This Is Woman's Work with Nicole Kalil - 161 / Survivorship and Breast Cancer with Virginia Carnesale

Episode Date: October 25, 2023

You likely know that October is breast cancer awareness month, and I’d be shocked if you don’t have someone you love, whether it’s YOU or a sister, mother, family member, friend, or colleague that has faced it. And like so many things in life, unless you’ve experienced it personally, at a deep and intimate level, it’s hard to know what to do, where to turn, and how to get the help – both medical, and otherwise – you need. It’s also hard for loved ones to know what to do, what to say, and how to support. I’ve invited Virginia Carnesale, breast cancer survivor and founder and CEO of Stage to join us today. In 2018, Virginia was diagnosed with breast cancer. Through her 18-month journey to wellness, she couldn’t shake the feeling that there was an opportunity to better serve other patients and their loved ones with the knowledge, sisterhood and style tips that can only come from those who have walked this road. So in 2022, with her very successful 20-year marketing and merchandising background with companies like Nike, Gap, and Saks Off 5th , she put her ideas into practice and launched Shopstage.co, a resource, support system, shopping and wellness destination to see women all the way from breast cancer prevention to deep inside her experience, with respect for, and recognition of, this uniquely personal journey. Prioritize your health above your busyness, get your mammograms, encourage the women you love to get theirs, support the research, volunteer, donate, do the walks, wear all the pink, and BE THERE for your people. Most importantly, let’s make sure NO woman ever has to face breast cancer alone. Like what you heard? Please rate and review by clicking here.  Join Nicole’s pod (to get all the inside scoops, free stuff, and the occasional rant), click here Connect with Virginia and Resources: Stage Website: www.shopstage.co  20% off your first purchase of $50 or more with promo code: workit20 IG: @shopstage.co FB: @shopstage.co  LI: @shopstage.co if you're a brand looking to partner with Stage or an Angel Investor and want more info, you can connect at [e-mail] or [e-mail]

I am Nicole Khalil, and I've been remiss in not covering this topic over the last three plus years, and I couldn't let another year go by without it. You likely know that October is Breast Cancer Awareness Month. You've probably seen the pink ribbons, and I'd be shocked if you don't have someone you love, whether it's you or a sister, mother, family member, friend, or a colleague who has faced it. It's the most common type of cancer with one in eight women diagnosed and the second leading cause of cancer death in women. And because death rates are generally declining because of early detection, there are over 4 million breast cancer survivors in the U.S. alone. We likely are or know

someone who has or will be impacted by breast cancer. And like so many things in life, unless you've experienced it personally at a deep and intimate level, it's hard to know what to do, where to turn, or how to get the help, both medical or otherwise, that you need. It's also hard for loved ones to know what to do, what to say, and how to support. So to honor those that have fought this fight, to encourage those who love and support these warriors, and to make sure we're all doing everything we can to make sure if it's diagnosed, it's diagnosed early, where the survival rate is about 99%. We are talking breast cancer awareness, survivorship, and finding your purpose through

adversity on this episode of This is Woman's Work today. I've asked Virginia Carnesale, breast cancer survivor and founder and CEO of Stage, a mission-driven marketplace, resource, and community for women with breast cancer to join us today. I'll also point out for those of you who haven't known me since I was 16 years old, how cool it is that we're doing this episode together. As Virginia and I went to high school together, we're on the same dance team and grew up together in our small Goleta community. In 2018, Virginia was diagnosed with breast cancer. Through her 18-month journey to wellness, she couldn't shake the feeling that there was an opportunity to better serve other patients and their loved ones with the knowledge, sisterhood, and style tips that can only come from those who have walked down this road. So in 2022, with her very

successful 20-year marketing and merchandising background with companies like Nike, Gap, and Saks Off 5th, she put her ideas into practice and launched ShopStage.co. Stage is a resource support system, shopping and wellness destination to see women all the way from breast cancer prevention to deep inside her experience with respect for and recognition of this uniquely personal journey. Having learned so much from other survivors during her battle with breast cancer, from what to expect physically and emotionally to what products mitigate side effects, Virginia wants to pay it forward for all women who may lack the same access to information and support that she had. Stage offers everything from interviews with medical experts to beauty and lifestyle tips

