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Breast Cancer affects 1 in 8 women
A staggering statistic when you consider it –– especially as a disease that affects women at such a high rate. And because of systemic inequiality, women of color are less likely to be diagnosed early, leading to diagnosis at later stages.
We wanted to learn more about this form of cancer, and better understand how we can make choices in our day to day lives to lessen our risks, advocate better for our health, and support those in our lives who recieve a Breast Cancer diagnosis. So we sat down with Dr. Stephanie Graff, the directs of the Breast Oncology Program at Lifespan Cancer Insitute to learn more.
Beyond sharing from a clinical perspective, we reached out to three women to share their stories with Breast Cancer. In the episode you’ll meet Marissa Thomas, Paige More, and DeeDee Gilchrist –– all who have been touched by Breast Cancer in some way. They vulnerably share their journeys, as well as the organizations and resources they’ve built for survivors, previvors, and carevivors.
Learn more about each of these women below, their incredible stories, and support their organizations. Pink Washing is a real phenomenon, especially in October –– and though awareness is important, your dollars go further in the hands of these organizations than from buying a pink pin or tee.
What you’ll learn:
What Breast Cancer is and the risk factors most highly associated with it
What your treatment options are, especially if you do not have the financial means to seek care
Why “Pink Washing” is so harmful, and what to do instead
How to advocate for yourself and your health with your doctors
Breast Cancer Resources:
Tori Dunlap (00:00:00):
Hello, Financial Feminists. Welcome to the show. Excited to see you, as always. Today is going to be a slightly different episode. As you may know, October is Breast Cancer Awareness Month, and it is unfortunately a disease that affects so many people, but specifically women. Whether someone has been diagnosed with breast cancer or you are a loved one of someone who has been diagnosed. Now, this episode is so hopeful and really inspiring and so important. So if you heard the C word and you’re like, “Nah, I’m out,” I totally get it if that is triggering for you. If it is something that you want to learn more about and really leave feeling hopeful about, please do listen to this episode. It is incredibly important, and especially to share with loved ones. We have several members of Financial Feminists in the HFK team who have loved ones and friends with breast cancer and we wanted to talk with both experts and advocates to share their stories alongside some important information and resources about breast cancer.
So you’re going to hear from a few people in this episode. First, you’re going to hear from Dr. Stephanie Graff. Dr. Stephanie Graff, Medical Advisor at Dr. Susan Love Foundation is a Breast Oncologist and Director of Breast Oncology at Lifespan Cancer Institute at Brown University. She not only sees patients regularly and has tremendous knowledge within the breast cancer space from a medical and patient perspective, but is also a part of breast cancer research. She’s an incredible resource to survivors, previvors, and care-vivors, and answered our questions about breast cancer myths, treatment options, costs, and more.
You’ll also hear from three other women today. Marissa Thomas, Paige More, and DeeDee Gilchrist who share their stories with breast cancer and about the organizations they’ve built and supported. We’ll link more about their stories and the organizations in our show notes.
This is an incredibly special and important episode. It’s full of resources and information about breast cancer, but also about advocating for your health as a woman and why it’s important to do that as soon as you can. Let’s go ahead and get into it.
You look fantastic.
Dr. Stephanie Graff (00:02:09):
Tori Dunlap (00:02:10):
Dr. Stephanie Graff (00:02:10):
I’m wearing a dress.
Tori Dunlap (00:02:10):
It looks great.
Dr. Stephanie Graff (00:02:10):
Tori Dunlap (00:02:13):
I love the floral. It’s very Spring.
Where in the world are you located?
Dr. Stephanie Graff (00:02:18):
I am in Providence, Rhode Island. I’m at Brown.
Tori Dunlap (00:02:21):
I love Rhode Island. It’s beautiful. I visited a couple times with family and it’s really lovely. It’s one of my favorite New England spots.
I’m just going to dive right in. What do you feel like are some of the most damaging myths that people have about breast cancer and what happens when folks unfortunately believe those myths?
Dr. Stephanie Graff (00:02:46):
Oh gosh. Where to start? I think that there’s all different sort of directions we can take with that. There’s myths about treatment, there’s myths about screening, there’s myths about risk factors. I’ll just tick off some from each category. First, from risks about how you get breast cancer, I think that the most common perception or myth that I hear is that family history is the number one risk factor. And that is simply untrue. Only about 5% of breast cancer is genetically mediated, which means the vast majority of people who are developing breast cancer, it has nothing to do with their family.
Tori Dunlap (00:03:35):
That’s something I believed so I’ve already learned something.
Dr. Stephanie Graff (00:03:37):
Right. Yeah. The two biggest risk factors for breast cancer are being a woman and getting older. And I’m sorry to tell you, you’re probably not going to change those two things. Arguably, you could, but probably not going to. I think that that’s it. In the United States, other risk factors are far and away bigger things. Obesity, alcohol consumption, hormone replacement therapy are huge risk factors for breast cancer. And we all just walk around believing that if our moms didn’t have it, we’re not going to have it. That’s number one.
Screening. I think that a lot of people believe that there’s some magic age where you can stop. Again, breast cancer is a disease of aging, and so our odds of developing breast cancer, so for all comers, the risk of developing breast cancer is one in eight. One in eight women will get breast cancer in her lifetime, which is your group of friends. That’s your mom and sisters and aunts. One in eight women are going to get breast cancer in our lifetime. But when you break it down and look at age groups, for 50 year olds, it’s one in 42. Out of all women in their 50s, one out of every 42 women in their 50s is going to get diagnosed with breast cancer. But when we move it up to women in their seventies, it’s one in 14.
I think that a lot of people think that, “Oh, well I’m past that. I’m not going to get it.” And I’m sorry, if you’re still healthy enough to be out walking, talking, shopping, doing your own stuff, you’re healthy enough to keep doing mammograms. Now, if you’re in a nursing facility on oxygen, needing two people to transport you, do you need to keep doing mammograms? Maybe not. But otherwise, I think that there’s no age that you get to use a get out of jail free card.
Myths in terms of treatment, unfortunately, there’s still a small population of people that think that they’re going to be able to out health their cancer without traditional medicine. And I’m sorry, I have yet to meet the person who was so blazingly unhealthy, right? I have yet to meet the person who was wholly consisting on cigarettes and Oreos and who is going to all of a sudden 360 their lifestyle and not need treatment for their cancer. Because the truth is, is that you weren’t so unhealthy before and you still just got it. It’s a disease of bad luck for the vast majority of people. And so I think my message there is that you can’t out diet, out exercise, clean it up and magically not need traditional treatment for your cancer diagnosis.
Tori Dunlap (00:06:53):
Yeah. It wasn’t breast cancer, but one of my best friends, my oldest friend, her mom died of cancer a couple years ago. Oh gosh, it was probably seven or eight years ago now that I think about. It seems like it was just yesterday. And yeah, she was one of the healthiest people I knew. And it was just, yeah, to your point about luck, it has nothing to do with her health. It just happened.
Dr. Stephanie Graff (00:07:12):
And that’s not to say that health doesn’t have a role. Right? I definitely think people who exercise regularly and follow a good healthy diet and stop drinking and stop smoking have
better outcomes and feel better as they go through treatment and on and on and on. There are clear health benefits to tons of stuff. There’s lots of supplementary health measures that we add to traditional therapy, things like acupuncture, that improve outcomes. It’s not to say that we can’t add those things, but those are not a replacement or a cure.
Tori Dunlap (00:07:53):
Right. You were talking about specific ages. Are there racial disparities in diagnosis or in treatment?
Dr. Stephanie Graff (00:07:59):
Yeah, stark racial disparities.
Tori Dunlap (00:08:02):
I figured as much. Yeah, unfortunately.
Dr. Stephanie Graff (00:08:06):
Yeah. After adjusting for everything else, gender, age, stage at diagnosis, because Black women are more likely to be diagnosed at a leader stage, even when you correct for all of that, the likelihood of dying of cancer for a Black woman compared to a white woman is 33% higher. And when you look specifically at the five year survival for breast cancer, not just cancer in general, the five year survival for a white woman with the diagnosis of breast cancer is 91%, and for a Black woman, it’s 82%.
