00:00:02
Speaker 1: This is Let's Be Clear with Shannon Doherty.
00:00:07
Speaker 2: Welcome to Let's Be Clear. My name is Sarah Sidner. You probably don't know me unless you're up very early and watch CNN from seven am to ten am Eastern, where I do a new show with two of my buddies during the week. It was during that show that I revealed to the audience and to some of my distant relatives who did not know yet, that I had stage three breast cancer. I did it while choking back tears. But it has now been just over a year since my diagnosis, and while I was still recovering, I had just returned from my double mistectomy. I ended up reading this new story and this was the headline, and I'm going to read it to you now. Actress Shannon Doherty has died after a year battle with breast cancer. She was fifty three years old. I choked down those words, thinking in my head, how is this possible. She was the queen of the nineties. She was a part of our lives. Really all of us watched nine O two one zero, We watched all of the shows that she took part in. She was just sort of around and you sort of feel like you know somebody when they are on your television set. And I'm only a year younger than her. So with all her resources and with all her fame, and with all the people that she comes across, how is she gone? That really struck me. It turns out we both were diagnosed with the same type of cancer, so that sent me down a very depressing rabbit hole. But it really isn't important who I am. It is important that you get the information that you need. And we're going to be real, raw and real. There might be some cringe worthy things said during this podcast because I want you to know what the experience is actually like and some of the things that we never talk about, including sexual health and the problems that come along with cancer treatment. I will be as honest as I can, and embarrassingly so, so I hope that you will enjoy this because we have one of the most wonderful, knowledgeable guest that is with us today who can give you a lot of information. She is Harvard trained, She's an oncologist. She wrote this incredible book called All in Her Head, The Truth and Lies Early medicine taught us about women's bodies and why it matters today. She was also in a special with Oprah. So welcome and thank you for doing this with me. I am not Oprah Winfrey, but I am so happy to have you here to talk through this with us.
00:03:11
Speaker 1: And I'm honored truly to be here with you.
00:03:14
Speaker 2: Okay, So can we start with your pet Peeve? And I just did it when I announced Shannon Doherty had died of cancer. I said she lost her battle with cancer. Why do you hate it when people say lost her battle? Yeah?
00:03:34
Speaker 1: I mean the word in and itself in that context just makes my heart race and honestly my blood boil, because there are no winners and losers in cancer, and language is so critical to how we experience illness, the stories that are told ourselves, that we tell ourselves, and when it comes to cancer, nobody wants to lose that battle. And I think about all the patients that will interpret and have interpreted that is somehow they're not fighting hard enough, when in fact they are truly fighting. And so I would wish and hope that the media and the lay public would remove that metaphor from a cancer diagnosis. In cancer treatment, it's also very violent imagery, as in the drugs that we're giving and the treatment that we're doing, which we're trying to do to ease suffering and to have compassionate care, are really these violent weapons, and it perpetuates a narrative that I think is really more harmful than beneficial.
00:04:34
Speaker 2: That's such a good point, and I do it all the time. I'm like, yeah, I'm battling cancer or I'm fighting cancer. And it does put you in a place where if you don't win, then you didn't try hard enough. Yeah, And what a thing to put on a cancer patient. It's like, course, you didn't fight hard enough. I guess that's why somebody died. And it's not fair nor true. It's not true.
00:04:58
Speaker 1: And it also lends itself to a tremendous amount of guilt that I see day in and day out, where people will say I was so stressed out that's why I got cancer, or I didn't do X, Y and Z, or I'm not an e rate or I'm not visualizing it away. I would love love to be out of a job if we could pray, visualize, and eat our way out of cancer. It's not to say that those things are not important for how we experience disease and a whole host of other things that we can get into, but they're not unilaterally causing or curing cancer. And the guilt that it saddles patients with. I would love to unburden them from that. And what goes along with that is this language of battle and fighting.
00:05:38
Speaker 2: Why do we, as women, and not all women, but many, many women, because you see them coming in a daily basis, Why do we have this need to please our doctors? Why do we have such a hard time advocating for ourselves.