to a stylish product assortment that's treatment tested and survivor approved. Stage is a safe place where women can ask the questions, feel the feelings and find exactly what they need for the most important fight of their lives. No judgment, no fear mongering, just treatment with love. Virginia, thank you so much for being here with me today. It's so good to see you again. And I appreciate you having this very important and very personal conversation today. It's such an honor to be here, Nicole, and I can't wait to jump in. Okay. Let's jump in on the prevention side, because as I said in the intro, I think we all are hoping to continue to see this decreasing trend and support women and getting the prevention,

the care, the treatment as early as humanly possible. So what do you know now that you wish you would have known in your 20s or 30s? Yeah. So I was actually diagnosed at age 43 on my very first mammogram. So you can imagine my surprise when I got that information. I thought I was healthy. I thought I was living a, you know, a good lifestyle. And there was so much that I learned after the fact, only after I became a patient and that just didn't sit well with me. And it was, it's surprising, surprising, but not surprising things like persistent lack of sleep or years of sustained

stress, consumption of three or more alcohol beverages in a week. No one's having that conversation with young women in their 20s and 30s connected to breast cancer, right? Not breastfeeding by age 40 raises your risk for breast cancer. Being on the pill for more than 10 years raises your risk for breast cancer. Eating and drinking out of plastic and styrofoam containers, toxins and beauty products, pesticides in the food supply, and even EMF radiation that can come from your cell phone or microwave and other things. I just felt that once I started reading and really digging in on all these little environmental toxins and lifestyle choices that you're making every day, how they stack the odds against you and your body's

natural ability to fight off cancer cells itself. That was very frustrating to me. I felt a little bit like, oh, okay, the rug had been pulled out from underneath me, really. And it seems so silly, right? And of course, I'm not picking on any one of those things and saying those are the reasons why or that one thing is the reason why you got breast cancer. But if we had the knowledge at a younger age, we could make smarter decisions for ourselves. And listen, young people think they're invincible. They may or may not take my advice or, you know, the advice of their physician, but I wanted to find a way to make these points more mainstream knowledge for women. And that was the inspiration

in part with the blog on our site. So there's so much in that. A couple of things popped up. Number one, how often it is with things that impact so many women at such a high level that when we get into it, we're like, how come nobody's talking about this? So sort of a recency example is I'm going through perimenopause and I'm like, how is it that like almost every woman goes through perimenopause and I don't know anything about it? And so to that point, I think for in different ways, many of us can relate to the frustration of how do we know so little about something that's so big and impacts so many women at such a high level and how necessary it is for us to be talking about that. It also reminded me,

I'd read that statistic when I was thinking about not having kids in my mid thirties, about not having breastfed by the time I was 40. And I was like, it felt like another way I was being judged or punished for, you know, going against the societal norm. Thank you for sharing all those things. And thank you for reiterating that it's not like just this one thing is going to give you cancer, but to be mindful of the things that we can control. Exactly. So let's talk a little bit about your personal journey. I've found both personally and with so many women that I've interacted with that a lot of times the hardest things we've experienced in life, our pain or our struggle ends up turning into our purpose or our work or our passion. And obviously that is same for you. So can you talk a little bit about the journey from diagnosis and your journey to wellness

and also how it shifted you into stepping away from these big name companies that you were working with and starting your own business? As I mentioned, I was diagnosed at age 43, first mammogram, big shock. And of course, right away, I went into triage mode, you know, trying to tap into as many resources as I could. So I was the girl that met with four breast surgeons and nine plastic surgeons, because I wanted to make sure that I was comfortable with my outcome. And then also that I was getting the best care that I could. And it got me, it was my process. I got comfortable with what I was about to undergo, which was a double mastectomy.

And when I was initially diagnosed, it was classified as stage zero. And unfortunately, by the time we operated, the results came back that it was a high risk of recurrence and it had spread into my lymph nodes. So between the time of my diagnosis to the time of my ultimate surgery, which was about, you know, eight weeks, which is a little on the long side, but I got diagnosed right before the holidays. We didn't think it was as urgent to take care of. And when I say we, my treatment teams didn't think that it was. So it was kind of a surprise to everyone when we found out that it had spread. And so I had my surgery and then I got the tough news that I was high risk for recurrence and would need to do four rounds of chemotherapy.