Tori Dunlap (00:08:44):
Dr. Stephanie Graff (00:08:45):
Tori Dunlap (00:08:46):
Is that lack of treatment, lack of funds? Do we know what that is?
Dr. Stephanie Graff (00:08:52):
That is everything. And I would love to tell you this is the magic thing, because then we would fix that.
Tori Dunlap (00:09:01):
Dr. Stephanie Graff (00:09:01):
But it’s not.
Tori Dunlap (00:09:02):
Can we fix systemic racism on this podcast?
Dr. Stephanie Graff (00:09:05):
Right. Exactly. And that’s what I was just going to say. That is systemic racism. That is barriers in care. That is implicit bias. That is some access issues. That is all of the other forms of systemic racism. Right? That’s pay disparities. That’s health inequalities. That’s delays in diagnosis. It’s endless.
And honestly, it’s research too. When you look at the clinical trials that have laid the foundation for how we treat breast cancer, 85, 90, 95% of the volunteers that have participated in the clinical research that said this is the treatment of breast cancer were white women. And so men with breast cancer, Black women with breast cancer, Latinas with breast cancer, et cetera, are underrepresented. And so we need to do a better job getting people who don’t look like me enrolled into clinical trials.
Marissa Thomas (00:10:18):
My name is Marissa Thomas. I am currently 42 years old and I am about seven years out from my diagnosis of breast cancer. What I knew about breast cancer beforehand, that mostly older women over the age of 50 were diagnosed with breast cancer. And for the most part, that was it. I didn’t know that there were different types of breast cancer. I didn’t think anybody at my age, I was 35 when I was diagnosed, I knew that there was probably a few women, but not as many as I’ve met over the last couple years.
I worked in healthcare. I recently switched ca
reers, but I worked in healthcare for a while. I had been around women who had found lumps, been diagnosed, things of that nature. When I found my own lump, I had known that something was obviously wrong. I had a child, but he was about 12 years old at the time. It’s not like I was just breastfeeding him at that time and could possibly have a lump or anything. Once I had found the lump, I knew that something was probably wrong.
I went and seen the primary care doctor that I used to work for because she could get me in sooner because I wanted it to be evaluated as soon as possible. And I actually seen one of her nurse practitioners and they said, “Oh, it could probably be a cyst, but we’ll get you in.” They got me in the next day for a mammogram and ultrasound. And the ultrasound tech actually had said to me, “Oh, this is breast cancer,” before I even had an actual diagnosis. And I remember asking them, “Why did they think that?” And they just said, “Where the lump that you have, if the surrounding areas around that are smooth, then that usually just means that it’s benign. But if it looks jagged and ragged along the edges of the mass, then that’s usually an indication that it’s malignant or cancerous.” And so that was on Wednesday. And then about two days later, I had the biopsy that Friday. And then the Monday, the primary care doctor that I used to work for had called me and gave me the official diagnosis.
I actually have a genetic mutation called Lynch syndrome that I inherited from my dad’s side. And a lot of the people on my dad’s side of the family, a lot of his siblings have had some sort of cancer. I’m the first one to have breast cancer, but they’ve all had different types of cancer. And so that was necessarily on my radar, but not necessarily breast cancer.
A lot of my patients that I worked with in healthcare, I helped them with things of this nature, of getting prior authorizations for medications or procedures. I was pretty familiar with that. I guess one of the biggest things was just the cost of fertility treatments. If you’re diagnosed that young, the one thing that your medical providers should be recommending is that you do some type of fertility treatment like freezing your eggs or creating embryos before you start treatments just because there is a high indication that if you go through chemo that you’re just going to stay in menopause for the whole time and not necessarily go back into premenopause or having your periods again. Some women do, but it’s still a lower rate of whether or not you would be able to get pregnant again or not. Just the cost of fertility treatment, it’s very expensive. Just from actual retrieving of the eggs and then actually storing them or storing the embryos. That pretty much definitely floored me for the most part.
I currently have to get alternating mammograms and MRIs every six months. And so that’s really expensive regardless of whatever your deductible is. It eats up some of it, but there’s still a lot of out of cost that the patient has to take care of. That’s really expensive. And then just the follow up care with my genetic mutation, there’s different types of testing that I have to get regardless of my age. And so that’s just a really expensive process.
My organization is called For the Breast of Us. It’s an online community for all women of color who have been diagnosed with breast cancer. It was created by myself and my co-founder, Jasmine Souers, as we both realized that there wasn’t necessarily a community for all women of color. There were communities for white women or there were communities for older women or older just Black women, but we specifically wanted to make sure that we had a community for all women of color. As when I was diagnosed, there were no communities like that. Most of them were in person. I didn’t want to go in person necessarily. And most of the in person groups were of older women. And a lot of the women that I was meeting online, they were women of color and they were young like myself. And so it’s like, “Okay, well why can’t we create this community where women could share their stories and experiences and then also connect with each other?” And so that’s where For the Breast of Us was born.
There’s Touch BBCA. They have a program right now called When We Trial where that is to get more Black women participating in clinical trials. That’s a really big focus of For the Breast of Us, is having all women of color participate more in clinical trials so that we can learn more about breast cancer and then also eventually stop more women like us being diagnosed with breast cancer. They’re a great organization. They also hold Facebook lives, like we do, about different topics that are affecting the women in our community.
Another organization would be Living Beyond Breast Cancer. They have some great financial resources. They have a really good advocacy program as well. And I just love some of the work that they’re doing too. Besides just it pushing into my own advocacy, it’s also just wanting to give those tools and resources to other women who share the same experience. As it always is, making their experience easier than mine, but just making sure that they have the tools to make it easier for them just to navigate in general. And I think that my cancer diagnosis also changed the way how I view the world in terms of tomorrow’s just not promised to any of us. And so just living my life day to day, doing the things that I want to do without having any regret.
It affects a lot of us under the age of 40, more than we would probably like to hope or imagine. A lot of the resources that are available to the general public aren’t available to women of color. We’re having to search harder and harder for those. And that’s another reason why For the Breast of Us is here, to make sure that women of color have access to those type of resources and programs so then that way they can benefit in some of these programs themselves as well. And just that there are different types of breast cancer, that just because somebody’s diagnosed with breast cancer doesn’t necessarily mean that their path may be easier or that it’s just breast cancer. Everybody has a different treatment plan depending on the type of breast cancer that they have. And that unfortunately more and more women are being diagnosed younger and then they’re also being diagnosed metastatic. And being diagnosed metastatic could look different and be different for all different types of women, but making sure that they have the collective resources and that we’re helping to elevate their voices as well.
I would say just that there are organizations like mine, For the Breast of Us, that are out here that are doing the work. It’s important to elevate that and make sure that women know of these resources that are out there to them, whether it be that they’re just reading some of the stories that are on our site to connect with some of those women or joining our private Facebook groups so then that way they can learn a little bit more about their diagnosis or ask type of questions.
And the biggest thing is just advocating for yourself. Whether you’ve been diagnosed with breast cancer or not, you are the only one that knows your body and knows what you’re going through. And so being able to advocate for yourself and not be afraid to use your voice is the biggest thing.
You can find me on Instagram at marissadt28. For the Breast of Us, you can find on Instagram at forthebreastofus. Also, we have a Facebook page. If you just look up For the Breast of Us, we’re there. If you are a woman of color and wanting to find a safe place, we have a private Facebook group called Breast Cancer Baddies. If you just look for that and then request to join and answer the questions, we can let you into that space as well.
And then of course we have our website, which is breastofus.com. We have over hundreds of stories written by real women who have been affected by breast cancer and some of their caregivers. I would encourage everyone to take a look at those.
And then newly, we also have a podcast called Baddie 2 Baddie and you could take a listen to that. That is thrivers like myself in the community who are talking about everything from dating, navigating the healthcare system. And then even just recently, we have a new episode coming out specifically for Hispanic women who have been diagnosed with breast cancer and what that’s like, them navigating the system too.