00:05:57
Speaker 1: Oh, I think it's so complicated, but I think so much about the experience of medicine and what happens in the doctor patient exam room reflects history and culture and society and in general, you have a lot of women that have inherited this sense of needing to please and take care of others. And when that is overlaid with the power dynamic of the doctor in the exam room, you don't want to feel like you're bothering them, burdening them, you know, hysterical with them, and it becomes a lot harder to advocate for yourself in that context. And I have been in that situation myself many many times. I think what makes it even harder. And what I've seen is when you have strong, powerful women who are on TV or her lawyers are advocating for other people or who are you know, mothers, whatever it may be, they're taking care of everybody else and advocating for everybody else. And so when they know in their soul I'm not following my intuition or I'm not asking the questions I need to, it feels very devaluing of yourself. And you don't kind of know how to crawl out of that because you think I'm supposed to be this strong person and yet I could not ask this basic question that I've always wanted to know about myself.
00:07:07
Speaker 2: I want to ask you about some of the things that I hear all the time, and you sort of alluded to it. Probably once a week I hear someone say to me, you know, sugar feeds cancer, you really shouldn't eat that. Is that true?
00:07:25
Speaker 1: So there's a lot to unpact there. Sugar is not like you remember going into the cancer and feeding it right. It's not this like one way train with that eminem that you put in your mouth. And that also puts a lot of blame on the patient. That being said, Excessive sugar can lead to excessive weight, it can change your metabolic function, and we know that that is not good overall. As but being what's called a host to cancer. So cancer cells are living in your body, and we want to make them inhospitable. We want to make your body and the environment around it less hospitable to cancer. So I think about you know, if I have a rose seed and I'm trying to grow it in Antarctica, it's not going to grow as well because it's frigid, it's cold, it's snowy. If I put it in Florida with sunshine and great soil, it's going to grow more. So to some degree, the habitat that the cancer can live in matters. So trying to maintain a healthy diet, trying to exercise, is trying to have an overall healthy body is important. But it's not some runaway train. If you have a bite of cake or you have a cookie. We just want to do everything in moderation.
00:08:29
Speaker 2: That is really interesting that you say that, because I asked a couple of different oncologists. I was in one place and then I came to New York and got my treatment here. Because this is where I was working, and I wanted to try to work throughout this. I don't know that was smart or not, but I did, and I asked, is there a cancer diet? Is there something I should be doing or changing and that actually helps to either shrink cancer or to stop cancer? And I was told no twice except when it came to drinking alcohol. Three oncologists said, do not drink alcohol. I'm confused, is there a cancer diet or not? If there's not supposed to drink alcohol, it seems to me that there's got to be something to do with nutrition. It's a great, great question.
00:09:27
Speaker 1: I'll tell you what I think we know, and then we'll hit the alcohol point as well. So we do know that maintaining more of a plant forward diet with less processed foods. And what is processed foods? I mean, there are all these quizzes online about is it process is it not processed? In general, if it's got artificial dies in it, so it's more likely to be processed. If you can't pronounce a laundry list of ingredients there, it's more likely to be processed than nuts.
00:09:51
Speaker 2: Not. You want to think.
00:09:52
Speaker 1: About whole foods, whole grains, real foods and limiting especially processed red meats, process deli meats, the process salami, the pepperoni, things like that, and processed red meats, and doing your best to have again a plant four diet that has fruits and vegetables in it, and a colorful diet. That's the first thing that we know is really important, and again trying to avoid the ultra processed foods. The other piece that we know that can be helpful is alcohol. So in this country especially, we use alcohol to celebrate, we use alcohol to numb feelings.
00:10:27
Speaker 2: There's also from the good to the bad.
00:10:29
Speaker 1: Alcohol runs the spectrum of when you see it infiltrating as a main character in someone's life.
00:10:35
Speaker 2: My mother is British, so we want to talk about alcohol being a main character, like the pub is, like where my grandfather lived. Yes, that was the social event. So alcohol is just part of the way we live and celebrate and.
00:10:50
Speaker 1: Talk exactly exactly, But it's a no for me. It's well, let's think about it. So it's we know that it's a carcinogen. We know that there's an association the more you drink, the higher your risk. However, this is not the same risk as having a genetic mutation that leads to, you know, an eighty five percent increase risk of cancer over your lifetime. But people ask me all the time, what can I do that's within my control. You can't control what your family history is. You can control what you put in your mouth and how you exercise and what you drink. And so we do know that there is an increase association not only with breast cancer, but other types of cancers from alcohol consumption because it is a direct carcinogen. So for my patients that ask me if they can limit it to you know, limited celebrations or think about why are you reaching for that glass? Is there something else we could do in its place? And with respect to the social component of it, I like to invite my patients to think about talking to their family members, talking to their friends instead of saying you had a bad day, have a beer, or we're going to take a toast to you know, with this glass of wine. Is there something else we could do together as a community.
