

Nicole Marone:

No, there isn't, unfortunately, and believe it or not, men have breast tissue. I hate, I hate to break it to you, but that's what it is. It does affect men with a lower percentage. However, usually it's very aggressive by time a man finds it, because it does have to become a lump, and usually at that they are very much dismissed in certain ways. So it tends to be more aggressive by the time that it is discovered. But again, knowing your health, knowing what's right, if something doesn't feel right in your chest, see your doctor, whether it's breast cancer or something else you know, put your mind at ease, because, like, I. Said, the earlier that you catch it, the earlier that you see it on a mammogram. You know, it doesn't have to be, you know this go to the extremes that actually, you know, there are many, many women that catch it very, very early on and continue on to have amazing lives,

Nancy Barrow:

Long, long lives. Tell me what Komen does for women who are diagnosed and they come to you.

Nicole Marone:

Absolutely. So first off, a lot of people go to our website, first come in.org, K, O, M, E N.org, there is a lot of information. In fact, it can be quite overwhelming, I believe, with the amount of information, but there is information there. We also have a patient care center. It is virtual, but our helpline is sort of the first go to for a lot of women going through breast cancer or questions, and our helpline can answer anything from what is breast cancer or help I don't know where to go, or, you know, like I said, psychosocial support. I have a spouse that's going through this or or I have, you know, a sister or a mother. So we have our helpline. We have, of course, the financial assistance portion that we talked a little bit about, as well as our patient navigation. So we have plenty of resources. And so we are able to work throughout the entire United States with throughout the entire New England. So whether you are in an urban area, suburban or rural area, all of these resources are available to you. We are here to answer those questions. We never want someone to get a diagnosis and feel that they are lost or they are alone because they are not we are here to make sure that we help them be weak, because we want to have less deaths, and we want to make sure that people make it through their breast cancer journey.

Nancy Barrow:

Yeah Bianca, how did you get involved with Komen?

Bianca Survivor:

It's funny that you say that actually my neighbor, Meg Staubley, she is part of Komen, New England. She's one of the coordinators and managers, and as I was moving into my new house, she we were just having conversation, and just kind of came up and I said, Wait, you work for Komen? And I'm like, she's like, Yeah, I work for Komen. I'm like, Well, I'm a breast cancer survivor. And she's like, shut up. No way. And so since then, she was able to kind of like, help me get involved with, you know, going to certain events and raising funds and starting my own walk, and just being able to advocate for breast cancer, and just given the space and that in the platform, just that to be here with you guys today. And so for me, that that relationship that I've built with her has been so amazing.

Nancy Barrow:

And immunotherapy, gene therapy, those are all pretty cutting edge stuff where you can use your own body to help heal your own body, which I find fascinating. Is that is that something that you guys are doing a lot of research on?

Nicole Marone:

Yeah, so our research varies. We have research that's focused sort of, you know, on certain populations, on certain sort of environmental factors, but a large part of our research right now is very focused on metastatic breast cancer. That is the breast cancer that you die from once you get to stage four metastatic and it's gone beyond the breast so we want to stop that first. That's what our focus is. Of course, the other you know, 30% of our research, of the billions that we spend is focused on other therapies, but we really need to stop the deaths associated with breast cancer and catch it early and making sure we are.

Nancy Barrow:

Are you doing advocacy with, like the state legislatures? Are you trying to pass any bills? Are you trying to do any of of that stuff?

Nicole Marone:

Yeah, so Komen also has an arm that we work on that's advocacy. And so we are constantly advocating for breast health, as well as joining other cancer organizations. So it's not necessarily breast cancer, because there are certain bills that you know, having combined voices. We have bigger, bigger voices. So we were just down in Washington, DC in early June, and I believe we had over 300 people attend, just going in and talking to each legislator, as well as we have different initiatives that we are constantly working at within each state, each state, even here in New England. So all six states, we have some sort of bill or initiative that we're working on to pass Bianca.

Nancy Barrow:

What advice would you give someone who might be recently diagnosed with breast cancer?

Bianca Survivor:

I would say 1,000% make sure that you have the right team of physicians, doctors, social workers, family support, and if you don't have family support, reach out. There's 1000s of survivors that are willing to help out. Like in my case, I had a friend that you know advocated with me and went to my doctor's appointments. Speak up. You're not alone. I think that that hits everything.

Nancy Barrow:

What are your hopes for October and breast cancer awareness month? Do you hope to come out of this?

Nicole Marone:

For us, it's always raising awareness. You know, I wish every month was October right? For me, working at Komen, it is. We never stop. However, October is an amazing opportunity to raise awareness. Get that mammogram, you know, if you've been pushing it off, do it Do you know, know your normal, you know, of course, raising funds is really, really important for us, but raising awareness is even more important. You know, like I said, if we can stop this disease, if we could end breast cancer forever, if I'm out of a job, I'm a happy person. Let me tell you.

Nancy Barrow:

I think a lot of people would feel the same way, not not wanting you to lose your job. But And what about what about you?

Bianca Survivor:

Bianca, I think I can agree with Nicole. I think it's just getting the word out there, motivating and encouraging others that you know have been diagnosed, or know someone that has been diagnosed or even just dealt with as a caregiver, just knowing that you're not alone, that you know, this fight is every day. You know, it's not just in October. It's every day. You know, I was diagnosed, like I said, in May, in the spring, two days before my 30th birthday, you know. So it can happen to one out of eight women here in Connecticut. So just getting the word out, you know, understanding that you know this is real and it's happening, and we just have to do our part.

Nancy Barrow:

Nicole Marone, the Executive State director of the New England Chapter of Komen and brave and wonderful, really great vibed survivor. Bianca. thank you for sharing your story and continued good health. To you.

Bianca Survivor:

Thank you.

Nancy Barrow:

Thank you both for being on the podcast.

Nicole Marone:

Thank you so much.

Nancy Barrow:

For information about Komen, you can go to Komen.org. The toll free helpline is one, 877, go Komen. That's K, O, M, E N, and it connects callers to services that they may need. For more information about Connecticut Paid Leave for breast cancer patients and caregivers, please go to ctpaidleave.org. This has been another edition of The Paid Leave Podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow, and thanks for listening.

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Nancy Barrow

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