On Saturday October 15th in Houston, Texas, we are hosting our inaugural sneaker ball called the We Run This Gala. It is open to everyone, not just women of color, who have been diagnosed with breast cancer. And it’s just a night to celebrate the women in our community who have been affected by breast cancer, those that are helping to advocate and educate within the breast cancer community and then also honor the women who we have lost within the community as well. It’ll just be a great night of fun, dancing, food, and then learning a little bit about For the Breast of Us and some of the honorees that we have of that night as well. And it’s a sneaker ball, so you get to dress up as much as you want to, but you also get to put on your tennis shoes.
Tori Dunlap (00:20:58):
You had mentioned some of the financial factors, and obviously this podcast is called Financial Feminist, so what kinds of financial factors are keeping women from getting diagnosed sooner?
Dr. Stephanie Graff (00:21:12):
I just moved, so I just had the privilege of trying to find a primary care doctor in a new place as a physician. As a physician with the very best health insurance, married to another physician with a network of physician friends, and it was hard. I would say one of the biggest barriers to timely diagnosis is access to primary care in our country. Primary care doctors are overwhelmed. A lot of primary care is provided in emergency departments and urgent cares around the country where they may not be focusing on cancer prevention. They may be lucky to focus on blood pressure control and are more likely focused on the problem that you’re there within this moment, which is substandard. And so I would say the number one barrier is just access.
We’re lucky in that a screening mammogram does not require a physician order. You can walk in for a screening mammogram or schedule a screening mammogram without a physician order everywhere in the United States. You do need to have a physician’s name that’s going
to get that report. You need to have somebody that you’re going to send that report to, which can be your gynecologist, it can be your primary care physician. If you have another chronic health condition that you see somebody regularly for, I have patients who see their diabetes expert or their rheumatologist or their psychiatrist, send it to them. Go get it, just send it. I think access is the thing, but because of the way that a screening mammogram works, that’s your foot in the door. And then if your screening mammogram is abnormal and you need another step, and let me just pause right there and say don’t flip out, it’s probably nothing.
Tori Dunlap (00:23:23):
My mom had one and she was fine.
Dr. Stephanie Graff (00:23:24):
Yeah. If your screening mammogram is abnormal, then you’ve got the full resources and support of your breast imaging center to get you the care that you need. Because if the primary care doctor or whoever you wrote down that got the report is like, “Listen, I haven’t seen that person in three years. I don’t know how to deal with this,” that imaging center is going to say, “Listen, this is the breast surgeon, this is the medical oncologist, this is the whoever that we work with all the time. Why don’t you just go talk to them and let them take this ball and run with it and it will happen.” That’s something that we do all the time here in cancer land, even for people that ultimately end up not having cancer.
Tori Dunlap (00:24:20):
One of the things that I’ve discovered kind of anecdotally, and I’m sure there’s data to back this up, is going to the doctor, going to the dentist, all of these things are very uncomfortable and very scary. And so I think we avoid them. Actually, my friend, my friend’s mom who died of cancer, she was having, I think it was back pain, pretty severe back pain for six months, a year. And they caught it later than they should because it was just, “I’m a busy person, I’m not going to go to the doctor. Oh, it’s probably nothing.” And also, if it is something bigger, I almost don’t want to know because then of course I have to deal with it.
Dr. Stephanie Graff (00:24:56):
Tori Dunlap (00:24:58):
I’m sure this is common. I’m sure you see this. How can we be more comfortable potentially either getting bad news or at least just going to the doctor and doing our checkups?
Dr. Stephanie Graff (00:25:15):
Yeah. Gosh, I wish I knew. Our health is scary, right? Our body and our autonomy over our body is our right as an adult. And so to feel like you’re not in control of it is terrifying. And I guess what I say to patients all the time is that information is power. If you’re afraid to the point of inaction, you’re already afraid, just take the step to find out the whole truth. And then statistically speaking, it’s nothing. You’re going to get to stop being afraid. But then if it is something, if you’re the iota of a microscopic chance that you end up in my world, then you have the knowledge and information and power to know that you’re at least worrying about the right something.
But to the same point, maybe this is another myth. We, doctors, healthcare providers, are not mind readers. Okay? One of the most powerful tools in our healthcare tool set is something called a review of systems. Where I say, “Hey, how are you feeling?” And you say, “Hey, my back’s been hurting for six months.” I can’t walk in the room and look at you and know your back’s hurting. I don’t have those powers. Okay? Maybe some doctors do. I don’t. That wasn’t given to me when I graduated from medical school. I have no Harry Potter wand over here.
If you’re worrying about something, say that. Say, “Listen, I’ve really been worrying about this back pain because it’s been waking me up at night. It’s been there for six months and it’s not getting better.” And when your doctor says, “It’s probably nothing,” don’t say, “Oh, okay.” Say, “How can we know that for sure?” Or just ask any follow up question. Just say, “Okay, I hear you reassuring me, but I’m telling you I’ve been scared. This is me saying I just need a little bit of follow up on that reassurance,” because that’s a really nice red flag for your doctor that this is a serious complaint.
Tori Dunlap (00:27:51):
Dr. Stephanie Graff (00:27:52):
I sometimes go to my doctor and I’m like, “Oh yeah, I’ve got this pimple or this whatever.” I’m totally healthy and normal and not worried about something and I just feel bad. I’m there for a normal checkup and I feel like I should talk about something. And my doctor dismisses it all, and that’s fine, because I don’t actually have any problems, but sometimes it’s something that I’m actually worried about and I need them to pay attention to it.
And so ask a follow up question.
Tori Dunlap (00:28:24):
Yeah, and I think back to your point earlier, I think women, especially, we know women of color, will vocalize things in a doctor’s office that are often either not believed or not followed up. I have another good friend who was just diagnosed with endometriosis and she’s had endo for years but didn’t know it because couldn’t get the diagnosis for it. Any more of those sentences or things that we can do to advocate for ourselves? And at what point do we know, “Okay, this is not the right person, this is not the person who’s going to take what we’re saying seriously so we need to find somebody else.”
Dr. Stephanie Graff (00:29:00):
Yeah. I definitely think that there’s all sorts of examples of isms. Biases and isms. Ageism, racism, et cetera, that stops us from listening, hearing, being heard, speaking up, advocating for ourselves. The two sides of it. I also think that there are both cultures and age groups that have a problem questioning authority. And so if your doctor’s initial reaction is, “Yeah, yeah, yeah,” there’s no follow up question because you would never question your doctor. And I’m here saying question your doctor. Ask a follow up question if it’s something that you’re worried about, just so that your doctor cues back into this as a concern to you.
I think the singularly most important thing with any healthcare provider, and in this particular sentence, I’m using the phrase healthcare provider in the broadest possible sense, your psychologist, your alcohol rehab counselor, your massage therapist, your chiropractor, your physical therapist, your physician, your dentist. I don’t care. Anybody who is touching your body, you have to be comfortable communicating with them. And if you’re not, they are not your person. Okay? I don’t even know an example. If your babysitter, housekeeper, mechanic, waitress at the restaurant didn’t listen to you or treat you with respect, you wouldn’t go back there. You are not trapped in your patient-physician relationship forever. There is nothing wrong with getting a second opinion. And earlier I had said how hard it is to find a primary care doctor. Just ask friends, ask neighbors, ask people in your faith community, ask people who they have felt listened or heard by.
Tori Dunlap (00:31:07):
Totally. Yeah. You know your body better than a doctor, even though the doctor’s the expert. You know your body, what’s going on in it. And learning to listen, not only to your body, but then advocate for your body’s needs, I think unfortunately is an art that we’re all trying to figure out how to be better at.
Paige More (00:31:29):
My name is Paige More. I am a previvor. I’m 30 years old. A previvor is someone with a predisposition to cancer, somebody with a family history, somebody who’s taken preventative action, somebody who has gone through genetic testing and found out that they have a predisposition. Or like I said, somebody who just has a family history of cancer and is doing screening, monitoring, something like that. So it really is an all encompassing thing. It doesn’t just mean somebody who has had surgery, preventative surgery, but somebody who is taking preventative steps to really understand and know their risk.