00:11:56
Speaker 2: That's really poignant because it's such an easy thing. What do people always say when you first meet them, Like with girlfriends, it's like, hey, we should grab a drink, yeah, right, and so I have changed that to, hey, let's go grab coffee even if it's four o'clock, you know what I mean, just something else that's still sort of social. But I want to grab a cob of coffee with you girl. You know you even grab a cop of coffee any time with me, and.
00:12:21
Speaker 1: Then we can go with for a walk at the same time and really knock them down.
00:12:26
Speaker 2: Yeah, but that is one of the things. It's like you don't want to say no, and then you get the pressure to drink. I have never been. This is a miracle because my family on both sides, loves a good glass of whatever, usually hard stuff. But I've never been a drinker because I just don't like the taste. And I finally realized in my thirties that I was just drinking socially just because everybody else was and I wanted to fit in. And then I grew up and said, like, I don't even like this. So I get, for example, I'm like seltzer with some cranberry juice and like a pretty flower or throw something in there, like a twist that makes it seem like I'm drinking, so I don't have to hear the amoryam or yam or why aren't you drinking? What are you doing? Yeah? Perfect? Now I'm like, I have cancer, so I can't really drink that and people shut the hell out. That tends to help when they're like, oh, okay, yeah, yeah, but you don't have to use that excuse. You can just make it look like you're drinking and you're just having a Seltzer water with you know, lemon in it. I think that's great. It tends to work for me. Everybody has their way of doing things now too, because you touched on this as you always do, because you're the expert being overweight. Does being overweight or being obese make you more susceptible to cancer? It does, It does.
00:13:45
Speaker 1: So we know that obesity, like tobacco consumption or alcohol consumption, is one modifiable risk factor for cancer, but we know that it can also be a tremendous battle to fight right, and so it's something that we really want patients to talk openly with their doctors about about what are their options, what are their lifestyle options, what are the medication options that they might be able to have so that they can start to decrease their risk from that access weight and this is my fault.
00:14:13
Speaker 2: Like that's the first thing that stuff jump into my head.
00:14:16
Speaker 1: And there is so much shame around that that I think we have to really dismantle and compassionately give patients their options.
00:14:35
Speaker 2: Speaking of shame, this is a hard one for me to discuss. Uh. And this might be a little cringe worthy, guys, So just you know, if you're listening with your younger kids, or you're listening with a daughter or a son, you may not want to go down this road. But I'm going to talk about sex. Where the hell did my libido go? Love that you asked that?
00:14:57
Speaker 1: Can we make sex less cringe worthy?
00:14:59
Speaker 2: It's so be fine, I know, but talking to you're not a stranger, but you all are like, yeah, literally just vanished. Yeah, and I'm married and it's a problem and we can pretend that it is and it's like, oh, you know, it's fine, we'll work it out. It's like you have to talk about it and it's so uncomfortable. So what happened? Where does it go when you're in cancer treatment?
00:15:25
Speaker 1: I think it's so multifactorial. And again I champion you, celebrate you for going there and really authentically talking and vulnerably talking about such an important topic and one that I bang my head against the wall all the time so that we can really honor this, particularly for women. We know as a society we are far more likely to address sexual needs of men than we are about women, and it is a huge bleeping problem. I know we're on a recorded line right now, so I can't insert all the profanity, but I really I really mean all of it, and it's a real that in and of itself is a shame. Historically and to the present, we are two times more likely to ask men about sexual side effects from cancer targeted therapies than we are women. And I see this shameplay out day in and day out. So when it comes to cancer and breast cancer specifically in libido, lots of different things. First of all, the stress and trauma of going through a cancer diagnosis is huge.
00:16:16
Speaker 2: That's all you can think about all.