And the recommendation was 10 years of tamoxifen, which is, for those of you that don't know, is a hormone blocker. So backing up, there are many flavors of breast cancer and the treatment paths and medications that you are prescribed are tailored to the flavor that you have, obviously. So the type I had strikes premenopausal women, and the younger you are when you're diagnosed, the most likely it is to come back within your lifetime. So what is counterintuitive is that they treat you the most aggressively. So even while they removed the cancer on my initial surgery, you know, they removed lymph nodes from my armpit. I got,

you know, a double mastectomy, as I said, the cancer was in theory out of the body, but they wanted to nuke it with chemo just to make sure they got any straggler cells that had been floating around my body. And then they wanted to put me on this hormone suppression drug for 10 years because estrogen feeds this type of cancer, right? So they want to keep you down at a certain level. So when you talk about perimenopause and all of that, I hear you girl, because it throws you into a medical menopause state. And, you know, the hot flashes are real, the night sweats. And, you know, you are thrown into it fast and hard and looking for any kind of relief

you can get. And I have a whole list of things that I could talk about on probably another episode. But yeah, so it's like that problem solving, right? As you're going through treatment. And the biggest thing was trying to maintain my mental state during this, right? I never once let myself think I'm not gonna make it. Life was just getting good for me. Early 30s, you're confident, you achieve a certain level in your career and

in life. And you're just thought, oh, hell no, this is I'm not going down like this. And you sort of bring that warrior energy to your fight. And, you know, people rally around you. So backing up, I had a family member pass away from cancer six months before I was diagnosed. So I had left my job and taken time off for the first time in 20 years, which was such a blessing because I got this news about my diagnosis during a time where I didn't have the demands of a huge team, a big company, a busy city life, you know, all of those things.

I had moved back to my hometown where you and I grew up in Goleta, California, and, you know, was figuring out my next move and starting to interview for jobs and all the things when this happened. And I firmly believe that the universe sort of puts you in the place where you need to be at the right at any given time. Right. And I can't imagine having gone through this experience without the love and support of people that I was able to have around me because I had come back to my hometown, I really craved moments of normalcy during this whole process. Even when I had, you know, Frankenstein hair falling out and, you know, a new wrinkle every day and thin lashes and all things, I just wanted to look and feel normal. And to the extent that you can be a distraction for her, like watch a funny movie with her. Like some, I had a friend bring me up over a whole stack of people magazines, just to

kill time. Right. I drowned myself. I had friends that came to visit and we drowned ourselves in reality television. It's just, just being there with her and letting her know that you care and checking in on her often is, is just such a blessing. And so, you know, I was so fortunate to have people in my life that were doing that for me during this time and chemo came and went, but I'll tell you like, you know, by the third

round, and I just, I almost feel guilty saying this because some women end up having to do umpteen rounds. So four in the grand scheme of things seems pretty easy, but by the third round, you're just looking for ways to, it's, it's so hard. You feel like you're stuck in place, right? Your life is on hold and your treatment team saying, this is what you need to do, but you don't really know if that they're going to come back and say, well, you know, you actually have to do it longer. So you're, you're having to kind of maintain your mental health during this challenging time when the world is moving on without you. And it's hard not to have the FOMO and seeing what people are doing professionally and personally on social media and whatever.