Before I found out that I carried the BRCA1 genetic variant, I knew that cancer truly impacted families in so many ways. My entire paternal side of my family has been impacted by both breasts and gynecological fit cancers. I lost my grandma to ovarian cancer when I was really young and she lost her mom to breast and ovarian cancer, her sister to breast and ovarian cancer. The BRCA gene really deeply impacts my entire family so much.
I can’t say that I knew a lot about cancer specifically. I didn’t understand that we had so many options when it came to treatment. I didn’t understand that we had so many options when it came to surgery. I really thought that there was really one direction when it came to you get diagnosed and then this is it, because I think oftentimes that’s how our doctors presented to us. What I’ve learned since I went through genetic testing is that, one, there’s not just one gene. There’s not just the BRCA gene. There are so many different genes that we should be testing for so make sure when you’re going through genetic testing, you ask for a full panel. That is the first hot tip of the day. I think so many people think, “I don’t have the gene, so I’m good.” And you might be good, but you should definitely ask your team for a full panel when you get genetic testing.
I didn’t know that either until I went through this, but I also didn’t know that I had options. When I went through my preventative mastectomy at 24 years old, I thought that there was only one way to do it, and now I know that there are so many different options for us. And so my next hot tip for the day is to ask questions. When somebody tells you that this is the way that they want to do it for you, especially when it comes to your body, understand why. Ask, “Is this the only way or is this the only way that you know how to do it?” Because we are in charge of our bodies, we are in the driver’s seat, and I think that we deserve to know that we have options. We deserve to know that we have choices. And we are the only ones that know what is best for our bodies and that we get to make those choices for ourselves based off of what is best
for our life.
So when I was 22 years old, I underwent genetic testing and it really was because my mom is kind of the shero of the story. After realizing that I had this intense family history of both breast and ovarian cancer on my paternal side, my mom was like, “There has to be something here. There’s no way that all these people on your dad’s side of the family just have this much cancer.” And so I think that if that is you listening in, if you have a lot of family history of cancer, you should definitely go to a genetic counselor or to your PCP and ask, “Is there a test that I can go through?” Ask for genetic testing, advocate for yourself, because that’s something that I think helps so many, especially when you have a strong family history of cancer.
What happened was my mom really encouraged my dad to go through genetic testing. Something a lot of people don’t know is that you can get the variant from your mom or your dad. It’s not just on your mom’s side of the family. And so my dad tested positive for the BRCA gene, and I like to say it’s kind of this Oprah moment, but instead of, “You get a car, you get a car,” which is very exciting, it was, “You get a test and you get a test.”
We just all got tested and I ended up being positive. I was 22 years old. I had just landed my dream job working for Good Morning America. I was living in New York City and I had my entire life ahead of me. And when they told me that I had an 87% chance of developing breast cancer, all of that came crashing down. I felt so alone, so afraid, and I didn’t really understand what that meant. I remember looking down at my body for the first time that night when I went home and feeling like, “I don’t recognize myself anymore. I don’t feel like myself.” I felt like I had two ticking time bombs on my chest that could explode at any moment. And I knew that I wanted to take action. I knew I wanted to do everything I could to prevent getting breast cancer.
And so at 24 years old, I decided to have a preventative mastectomy, reducing my risk from 87% to below 3%. Your risk is different for everybody so talk to your team about what your risk is. I’m not a medical professional. I’m just your Breastie. It was really challenging at the time. This was 2017 when I underwent my preventative mastectomy. Social media is not what it is today. People were not sharing their stories on Instagram like they are now. TikTok wasn’t a thing. I felt so alone and so afraid because I really couldn’t find anybody around my age that was posting photos of their scars, that was posting just your everyday video, feeling empowered and strong and brave, that made me feel like I could go through the surgery and just be okay and feel like myself again.
And so I felt like I had to share my experience because I have a younger sister who hadn’t been tested yet. She’s 11 years younger than me. And I just felt like I never wanted her to go through this experience wondering, “Am I making the biggest mistake of my life?” Because I felt like that at times. I never wanted her to go through this experience feeling, “Am I going to completely hate my body? Am I going to hate my scars?” All of these things.
And so when I went through my surgery, I remember looking down at my scars and feeling so empowered and so strong and actually really sexy. And I loved my scars. And I just wanted other people to know that they too could go through this and feel the exact same as I did. And I remember sharing my first post on Instagram. I was so afraid. I felt like, “Oh my gosh, what are people going to say?” Because it was really vulnerable. It was unlike anything I’d ever shared. And I was a TV producer for a reason. I wanted to be behind the camera, I didn’t want to be in front of it, but the response was unbelievable.
And I think what was so powerful was that it wasn’t just previvors who I was able to connect with and relate to around the world. It was survivors, it was thrivers, those with stage four breast cancer. And it was care-vivors, those who care for people that have been impacted by cancer. And so we created this incredible community online and we were sharing our stories with each other. And more and more, as I was posting my story and sharing photos of my scars, I was sharing photos that were really empowering and kind of sexy. And just the photos that I so badly needed to see before my surgery to know that I’m going to be okay, that I’m going to love my body again with time. It takes time. And the more that I posted photos like this, I realized that community members were also sharing photos like this. And it really created this movement of feeling like we weren’t alone. We were all in this together and it was okay. It was normal to post photos like this. It was normal to see photos like this and we needed that.
And so it was unbelievable because the community really came together for the first time. Before this, survivors were over here and previvors were here and thrivers were here and caregivers were supporting us, but there wasn’t a place for us to all come together. And the Breasties is the first time that we all came together. And something that I think you’ll really enjoy is that I started posting on Instagram saying, “I’ll be at this place at this time,” because I remember feeling like, “Why do I get all these Breasties? Why do I get all these friends when we all deserve to come together and come together in person?”
I remember I so badly wanted to meet people in person. And like I said, it was completely separated. And so I remember trying to find something where we could all come together and learn from each other, but at the time, it was so separated. And so I could only find a previvor meetup. And I was like, “Okay, great. I’m going to go to this previvor meetup and I’m going to meet other people just like me. I need that community.”
And so I went to the previvor meetup and it was awful. It was a very sterile conference room with Chex mix on a styrofoam plate. And there were barely enough snacks to go around and we could barely have our voices heard over some in the community because many were invalidating our experiences telling us that we were too young to be there, that we didn’t have to worry about this, and sharing awful stories about just how many had lost their jobs, because the rules and the laws had been different at that time, had lost their jobs by sharing this with their bosses and how many had lost their partners because they couldn’t handle the scars and the experiences. And it was a lot.
And I remember many of us looking around the room being like, “This environment is not conducive to creating a really empowered community that feels good for us.” Yes, this experience is extremely hard and we need to be real about what it really feels like to go through this, but there also is joy to be had still and a lot of celebrating of life. And you can’t really celebrate life that much in a conference room with Chex mix on a styrofoam plate. And there has to be more for us out there and there just wasn’t.
And so I started posting on Instagram, “I’ll be at this place at this time, come if you can.” And it started really small. “Come to this brunch spot.” And at first, it was 12 Breasties showed up. And then it was, “Come to this spin class,” and I would kind of barter with these brands or these companies. And this was before brand marketing was a thing. “If I post on my Instagram, will you exchange 30 bikes for 30 Breasties to come for free?” Because everything had to be free. That was so important to me. And they said yes. And I was like, “Wow, we’re really onto something here.”
And so then I joined up with my co-founders, my incredible co-founders, and we hosted the first ever retreat. And we brought a group of survivors and previvors and thrivers all together for the first time for this weekend where we went skiing and snowboarding for many for the first time since diagnosis. And we took everybody to the top of this mountain and we got to the top and we were like, “Okay, we’re going to help you get to the top.” And we looked over the top of the mountain and many of us took our tops off and we were like, “We are here and we are proud of our bodies and what we look like and what we’ve gone through. And we don’t have to be ashamed of what we look like or our experiences.”