00:16:18
Speaker 1: It's all yes, And our sexual beings and our sexual self is so related to how we feel in our bodies physically, how we approach things mentally, the ways that we access joy, and the things that might inspire us throughout the day, especially if we're thinking about a cancer diagnosis or cancer treatment, or even just scheduling treatment can be exhausting and overwhelming for patients. And then there's the biological and physical issues that can go on from cancer treatment, and particularly with breast cancer treatment, it can affect hormone levels, which can.
00:16:49
Speaker 2: We about to talk about that.
00:16:50
Speaker 1: Let's do it. You want me to just bring it, I mean, and we can just go there. But you know, particularly with intercourse women, it can feel like I have heard so many patients say.
00:17:00
Speaker 2: It's painful, painful.
00:17:01
Speaker 1: They tell me it feels like having knives, yes, right, like shards of glass inside your vagina. And we should be able to use that language and talk about it and de shame it and figure out what we're going to do about it. So for breast cancer patients, there are lots of things that we can do, including treatments that we give directly locally that can improve the hormonal function of that area. And we have to not only bring more research into this, but more clinical expertise.
00:17:27
Speaker 2: I think that, Okay, you just said something I hadn't heard, so I need to yeah, because you know, I know down rabbit holes, and you know, I'm one of those googling people, which I was warned not to, and you can't stop me because it literally is part of my job. So I can't help it. But you just said there are things that you can use, Yes, estrogen even if you have an estrogen.
00:17:48
Speaker 1: Recept Yes, yes, so if you have an estrogen receptor positive breast cancer.
00:17:51
Speaker 2: Okay, so we're blowing my mind right out.
00:17:54
Speaker 1: Yes, yes, so even if you have a cancer that we're trying to block estrogen with throughout your whole body, right, you can use intravaginal forms of estrogen that are not systemically absorbed in any appreciable way that we know from research is not going to increase your risk of breast cancer, but can locally change the tissue and make that what it more used to be.
00:18:17
Speaker 2: Like, right, how come I'm just hearing this right now? I'm a year. Get in there, girl, I'm a year in treatment. Yeah, how come I'm just hearing this? You know why? Because I don't bring it up to my doctor either. I don't. Now, you can just play the recording. I don't want to talk about it. I especially don't want to talk I am a grown ass woman and I don't want to talk about this with a male on cologist. I don't I don't even want to talk about it with the female colleges to be perfectly like honest, like it gives me all kinds of nervous energy, Like even right now.
00:18:51
Speaker 1: Yeah, well, I wish I could come give you a hug, but I'm not going to crawl over the microphone. But know that every woman that I speak to in some measure has struggled with this, particularly going through a cancer diagnosis, whether it's something that they want to be doing more of or they're afraid of, or it's painful, and it's complex. And part of the issue is it shouldn't just be for the oncologists. We should have sex therapists that work at hospitals. We should have gynecologists that are particularly aware of these issues how they relate to cancer patients. Pelvic floor physical therapy can be hugely helpful for patients, and you know, a lot of hospitals don't have this integrated into their care teams, and we really need to push for that and make that more a part of our society and cultural narrative, so that just like we ask about chess pain or exercise tolerance, we ask patients about their sexual function and what they want for themselves.
00:19:43
Speaker 2: It's really trying to help the whole body. And I know you know where I am right now. That is the mentality is like, we are not just treating you as a cancer patient. We are treating you as a human being. So we want to look at the whole thing. And to be fair a nerve, a female nurse asked me, like, are you dryness? And I in my in my head, I was like, it feels like knives when I'm having sex. And honestly, I worried about my marriage, even though my husband has been unbelievable, like unbelievably strong and unbelievably supportive. And it's like, look at this hurts. We're not doing we will just figure something out. And I feel so guilty, Like I feel so terrible because I know it's not sustainable. And so to hear from you that there's something that I can do about it that's different than okay, the cream and to try this and the it's a revelation to me and I think it will be to a lot of women. Yes, we should mention that hormone receptor HR two HR hormone receptor positive positive and then her too negative is the most common type of cancer, breast cancers. When you hear that, I mean that is you have to strip yourself of hormones because it feeds off basically the hormones. Is that kind of what the cancer is right to.
00:21:03
Speaker 1: Some degree, and especially now if you look at social media, everyone's talking about menopause and giving everyone hormone yes and giving everyone hormone replacement therapy. But we don't have that knowledge about what we can really do for patients who are going through or have survived breast cancer. That is a huge unmet need in terms of breast cancer research. Thinking about for patients who've had breast cancer, can we give them at some point any form of systemic hormonal therapy that can combat some of the issues that women are facing with menopause. We need more research into that and more clinical expertise into that, and at the very least talking to women about local estrogen that they can that they can.