You got to just quiet the noise. And then I also just chose to lean into things like motivational podcasts or listening to even like faith-based podcasts and or, you know, finding programming like that on television. And like those things filled my mind with positivity. And I was very careful to edit the circle of people that I let around me on the regular because some people cannot help but tell you the sad story of the person

that they knew down the block who didn't make it. And guess what, people? That is not helpful. She does not want to hear that. Yeah. So I think there was a lot of good just life advice in there, let alone how to support and what the experience might be like for somebody going through it. And I know you said this before we hit record, and I think this is a good time to reiterate it here too, is not everybody wants the same type of support. Not everybody goes through the same experience or has the same needs. And I think as somebody who is in the supporting position,

if it's somebody you love, it's that fear of saying the wrong thing, doing the wrong thing, doing too much, not doing enough. I'm reminded of a podcast recording from a few months ago where, you know, she said, it's not helpful if we put the onus on the person who needs the support saying, I'm here if you need anything. It's like, yes, I like the here are three ways that I think I could help, which would be best, or I've brainstormed these ideas. Would this be helpful? So any other if you're speaking to the the supporter, friend, family member, spouse, loved one. Any other quick tips of what might be helpful to have in your mind and your heart and in your actions for somebody going through this? I mean, I think you nailed it on the head, like putting the onus on the person saying, I'm here for you if you need me, sometimes is even is more overwhelming to the patient than the opposite, because then it puts the onus on her to figure it out.

So I love the idea of someone maybe researching things that she might be needing or going through and offering in a way their unique expertise that might help them. Maybe it is, you know, they're really amazing at navigating the world of insurance claims, or, or maybe they are great at, you know, a plant based diet and recipes around that they can lend their expertise in that area. I mean, you can offer your flavor of support to her and then it's up to her whether she takes it or not. And I, and a hundred percent breast cancer is a very individual journey. You know, what works for me might not work for you and vice versa. And that is so true, both spiritually, mentally, but also physically.

And that's what's so crazy and elusive about side effects and navigating the world of mitigating side effects, right? And what I always tell patients is that you need to be vocal with your care team about what you're experiencing. And they have so many things at their fingertips to give you to try. And it may just be a supplement here or try this type of food or, you know, try acupuncture or the other things. You know, there are so many things that you can try, but you have to advocate for yourself

and you have to speak up. And, you know, I would say from a supporters and, and many of those things, it's really important for patients to speak to other patients, because there's a lot of things that you learn only from other people that have gone through it, that your doctor might not have thought to tell you about, or it's not like the course of what the regular of what they do, but this is your body. You have the right to ask your team, is this appropriate for me? And so I think for a supporter, to the extent that you can do a little bit of research about things that can help ease her burden during this time, that would be great,

but be careful not to offer her medical advice. Right. Yeah. And, and I think you somehow know best because of any other previous experiences. Cause as you said, each person is going to be different. Yes. And why is it that we like want to shove our advice all over people? I think there's so many, there's many parallels I think in I think, in motherhood and pregnancy, right? Everybody wants to give you advice about this or that or the other thing. And I think most of the time it comes from a place of good intention, right? Or people wanting to share their experience. But be very careful about the quick fix.

There is no quick fix. She can't just take some supplement and her cancer is going to disappear overnight. Right. And in fact, in the world of supplements, that is a very big, tricky statement, a very big, tricky thing. Companies market themselves with, you know, being great for cancer prevention, especially in the world of antioxidants. But it is hyper important during treatment during active chemo during active radiation, that people do not put other things in their body that their doctor didn't prescribe,

because in many cases, it counteracts the medication that they're taking. And, you know, I had people sending me like turmeric pills and, you know, which was very well intended, right. But cannot, cannot, absolute no, no, take that during active treatment. Right. And so, you know, part of that was a little bit of the inspiration behind the curation on our site because people want to support you, but they don't know how, right. I mean, I can't even, even count the number of gummy bear, like goodie, you know, gummy bears, chocolate, like you are avoiding sugar when you're going through cancer treatment. Those are not things that are

helpful. And so, like I said, that's part of the reason why, you know, we've curated the mix of gifts and things for, for patients on our site that we have. Well, and as a, somebody who's thankfully only been in the supporting position, your business and your website is a godsend because I do, I want to send a care package. I want to give them something that helps ease the journey, even the slightest bit. And I don't know. And there's an overwhelming amount of information out there. So to be able to go to a site like yours, where all of this has been tested and tried by breast cancer survivors going through treatment like that. I mean, even just to say, here's a gift card, get what you want. So, okay. We talked about the, the supporter side. I want to talk about the warrior fighter side of this. And I know there's no one size fits all, but what advice,