And then we got down the mountain on skis, on snowboards, on sleds, however we could get down. And we were like, “Wow.” One of my co-founders said this, they’re like, “Wow, our bodies are capable of so much more than just getting sick. We are still us and we can find joy and celebrate life.” And it was unbelievable. And we left that retreat and we had hundreds if not thousands of people asking us, “When is the next one?”
And so that’s when we incorporated, became an official 501(c)(3) nonprofit organization and really are known now for doing these free events, free wellness retreats around the world, which have been incredible, and we’re so proud of it. We also raise money for stage four breast cancer research, have incredible online resources called The Peak and do so much. But I think also what we do is empower the community to know that you have options, to ask questions and to advocate for yourself, even when it’s really, really hard to advocate for yourself.
I think there’s so many financial implications that come with this, and I have to admit that I’m coming from a place of privilege, and I want to acknowledge that when we talk about this because I know that everybody’s situation is different. First and foremost, I have insurance, and that’s a whole nother conversation. I’m extremely fortunate that I had insurance, and that really played into my decision to have my preventative bilateral mastectomy at 24 years old. When I was going through this decision, I thought to myself, and listen, you don’t have to have all these things that I’m about to list to make this choice. But for me, I was 24 years old and I had insurance. I had a stable job. I had an incredibly supportive partner, friends, family surrounding me who could come help me and take care of me. I wasn’t the most financially stable, I was only 24 years old, but I felt comfortable enough. And so these factors played into my decision, “I’m going to do this now.”
Now that I’m 30 years old, and I was about to have a revision surgery just last month that got canceled, and I’m navigating those same things that went into that surgery. Insurance, a stable partner. I’m now a business owner and a co-founder of a
nonprofit organization. Two different things. And I have friends and family that can come help.
And now thinking of my financial situation now and thinking of the costs that are associated with it, even if you have insurance, you have to meet your deductible, you have to meet your copays, all of the supplies that you need that come with a surgery, the time off of work. And that’s if it goes according to plan. The medications. If you’re traveling for surgery, because oftentimes many of us travel for surgeries, the travel, the Airbnb, the nights in the hospital. The list goes on.
It is extremely expensive and it is a huge financial burden for many in the community. It’s hard. It’s really hard for so many people. I think that when you say, “Insurance covered my surgery,” which is a privilege and something that is appreciated, that that is one aspect of it. Very enlightening.
Something that I will say though is please lean on your medical team to advocate for you if you feel like you can not advocate for yourself when it comes to getting things covered by insurance, when it comes to asking about why things cost the amount that they cost. Something I didn’t realize is that some hospitals do have that for you. They offer people on their team to provide someone that can help you navigate that if you don’t know how to navigate it yourself, because it can be overwhelming to deal with the cost.
I will say too, it was extremely stressful as well. When I was 24 years old, I didn’t get paid time leave for my surgery. And I remember that being a huge stressor for how quickly I felt like I had to go back to work. And I know that that’s something that so many people in the community feel too, is that your team may say, “Hey, it’s recommended you take four, five weeks off after your mastectomy,” for example. But if you financially feel like you can’t afford to do that, that’s putting a huge emotional stress, financial stress, physical stress on your body. That’s a lot to handle. And so I think that’s something that a lot of people that haven’t been personally impacted by this don’t even think about, your boss doesn’t think about, the company you work for doesn’t think about. And that was financially extremely stressful at the time, that pressure to go back to work.
When it comes to genetic testing, I wish more people knew that you can’t inherit a genetic variant from your dad’s side of the family and your mom’s side of the family. I wish that more people knew that you should ask for a full panel, not just the BRCA gene. The BRCA gene is just one gene of many. I wish that more people knew that if you get genetic testing and it’s inconclusive, meaning they didn’t find a known variant, there’s so many variants that haven’t been discovered yet. That doesn’t mean that you can’t still take preventative measures. That doesn’t mean that you still can’t get screening done. You just need to find the right team that will advocate for you, that will help you. And if you’re struggling with that, please reach out to me, please reach out to the Breasties. We’re happy to help you.
I also wish more people knew that you had options. Something that I mentioned before, oftentimes, especially with our medical teams and our doctors, is things are presented to us as if it’s the only way, that there’s one way. And oftentimes, that’s because it’s the one way or the only way they like to do things, or it’s what they know best. And there’s nothing wrong with that, as long as us as the patient know to ask to understand why they want to do it that way, to understand is that the only option truly or are there other ways that you can do it? The more we ask questions and understand what’s happening to us and our bodies, the better we can make the best, most informed decisions for our lives. I think that is so important.
And I know it’s hard. I know it’s so hard to advocate for ourselves in the doctor’s office. I even struggle with it sometimes where my doctor will be like, “All right, this is the next step.” And I’ll be like, “Okay.” I’ll see myself nodding my head in agreement. And we have to remember to slow ourselves down and be like, “Whoa, whoa, whoa. Wait, hold on a second. I hear you. But why is that the next step? And is that the only next step? Are there other options?” And that has been life changing for me because I was not presented with all of my options when I was undergoing my preventative mastectomy. And if I was, I would’ve made a completely different choice. If I had made a different choice, I probably wouldn’t have so much back pain, neck pain. I’m constantly hunched over. We do have options and we deserve to know what they are and make the best choices for us and our bodies.
Something I’m so passionate about is empowering Breasties to know their worth. And when it comes to sharing your story, you deserve to be paid to share your story. Oftentimes, brands, people, organizations, will ask you to share your story for free. And I don’t think that people know that that’s pink washing, that’s exploiting you and your story for your own personal gain and profit. I think that so often people don’t realize the emotional toll that has on us to share our stories. Our voices matter. They are important, and our stories need to be told, but you also deserve to get paid for your time, for your story, and you are worth it.
I think pink washing is a huge problem that happens not just in October, but beyond. And I think that more Breasties need to know that it is okay to ask to be compensated to share their stories. You need to be asked to be compensated when you’re asked to be a part of campaigns. I think as Breast Cancer Awareness Month is quickly approaching, you’ll see all of these campaigns coming up, and oftentimes Breasties are in them, which is amazing. Awareness is important. I’m not saying it’s not, but so is compensating people for their time, their energy, and their stories.
Pink washing is a marketing tactic. It’s the exploitation of breast cancer for profit or public relations. It’s the act of supporting the breast cancer cause or promoting a pink ribbon product while actively producing, manufacturing, or selling products linked to the disease. Pink washing can also include the exploitation of a Breastie’s story as well.
I want to also note that pink is not the problem. I’m wearing pink today. That is something to note, that you can support pink, you can support those impacted by breast cancer. You can still like the color pink. Pink is not the problem. Pink washing is the problem, and I want to be very clear about that. And so just pay attention when you go to support a brand or a cause. Make sure you ask the questions, “Where’s my money going? Who is this helping?” Directly give to nonprofits if you can. If you’re ever curious, “Is this actually helping?” When you go buy the pink pajamas and you’re like, “Wait, is the money giving back?” You can always directly give back to the foundation, to the organization, and that’s how you know 100% of your dollar is giving back. And you can also give back to a patient. If somebody directly impacted by cancer, they can always use your help too. That’s a great way to know exactly where your money’s going.
Something that I’m very passionate about is empowering the community to know that you can advocate to get paid and to get paid what you are worth. And if you ever need help with that, please, you know can reach out to me. I’m happy to help with that. Somebody who does an incredible job, who not just talks a talk, but walks the walk is truly the Dr. Susan Love Foundation. They truly mean it when they say that they want advocates in the room where it happens. And they don’t just say, “We want advocates there,” and then leave it hanging. They actually really want us there and they make it a mission to get us there.
For example, they are hosting the Symposium of the Human Breast. It’s the 11th International Symposium of the Human Breast. It’s coming up. And they have a full scholarship for their advocates. If you’re unfamiliar what this is, it’s unbelievable. They have advocates and researchers and they come together with doctors to create this one of a kind think tank environment for people.