00:21:39
Speaker 2: I just had no idea, But I'm about to go write the doctor right now and send a message and say we need to have a quick meeting so that I can get this prescribed.
00:21:48
Speaker 1: And you know, we've talked a lot about guilt here and I want to if I had a hazardous waste bucket here, I would like to reach into you and pull out that guilt that you have over something that you have.
00:22:02
Speaker 2: You didn't decide for this, you didn't want this. But I hate to see my husband suffering because of it, my family, you know what I mean. Oh my god.
00:22:12
Speaker 1: But but that's also human and you can work through this. There are people that can help you through this, and you deserve that, and you know you didn't. You didn't deserve this, and you don't deserve to suffer. And people around you clearly love you and want to see you happy and thriving. And so if we can have a discussion at some point, you know, with your care team about what is it that you're missing and what is it that you would want back or to access again.
00:22:37
Speaker 2: Oh my god, I want my body back. Yeah, like I want my bland bag. I don't want to talk to you about yeah, sorry now I'm totally crying. Thank you, doctor, doctor. I want to talk to you about menopause and what happens and like secrets, Why the hell we have been keeping these secrets for so long? I always say to my mom, like why didn't you tell me, And there's a shame in it. Women have been told that they're not worth anything once they're past child bearing years, that their life is over, or that they are not worth as much in society. And we are all worth just as much as we're In fact, I am ten times smarter and a better member of society than I was, you know, thirty years ago got them old anyway. But the brain fog, like I did not know anything about menopause except for hot flashes. That's what everyone talks about. But they don't tell you about the brain fog, about everything being dry from your head to your toes and everything in between. About the emotional freakin' roller coaster. I feel like I'm a thirteen year old, like ups and downs, anxiety and depression and happy and sad and like it's insane, and I thought I was going crazy. I literally thought for a second I was going crazy. And it's because my grandfather once said, you know, when you go through that change at a certain age, because again he's British and may he rest his soul, and he would he would say, you know, because your grandmother went through this and she went crazy, And so I internalized that and thought for a second, I'm like, am I going crazy because I was induced into menopause because of the cancer treatment? So am I going crazy?
00:24:27
Speaker 1: No?
00:24:27
Speaker 2: Or is all that symptoms of menopause?
00:24:29
Speaker 1: No, You're not going crazy? And it just really drives home for me. You know, the reason why I wrote the book with so many stories from the past and the present instead of some laundry list of like, here are ten things that will help you feel better about yourself as a woman, is because these stories that we've been told as a society, but also to have people think about what are the stories you've been told yourself from your family about yourself and what will happen to you? And those become so important, as you just talked about with the story about your grandfather, and when you think about it as a women are damned if they do and damned if they don't. When you're when you're menstruating, you're hormonal, so you're crazy from that, right, and because you have this or that or she must be bleet whatever it is, right, And and then and then you stop menstruating, and suddenly you're even more crazy.
00:25:18
Speaker 2: Right.
00:25:20
Speaker 1: And there's been this huge movement now to really uncover Okay, what is menopause?
00:25:24
Speaker 2: How can we treat it?
00:25:25
Speaker 1: And historically, when hormonal replacement therapy first came out, all these women were on it. Then there was a study that was erroneously overinterpreted as saying everyone's going to get breast cancer from hormone replacement.
00:25:36
Speaker 2: There they thought that, yes, that's how I was trained. I thought, yeah, yeah, I was like, you do not do hormone replacement therapy. It is dangerous, you will get you can't get breast cancer.
00:25:45
Speaker 1: And that's simply you know, those those facts were or those numbers were wildly overstated, right, And then now you have this huge movement from all sorts of walks of life, including from celebrities, really to push what is menopause? How do we treat it better? But where we really haven't caught up is what do we do for cancer patients? And what about the astrom receptors in the brain, what about other places in the body. And so there's a lot of work being done on that, but not enough, not enough, And you are most certainly not going crazy. What is crazy is that our medical system has not properly addressed this for women and in turn shamed women too, thinking that they're absolutely nuts when they're not.