maybe one or two things would you give someone that has just gotten the diagnosis? Because as you said, that's maybe the most overwhelming time where you have no idea what to do. Take it one day at a time. It's a lot. And this is an individual choice, but I would say confide in a few trustworthy people so that you don't feel alone as you're going through this and be patient with yourself and be okay with doing a little bit less. You know, certainly as you're navigating treatment, I would say that's the biggest lifestyle change I took. I'm very careful

about where I place my energy. Now. I'm also very careful about, you know, going through a transformative experience like this, like the things that matter to you on the other side of this is a different list, right? It's a different way. It's like a parsing out of what really matters, which sucks when you're going through it, but maybe I'm not saying it's worth it, but it's maybe a silver lining or a positive thing that comes on the other side. Yes, absolutely. Absolutely. And, you know, we talked about some of this thing, this stuff before, but like do things to take your mind off your diagnosis, you know, give yourself a break because if you think

about it all day, all night, because sleep is hard to come by when you're, you know, facing this, um, this challenge, you know, that doesn't help you or your, anyone in your path. And so, you know, finding ways to unplug, finding ways of calm, like, and this may sound not cliche, but finding a meditation practice, finding like a journaling practice, like those are things that you can do to self-soothe that kind of can help you in, in this time. Yeah. So you've mentioned it a few times throughout. I guess my last question is how impactful or important based on your experience and interacting with other people is your mindset in this process? I mean, it's everything.

Listen, this is a very scary topic and people cope differently, but to the extent that you can keep your mindset in a hopeful and optimistic place, that will serve you in the long run, right? And whether not everyone can do that for themselves. And that other thing that I would say, which is hugely important, is there's a universe of resources. So say you don't have people in your orbit that can help you, or you don't want the people in your orbit.

You don't want to invite them in. There are amazing nonprofits in every city across this country and national ones that offer support and have mentoring programs, buddy programs, like the American Cancer Society has a reach for recovery program where they partner you up with another survivor. There's a young survivors organization called the Breasties. They're doing amazing things. They have an app where you can, you know, post and make friends and lots of community meetups. And, you know, we work with an organization called Unite for Her that does free nutrition counseling, you know, free integrative wellness therapies, but there are law nonprofits in your community and talk to your cancer center about what resources are right at your fingertips. It can feel super overwhelming to try to navigate this and figure it out for yourself, but they're, they're there for you. And then the other thing that I would say that I didn't mention earlier, I took advantage

of the free services, the free social services at my cancer center. And I never thought that I, you know, I would find myself doing it, but it helped me so much because these people are trained. They talk to cancer. People go navigating cancer all day, every day. They have the right words to say and, and can give you tools to effectively navigate conversations with loved ones around you. So I would say just don't be afraid to reach out because there is a wealth of support that is out there for

you if you just grab it. Yeah. Thank you for saying that. Thank you for being here today on this episode and just in life. Thank you for being here today. It was so good to reconnect. So, so great, Nicole. Thank you so much for this opportunity.

My, my absolute pleasure. Okay. If you or anyone you know has been impacted by breast cancer, please go to shopstage.co. We'll put it in show notes along with Instagram, Facebook, and LinkedIn at shopstage.co. You can find and follow Virginia's company anywhere. There are customer care reps that are also survivors that are standing by to answer questions. And Virginia's generously offered a 20% off your first purchase of $50 or more if you use the code WORKIT20. W-O-R-K-I-T 20. We'll put it in show notes as well. Thank you.

Thank you. Thank you. And let me end by saying this. The reality is that there are some health issues that are specific to women, some that affect women more commonly or differently. And there are still many women's health conditions that go undiagnosed and many drug trials that don't include women as test subjects. All that to say, we have a lot of work to do as it relates to access and quality of health care,

especially when we look at women living below the poverty line and women of color. Literal lives are depending on this. So prioritize your health above your busyness. Get your mammograms. Encourage the women you love and know and interact with to get theirs, support the research, volunteer, donate, do the walks, wear all the pink, and be there for your people. Most importantly, let's make sure no woman ever has to face this alone. This is woman's work.