No other foundation brings advocates in the way that they do and truly puts us on the team with researchers. Nobody. Genuinely, I mean this, no one else does. It would be enough if they said, “We want you there, find your way,” which would be hard to do, but if they just invited us in, that would mean the world. If they said, “You’re invited in and it’s free to come,” which a lot of other people do that, that’s what they do. They say, “Okay, your ticket’s free, welcome in.” That would also be kind. They take it a whole step further and they’re like, “We will pay for your travel to get there. We will pay for your hotel and your food because we mean it when we say we want you in that room, because only you can tell us how this impacts you as a patient, as an advocate. And we need you there, and we want you there, and we’re going to make it our mission to get you there.” More people need to do that. More people need to be like the Dr. Susan Love Research Foundation.
If you want to find me, you can find me across all social media channels, paige_previvor. P-R-E-V-I-V-O-R. And you can also find us at the_breasties. T-H-E, underscore, Breasties, B-R-E-A-S-T-I-E-S, like best friend, but breast friend. That’s how you can find us and please reach out. We would love to have you be a part of our community.
I would also say that if you’re watching this, please join the Love Research Army. It is an incredible resource for researchers. And many of the studies are remote, which is incredible, so you don’t even have to go in person to join. Anyone can join with or without a breast cancer diagnosis. And your participation can have a major impact on breast cancer and help finding a cure for all.
Tori Dunlap (00:55:36):
For people who are coming in to your practice, are there times where you can’t recommend a best course of action because they can’t afford it? And if so, what happens then?
Dr. Stephanie Graff (00:55:49):
No, but. I’m a breast medical oncologist. I pret
ty exclusively see people who have been diagnosed with cancer. And one of the nice things about a cancer diagnosis is that there are a ton of nonprofits, there are a ton of laws, there are a ton of support networks, my health system, et cetera. Industry, pharmaceutical companies, have so many tools that I can use to get people what I need that it is very unlikely that I am not able to provide the standard of care or best practice for a patient diagnosed with breast cancer.
Tori Dunlap (00:56:49):
Dr. Stephanie Graff (00:56:52):
That doesn’t mean that it’s still going to be cheap or affordable for the patient. This is the Financial Feminist. I’m sure you’ve talked about things like the Medicare donut hole. There are still people who end up in situations where even a small copay is catastrophic to their fixed income. And I also have patients that in order to jump through those hoops, have to disclose a lot of financial details. And sometimes they, and unfortunately for women, often their partners, are not comfortable doing that, and that gets weird to get them what they need.
Tori Dunlap (00:57:52):
Yeah, I think about that all the time. The $500 expense, whether that’s healthcare or your car gets towed or something happens, that can absolutely devastate you. Yeah.
Dr. Stephanie Graff (00:58:07):
Tori Dunlap (00:58:09):
Dr. Stephanie Graff (00:58:10):
Tori Dunlap (00:58:11):
For an uninsured person, if somebody is uninsured, what options do you have for mammograms, care, diagnosis, treatment? What are your options at that point?
Dr. Stephanie Graff (00:58:22):
Yeah. This is very regionally specific so it’s hard for me to answer for a national audience, but right now I practice in Rhode Island, previously I was practicing in the Kansas City metropolitan area, which spanned Kansas and Missouri. But when I was in Kansas and Missouri, I worked for a national organization, so I also sort of knew what was going on in Texas and Tennessee and Florida. The answer is, it’s very complicated. Every region has sort of a leader in breast cancer awareness, breast cancer fundraising. And my guess is, you dear listener, know who that are in your region because they’re the people sponsoring the walk. Everybody has a walk in your region with the pink ribbons and you’ve seen it. And whoever’s name is on that sign, you just pick up the phone and you call them. And you say, “I’m uninsured, underinsured, not insured. How do I get a free mammogram in this town?”
Tori Dunlap (00:59:36):
Dr. Stephanie Graff (00:59:36):
And they will tell you. In some places it’s Komen. In some places it’s American Cancer Society. In some places it’s the free health system. In some places it’s a partnership between those places. I’ve seen places where the rich for-profit fancy health system has a mammogram van that the local church pays for free mammograms one month of the year in their parking lot. Who knows what weird hodgepodge tapestry of healthcare your community has figured out, but your community has figured this out, because again, one of the weirdly nice things about being a breast oncologist is that breast cancer has a lot of funding and gets a lot of attention. And so most communities have this problem solved.
Tori Dunlap (01:00:38):
Yeah. Can you take me through a typical timeline? When do women need to start doing self checks, get their first mammogram? What does that timeline look like as you age?
Dr. Stephanie Graff (01:00:49):
Yeah, so for an average risk woman, it would be different if everyone in your family has had cancer.
Tori Dunlap (01:00:58):
Yeah. Can you define average risk for us? What does that mean?
Dr. Stephanie Graff (01:01:02):
Yeah. Yeah. It’s easier maybe to define high risk than average risk. You would be high risk, for example, if you were at risk to have one of the genetic mutations for breast cancer. And so I’m speaking to you if you have many family members with breast cancer or ovarian cancer, or if there are people in your family who have been diagnosed with breast cancer at very young ages, in their 40s or 30s, or if there’s any men in your family who have been diagnosed with breast cancer. That’s also sort of a red flag that there may be a genetic mutation. And certainly then if there is a known mutation in your family.
Tori Dunlap (01:01:49):
What percentage of male identifying people are the total percentage of breast cancer patients?
Dr. Stephanie Graff (01:01:55):
In 2021, there were about 2600 men diagnosed with breast cancer. And that’s pretty consistent year over year.
Tori Dunlap (01:02:04):
Dr. Stephanie Graff (01:02:04):
Yeah. And it’s largely two populations. They’re either genetically mediated cancers or men over the age of 70.
Tori Dunlap (01:02:12):
Okay. Got it. Okay.
Dr. Stephanie Graff (01:02:14):
Yeah. Okay, so assuming you are average risk, that you don’t have a terrifying family history and you aren’t actively feeling anything. If you’re actively feeling anything, you just need to go talk to your doctor and have it checked out. The typical recommendation is that you start once a year screening mammograms at age 40 and that you do them once a year as long as you’re in reasonable health. There has been controversy of late about whether or not at some point you can switch to every other year. Switching to every other year, I might get the statistic wrong, I don’t have it right in front of me, the statistic is that doing every other year maintains 80% of the benefit of doing it every year or something. And I remember seeing that statistic and thinking, “I’m not a B student, I’m not settling for an 80%.”
Tori Dunlap (01:03:10):
Right. Is the idea people will do it more often if it’s every other year? It’s more accessible? Is that the idea? Because I’m like, “Well, I may as well check every year if it’s accessible to me.”
Dr. Stephanie Graff (01:03:21):
Right. And I would counter that. Who can remember every other year? Every year, it’s just in your calendar and you know, “Oh, it’s April, I need to go do this.” Right? But every other year, you are constantly thinking, “That was just last year,” and then all of a sudden five years have passed.
Tori Dunlap (01:03:40):
Especially 2020 through 2022. It’s been two years, but has it?
Dr. Stephanie Graff (01:03:44):
Yeah. It’s like how I still think I graduated from high school 20 years ago, even though it was way longer than that.
Tori Dunlap (01:03:52):
Oh, in my head, 2008, it’s five years ago. I’m fully convinced. I’m fully convinced. 2008 was five years ago. Fully convinced.
Dr. Stephanie Graff (01:04:00):
Yeah. I think every other year is a nightmare because that’s just not how our brains work. And honestly, that’s not how electronic medical records work. Again, as a primary care doctor, I have no idea how they track things like that. That’s not how system alerts work. Anyway, we’re on a tangent. I would still recommend every year, insurance still pays for every year. Just do it every year. 80% of the benefit is not good enough for us women. We deserve better. There’s also been controversy about starting at age 40 versus age 50. Again, we talked earlier about that the risk, decade by decade, the odds of being diagnosed with breast cancer under the age of 40, for women age 40 to 49, the risk is one in 49 women will be diagnosed with breast ca
ncer. For women in their 50s, it’s one in 42. Not a big difference, One in 49, one in 42, but that little difference between 49 and 42 shifts the statistics that when you’re thinking about it from a population health perspective, says, “Well, maybe it would be okay to wait.” And for me, again, just start at 40.