00:26:22
Speaker 2: That makes me feel one hundred percent better. I do want to delve into this discomfort or shame or sort of how we act in doctors' offices, and maybe you can give me some advice and how we can better advocate for ourself. And I'm going to do that by reading a little bit of your book. I went through this book like hot butter or hot knife through butter like it was fast. It was a great read because you write it almost like a novel, where you've got these stories of what women have gone through from the very onset of women's health and how women were treated basically as non human to now. So here's partly how you introduce the book. You say, in those first moments after I tell a patient she has cancer, no matter who she is, her responses almost invariably follow the same trajectory. Am I going to die? Why did this happen to me? I'm so sorry for sweating. Yeah, that makes the back of the hairs in the back of my neck stand up, because I had a moment where I was going to the surgeon. It was right before my mistectomy. They have to take a look at your anatomy and sort of figure out what they're going to do when you can ask questions. And after he was done examining me, he says, Okay, I'm going to go out, and the nurse says, okay, now you're going to go to get your pictures. No one had told me anything about pictures. So I walked in and this really kind woman said, okay, just remove your clothing and we're gonna take some pictures. And so I removed my pants and my shirt and left my undergarments on because I'm not going to stand there naked, and she's like, oh, no, you it's everything. I literally felt a wave of shame, like I was five years old or thirteen even worse years old, standing naked in front of a entire room full of people reading a speech, and that there was nothing I could do. I mean, my response as a grown woman was I turned into a little kid. And the pictures were taken and she's like, okay, turn this way, turn that way, and I heard myself saying, oh my god, I'm sorry. So I'm so fat here like oh, I've been trying to work out, and I am explaining to her why I feel so bad about my own body, and I'm about to have a double mistackt to mey like in a month. That was one of those moments that I wish I would have said, Hey, I didn't know anything about these pictures. Can you tell me a little bit more about why you're doing them? Because intellectually, I know they have to take them so because they need to figure out where they're going to be doing and what they're going to be doing and what your body looks like before. But at the moment, I didn't say anything, and I still am pissed with myself about it. So how do we advocate for ourselves? Even in those very simple moments where I could have said I don't want to take pictures today, I didn't say anything.
00:29:40
Speaker 1: I can imagine. I can't imagine, and I'm trying to imagine what a betrayal it feels, too, because you feel almost not only just shame about your body, but betrayed by this body that you've had a relationship with your whole life. And there you have to stand there, literally naked in front of a stre you know, bearing everything your soul and literally literally literally And I wish that had been a far more compassionate process for you.
00:30:11
Speaker 2: And look, it wasn't that there wasn't compassion. She was like, oh my god, girl, you you look great. It was it was this is how we do things. And I think sometimes there's only so much time that the doctor's spending you, it's only so much time that nurses can spend with you, and so it's it felt a little bit like I was on a treadmill and it was like, Okay, this is what we do. Go next. And I should have known because guess what I was doing before that, looking at pictures of other women who had gone through and mistectomy to see what it looks like. Because I am one curious chick. I want to know everything. I even watched a surgery before, like I wanted online. I wanted to see what was going to happen. It didn't dawn on me how I was going to feel. And I walked in there and it was like, you get to stand there start naked, in front of a lady you've never ever met. I wouldn't stand in front of my husband the same way naked. Totally. I'm shocked by this, actually, and here's here's why. Because I am probably and I still have a one major surgery to go through, which is reconstruction. I'm probably going to do what's called a deep flat and if you don't know what that is, it's where instead of getting breast in plants, where you getting a foreign body put in there, they use your own tissue, right and so right, they cut you from very low. So I wanted to see if I had enough tissue, if I had enough fat. I was like, oh, honey, I got plenty. You just needed to ask because I got plenty of fat for you guys to use. But they recreate your breast with your own anatomy, and over time it's a very big surgery. But over time, a lot of women report that it is better for them. Over time, it's easier for them to get the implants in the beginning if they just want to do that, it's a faster recovery, but over time they tend to like to be able to use their own tissue. So that's partly why I just didn't know it was going to be that day, and that that's how Yeah, it worked.
00:32:02
Speaker 1: And think about it, I mean, you were dealing with a new diagnosis, so much trauma, trying to make some decisions about how you want your new body to look like in the setting of you know, this was not elective surgery. This is surgery that you're going to have to have with some options for reconstruction, and in that moment asking you to advocate for yourself, that's it's almost impossible. I've been in that situation myself, and I have my own stories of thinking, how could I possibly not have said what I would say for a loved one, what I would say.
00:32:34
Speaker 2: For a friend? Why am I? You know?
00:32:36
Speaker 1: And in the at the end of my book, before I wrote the conclusion, I went through something medical myself where here I am. I'm literally writing about empowering yourself.
00:32:46
Speaker 2: You know you're a freaking in colleges. Yes you are the doctor of doctors and.
00:32:50
Speaker 1: That women need to be empowered and this is how you can do it and don't feel shame about your body. Look how history screwed us over. You can live differently today. And when it came to my own self, even with like speed dial of great doctors, I didn't want to bother anybody. I minimized my own pain, I apologized for it, and I waited. I ended up in the hospital for a week when I didn't need to be there thinking everything was okay because people said it was, you know, just take some valume literally later.
00:33:22
Speaker 2: That's the thing we usually kind of I.
00:33:24
Speaker 1: Did from the very beginning, and yet I allowed this tsunami of other opinions to tell me I was okay when I was not. And I would love to say that I have a perfect answer for what to do in those moments. But I think, if possible, having somebody else with you is really important, someone that you can trust, someone who will really you can say ahead of time, I know you know me in this way, but I am scared of who I will become in a doctor's setting, and I need someone not just to take notes from me. But this is a question I really want to make sure is answered for me. I want to understand rationale for this. I want to I'm nervous about this. Can you help me make sure that this is tackled in this appointment and even at the start of the appointment, saying to the physician, I know we don't have maybe that much time today, this is important to me, and making sure that we set the agenda at the beginning, or at least if it's not gotten to at the very end to make sure that you feel heard. That's really good, and find another doctor if you don't, because if you feel dismissed, if you feel invalidated, if you feel shamed, if you feel guilted, it's not going to get any better.
00:34:31
Speaker 2: That's really great advice. You said you didn't think you had the answers, but I think that you gave us a couple of really good answers. And I have brought some things up since then to my oncologists, to the surgeon, and they've been nothing but receptive. Good.
00:34:48
Speaker 1: So I stand corrected. It can get better, then it can. It can, it can, it can.
00:34:53
Speaker 2: But sometimes the onus is upon us when we are at our most vulnerable.
00:34:58
Speaker 1: Yes, it's hard, it's almost impossible. I mean, I think back to my own what could I have done differently? And I'm so I'm still so mad at myself right and it's really hard.
00:35:08
Speaker 2: I think that part is the part that I still right now. When I was telling you the story, I was embarrassed that I didn't advocate for myself, because here I am telling women, you've got to advocate for yourself. I was embarrassed and I felt powerless, and those two things playing against each other. It makes me want to jump out of a window like it's that, like I just want to fight or flight, like I want to just get out of there. I don't want to feel these feelings, and I think it lingers.
00:35:36
Speaker 1: It does linger, and sometimes there's real trauma from that. I had this thing during COVID where I thought I had foot drop. Basically my foot was not as strong, and I kept seeing different people and they'd say, Oh, but you're so strong, you can run ten miles and I'm like, no, no, something's not right.
00:35:50
Speaker 2: Something's not right.
00:35:51
Speaker 1: And years later it turned out I had a compress nerve that's probably irreparable, even though I had surgery compressed And every day that I take a step, I feel that my left side is weaker than the other. And I can choose to have this narrative which I go down the rabbit hole many times, being mad at myself. Why didn't I say I showed videos, I said I thought I had foot drop. Why didn't I push for that harder? Why didn't I follow my own intuition? And I have to fight the own narrative of being mad at myself all the time. It's hard, exhausting, exhausting.