Tori Dunlap (01:05:28):
We have a lot of listeners in their 20s and 30s. What should we be doing? I’m 27, I’m almost 28. What should I be doing? I think when I go to the gynecologist, they always check me, but beyond that, what do I need to make sure to do?
Dr. Stephanie Graff (01:05:43):
There’s also a lot of controversy about self breast exams, which I also think is somewhat ridiculous. For a long time, the recommendation was to start monthly self breast exams at age 21. And I don’t know why 21, I’m sure it was because somebody thought it was perverse for women to touch themselves under the age of 21. But you can touch yourself whenever you want to. Friends, it’s okay. It’s your body.
Tori Dunlap (01:06:07):
There you go. You heard it here.
Dr. Stephanie Graff (01:06:09):
Yay. Power to us. And that the truth is, is I think that knowing what your normal breast tissue feels like is how you’re going to know when it’s not normal. You don’t need to do a breast exam every day. That’s insane. Knowing how your breast tissue changes over the course of your menstrual cycle is also helpful. It’s going to be different when you’re on your period versus the week before your period versus the week after your period. Get comfortable with what normal feels like for you. Know that your breast is sort of shaped like a comma, in that there is breast tissue that kind of extends up into your armpit a little bit.
Tori Dunlap (01:06:48):
Dr. Stephanie Graff (01:06:49):
So make sure that you’re feeling that armpit breast tissue too. And yeah, now we’re all poking our armpits, right?
Tori Dunlap (01:06:55):
I’m checking. I know, literally, I’m like, “Okay. All right.”
Dr. Stephanie Graff (01:06:59):
And then the other thing I would say about monthly self exams and knowing your normal and being in your 20s and 30s is that the other thing that we can do that’s really helpful in our 20s and 30s is just live a healthy breast lifestyle, which is also a healthy lifestyle. Things that we do in our 20s and 30s that ultimately go on to affect our breast cancer risk are not smoking, using alcohol minimally.
Tori Dunlap (01:07:30):
Can you define minimally for us?
Dr. Stephanie Graff (01:07:33):
Women are considered moderate to heavy drinkers if they have more than five to seven alcoholic beverages a week. Right? Yeah. I’m talking to you, everyone listening.
Tori Dunlap (01:07:48):
Everyone in Europe, I’m sorry.
Dr. Stephanie Graff (01:07:53):
Everybody, pause the podcast, go over to Google. Look at the trends of women during the pandemic and their alcohol consumption. It’s terrifying. American women are now daily drinkers and that is really bad for our health and we have to stop. Please stop. Please stop. Yeah, so minimal alcohol intake and non-smoking. Being closer to your ideal body weight. Again, obesity is the number one risk factor for breast cancer. The number one cause of death for women is still heart disease, which is linked to obesity, obviously. So just being healthy really is going to be great for your breast health. And then the 20s and 30s is when we’re making decisions about children. Ultimately, you do you. You want kids, you don’t want kids, they happen, they don’t happen. You do you. But if you have kids, breastfeeding lowers your risk of developing breast cancer. That’s my breastfeeding plug. The longer you can do it, the better for lowering your breast cancer risk. Again, breastfeeding’s hard, you do you. There’s a national formula shortage.
Tori Dunlap (01:09:05):
As we’re recording this.
Dr. Stephanie Graff (01:09:06):
There’s a crisis at the grocery store.
Tori Dunlap (01:09:13):
Word is still out, but I will probably not have children. Do I need to breastfeed in order to lower my breast cancer risk?
Dr. Stephanie Graff (01:09:21):
No. No. Yeah.
Tori Dunlap (01:09:21):
Is that a, “Oh, I have to have children so I don’t get breast cancer?”
Dr. Stephanie Graff (01:09:25):
No, no. And this is one of those things. One of my favorite quotes that I say literally 100 times a week is that there’s three kinds of lies. Lies, damn lies and statistics. These are all just statistics, right?
Tori Dunlap (01:09:43):
Dr. Stephanie Graff (01:09:44):
Being nulliparous, that’s my doctor word for never having had a baby, increases your risk of breast cancer and breastfeeding decreases your risk of breast cancer, but it’s decreasing your percentages fractionally. And so doctors are terrible about saying, “Well, that increases your risk 30%,” but your risk of breast cancer isn’t 100%. It’s not taking it from 100% to 130%. Your risk of breast cancer is 12%. If it increases your 12% risk by 30%, guess what? It increased it from 12% to like 12.8%. It’s more like damn lies. Right? Statistics are just statistics and you have to understand the percentages and how a relative risk increase, which is what we’re always talking about when we say, “Well, that’s a 30% increase in your risk.” It’s a relative risk increase. And so you have to know of what risk. Right?
Tori Dunlap (01:10:47):
Got it. I have heard, I’m sure this is a myth, and you can probably dispel it for me. If you have bigger breasts, you’re most more likely to get breast cancer. And I’m asking this as a personal question because…
Dr. Stephanie Graff (01:10:59):
Yeah. No. Our breast size is wholly unrelated to our cancer risk. Huge, tiny, no difference at all. Size, shape, none of it matters. Getting cosmetic implants does not change your risk.
Tori Dunlap (01:11:18):
Does reduction? Does that change your risk?
Dr. Stephanie Graff (01:11:20):
Doesn’t change your risk. You can still have breast screening, screening mammograms, regardless of whether you get cosmetic implants or a reduction. Your screening is still the same. There’s also all these other ridiculous myths about deodorant and bras and blah, blah, blah. Nope. Not true.
DeeDee Gilchrist (01:11:42):
My name is DeeDee Gilchrist. I am 57 years old. And at this time, I have metastatic breast cancer. The first time I was diagnosed was strictly by a mammogram. I went in for my annual exam and they called and said, “Oh, look, there’s something there,” and had me come back in for the follow up testing. I had a biopsy, an MRI and all that, and they found that. It was seven years after that that I started having additional problems that I thought was related to the treatment from my first diagnosis when I went back and had another MRI and found out I had it again. Although in my case, it is not a recurrence of the first one. The second diagnosis is a totally different type of breast cancer.
Metastatic breast cancer is breast cancer that has traveled to other parts of your body. It can be into bones, or in my case, I had some in my chest area, a little bit in my lungs. It wasn’t into lymph nodes. As far as we can tell, it has not traveled into any bones or anything in my case. That’s really good. But basically, metastatic is a stage four. It’s not something that can be cleared or taken care of with surgery or anything like that. It’s something tha
t I will basically have for the rest of my life and I will be on medication to control it for the rest of my life.
From the financial aspect, the first time I was diagnosed, because it was caught early and it was a very non-aggressive type, I had a bilateral mastectomy. I was off work for a little over a month after my surgery. And so financially, my insurance company covered the bulk of it. There’s the normal out of pocket expenses and things like that. There’s the other expenses of time off from work for my husband for taking care of me or for my daughter for taking care of me at the time. That one was pretty basic.
The second time I was diagnosed, because it was a very aggressive form of cancer, then the costs were much more. And this is continuing treatment now two years later. I have monthly medications. I still have time off from work. My husband still has time off from work. A lot of those things you really don’t think about, but they do play into it, especially financially. At this time, financially, I am scheduled I miss one day a work a month to go in. I’m still on medications. I get shots every four weeks and then I take a medication for three weeks and have a week off. And one of the biggest financial things is that medication that I take for the three weeks. That was a real eye opener when I started, because the medication is about $11,000 a month. If you don’t have insurance, it’s beyond crazy, some of the costs. The shots I get are very expensive too, but they get billed through the hospital, so that’s a little different. Just getting your monthly medications, it is amazingly expensive.
Yes, I knew I had it. A lot of the change in me was looking forward. I have a daughter. Now this is something she has to follow up on. Shortly after this, I had a granddaughter and thinking the future. Now this is something she might have to deal with. It changed a few things, but not a lot. After I was diagnosed the second time and it turned out to be metastatic, that’s changed a lot because basically this is my new normal from now on. This will be medication all the time, treatment all the time, being very careful. When COVID hit, that was a big deal. I was actually diagnosed two weeks before they announced COVID. That affected a lot of things. My outlook on things has changed. I try to do more things now to get more excited and do things sooner than before where it was like, “Oh, maybe I’ll do that sometime.” Now is sometime for me.
As much as it is a horrible disease, and believe me, it is a horrible disease, I would want people to know that you can survive it. You can live with it. It’s not the end of the world. You have to stay strong and do what needs to be done. One of the biggest things is I hear people all the time talk about, “Oh yeah, I’m due for a mammogram, but maybe next month or I’ll do it.” You’ve got to do it religiously. That’s your best option is to find these things early and to be able to take care of them early. I would say to anybody listening, it’s not the end of the world to be diagnosed, obviously in some cases it’s worse than others, but just whatever happens in your case, look into everything. Look into all the treatments. Don’t just say, “Okay, do this and be done.” Look into everything. Figure out what works best for you and do it.
Tori Dunlap (01:18:11):
What ways can we as individuals, but also communities, help people with breast cancer?
Dr. Stephanie Graff (01:18:19):
As individuals, so eventually, listeners, someone you know will be diagnosed with breast cancer. And my advice is to actually show up. It’s so scary when someone you know has cancer and it’s hard to know what to do for them. And they’re not going to know what you can do for them. And so I think that our tendency as humans is to decide that the best thing to do is to give them space. And what happens is that the person diagnosed with cancer ends up feeling abandoned by everyone. Show up. Even when they say they don’t need anything, just barge into their house and fold their laundry. I know they said they didn’t need anything. They’re lying. They need something. They just don’t even know what it is. Walk their dog, fill up their gas. I don’t know, but show up.
Tori Dunlap (01:19:13):
DoorDash them dinner. Yeah.
Dr. Stephanie Graff (01:19:15):
Yeah, yeah. Show up. As a society, fight the good fight. And we all have different ways that we give. Some of us give money. You can find charitable donation, charity organizations that are doing meaningful cancer research, that are making the difference in lives of people who don’t have good access to care. Some of us are engaged in political action. You can work with organizations like American Cancer Society or ASCO, the American Society of Political Oncology, other organizations that do Capitol Hill advocacy work to make sure that legislation is powerful for persons diagnosed with cancer, or that cancer research continues to be funded in a way that meaningfully moves the world forward.
Some of us participate by raising awareness, whether that’s through locks and community
events or things like that. It’s not just the money that’s raised at the community event. It’s the community knowing that the organization is there and being aware about the body and mission of their work. There’s all sorts of things like that that we can do. American Cancer Society, for example, has a driver program so you can drive people to cancer treatment.
And then the Dr. Susan Love Foundation, who I’m a medical advisor, I’m on the show from you today, you think you found me through Dr. Love. The Dr. Susan Love Foundation has something called the Love Research Army, which is another really great way for people to get involved. The Love Research Army is basically a fancy email list serve and you can sign up. And what will happen is that anytime there is a clinical trial that we partner with, we will send it out on the email list serve.
And a lot of the times those trials are screening trials or prevention trials or sometimes cancer treatment trials. And that may not be relevant to you. You may not be have a family history of male breast cancer or be a Filipino woman diagnosed with breast cancer under the age of 60, but your elementary school teacher or your dog walker or your best friend may be. And you will forward that email to them and it will be life changing. And it’s an email, which we all get a million of, and it gives you a quick way to make a difference.
Tori Dunlap (01:21:56):
I’m thinking about, well, I can’t imagine what your day to day life is like doing this work. What do you love about it? And how can we just as a society better support physicians who are showing up in times of crisis for individuals?
Dr. Stephanie Graff (01:22:18):
Yeah, I love my job. What do I love most about my job? That’s hard. I love connecting with people. I love talking to my patients. I love talking to them when they’re in crisis and helping them feel better about the fact that they’re in crisis and making a plan for that and getting through it. I love celebrating the really good things that happen in cancer land. And I love holding people when the really bad things happen. What I get to do is such a gift and it’s so cool to be in that room one on one with somebody. I’m getting all choked up just thinking about it.
Tori Dunlap (01:22:53):
No, I’m crying too.
Dr. Stephanie Graff (01:22:54):
Ah, it’s so amazing.
Tori Dunlap (01:22:56):
Dr. Stephanie Graff (01:22:58):
What can we do as a society? Gosh. Learn math and science in schools and encourage our kids to celebrate the contributions that math and science make in the world. We’ve seen things like the COVID vaccine just revolutionize so quickly. And I think that we’re living in such a dystopian world sometimes to see the way things are. What’s amazing is that it takes all of us. It takes teachers and physicians and scientists and politicians and people wearing out their shoe leather on the streets.
Tori Dunlap (01:23:45):
Social workers. Yeah.
Dr. Stephanie Graff (01:23:47):
Yeah. To make the world amazing. I think what we can all do is just be diligent members of society. Somewhere, something we’ve said or talked about today spoke to you, and there was something in there that felt actionable or meaningful to you or some other part of cancer care or societal change. And you should get out there and get involved in that because that passion and energy that you have as a human for that idea is what the world needs.
Tori Dunlap (01:24:24):
What gives you hope?
Dr. Stephanie Graff (01:24:25):
Conversations like this. Isn’t it cool that people are thinking and learning about what to do and how to prepare for the future and what it would look like and just thinking about all the ways that their lives intersect the lives of others? Isn’t that cool?
Tori Dunlap (01:24:48):
It’s really cool.
Dr. Stephanie Graff (01:24:50):
Tori Dunlap (01:24:51):
Yeah. Dr. Graff, where can people find you and connect with you?
Dr. Stephanie Graff (01:24:55):
Honestly, the probably easiest social way is Twitter. I’m drsgraff on Twitter. I’m a medical advisor at the Dr. Susan Love Foundation. You can find us online. Join the Love Research Army. The organization’s amazing. We’re consistently the top breast cancer charity in the country and are doing really disruptive cancer research. I’m proud to be a part of it.
Tori Dunlap (01:25:17):
Thank you. Thank you for your time and your expertise and your work. Wow. Thank you.
Dr. Stephanie Graff (01:25:21):
Tori Dunlap (01:25:23):
Thank you once again to Dr. Stephanie Graff, Marissa Thomas, Paige More and DeeDee Gilchrist for sharing their stories and resources and being so beautifully vulnerable. We have linked information about the Dr. Susan Love Foundation, The Breasties, For the Breast of Us, and more in our show notes. One of the best things you can do during any month of this year is to give directly to these organizations. That is overwhelmingly the best way to make sure that your dollars are going directly to research, financial aid, and other resources for those experiencing breast cancer. If you don’t have the financial means to donate, please still check out these organizations and support them by following them, signing up for things like The Love Army and volunteering with your time.
And please, more than any episode, share this episode with people who need it most. We have done so much conversation here on our team about the importance of getting screened, especially early screenings if you know you have a history in your family, and just making sure that the people in your life and yourself are taking care of their health to the best of their ability. It can be scary to advocate for yourself, it can be scary to go in and do a checkup, but we would rather have knowledge than not have knowledge at all. Please make sure that you’re on top of your screenings and that you send this episode to the people in your life who need it the most. Thank you, again, as always, Financial Feminists for supporting the show and we’ll catch you later.
Thank you for listening to Financial Feminist, a Her First $100K podcast. Financial Feminist is hosted by me, Tori Dunlap, produced by Kristen Fields, Marketing and Administration by Karina Patel, Olivia Coning, Cherise Wade, Alena Helzer, Paulina Isaac, Sophia Cohen, Valerie Oresko, Jack Coning, and Ana Alexandra. Research by Ariel Johnson. Audio Engineering by Austin Fields. Promotional graphics by Mary Stratton. Photography by Sarah Wolfe and theme music by Jonah Cohen Sound. A huge thanks to the entire Her First $100K team and community for supporting the show. For more information about Financial Feminist, Her First $100K, our guests, episode show notes, and our upcoming book, also titled Financial Feminist, visit herfirst100k.com.