00:36:21
Speaker 2: It really is exhausting. I want to ask you how we can talk about cancer because we started this with talking about not using the battle ready words, fighting, battling, slaying, whatever, because it puts the onus on the patient that if they don't fight hard enough and they lose the battle, so to speak, that is their fault. Yeah. So when someone brings up, for example, that you know, look, I've been diagnosed with cancer, what have you heard from your patients that responses that are helpful or comforting and responses that aren't so helpful. And I will art with myself. It's hard for me to say because people just want they want to help you, and they want it to be better, and they want to make you feel better immediately. It doesn't matter who you tell. It could be a stranger or your closest best friend, or your mother or your aunt, or your coworkers. But what happened to me constantly is that if I said so, I just need to let you know I'm actually have been diagnosed with stage three breast cancer, and probably fifty percent of the time I would get You're gonna be fine, You are going to be fine, You're gonna fight this and you're gonna win and you're gonna be fine, and we're all gonna be fine. It's fine. And I would hear that, and I'm like, how do you know, because I just learned. This happened to me, Like I just learned about this, and I know what the statistics are, and I certainly know what they are now for black women, which is about forty percent more likely to die than my white counterparts. So am I going to be fine? And there was such an insistence that I felt like I couldn't say anything else about it. What do you hear from your patients?
00:38:15
Speaker 1: So I think taking a step back, that your experience, a patient's experience, no matter the biology, is theirs and theirs alone, and no one can know what it is like to be in your shoes. I think the most important thing is meeting people where they're at, because everybody wants something and needs something different that's entirely related to who they are as a person and what they want for themselves. Maybe their daughter's getting married, maybe they're going for a new job, Maybe they have other things going on in their life that this is going to impact, and they want to make sure that that's tended.
00:38:48
Speaker 2: To as well.
00:38:49
Speaker 1: I think maybe one of the most basic questions is I'm here for you.
00:38:53
Speaker 2: What do you need? What do you need?
00:38:55
Speaker 1: And if you don't even know I'm going to show up in these ways. And if I'm going to leave you this, if you don't want it, throw it out, or I'm gonna help take your kids to school, whatever it may be. But saying how can I best show up for you? I will be there on whatever terms you want me there because none of us have a crystal ball, none of us knows what tomorrow brings. But I will be by your side in whatever dark tunnel you're in, and whenever the sun is shining again, I'll be there to celebrate with you. And I will be there with the lows, whatever they are, because.
00:39:23
Speaker 2: We just don't know.
00:39:25
Speaker 1: But I think we all don't want that sense of unwanted aloneness. And that's what cancer really brings up, is this fear that you have as a patient. And even some people don't you know, won't even touch somebody with cancer because they somehow feel like it's contagious. It is not contagious. For goodness sake, Maybe you just need a hug, right because a lot of times people rush to fix things, and that is for the doctor. Yeah, that's for the doctor. That's for the healthcare team to really figure out. One of some of the harmful things that I hear happen all the time is, oh, my sister went through it, and you know she decided to do this, and why aren't you getting this surgery? And you have no clue when you're talking to someone what actually happened to them. And then patients feel this pressure to know this stage, to know the grade, to know as if they're like reading off a pathology report and is if the person that you're talking to trained for fifteen years in that cancer and it's going to know exactly what to do for your cancer?
00:40:16
Speaker 2: They don't.
00:40:17
Speaker 1: I hate when they're like, oh, what stage is it?
00:40:19
Speaker 2: Okay? Does that help?
00:40:21
Speaker 1: Are you going to now operate on my patient? Stop asking that? Or I saw this product and you really need to use this right, or like if you just sprinkle tumeric in your shampoo, everything's going to be okay.
00:40:34
Speaker 2: Right, okay? Or drink it because or drink it, sprinkle it, rub it.
00:40:37
Speaker 1: I don't know, but whatever it is, everyone's got some solution and it comes from a good place.
00:40:41
Speaker 2: But I think you can be really damaging. Yeah, that is really good, good advice. And I like that you sort of talk about some of the things that can be damaging, because they sometimes those things get into your head. Yeah, and you're like, maybe I should try that, or maybe I maybe I should, but I you The one thing I did know is that whatever medical advances have been made in medicine here in this city of New York, where you have one of the most renowned, actually more than one of the most renowned cancer specialists in the world, that I was going to do that. I was like, cut it out, burn it out, poison it out, do what you gotta do, but get it out of there. And so I did all those things, sixteen rounds of chemo over five months, five weeks of daily radiation which was exhausting, and a double mistectomy, and then I started thinking, because that's when my mental state started to go down, was actually after I was in the midst of the crisis. And I always say this in my family knows I'm better in a crisis. But it's the longevity of all this that with the most common breast cancer, if you're not already in menopause, you have to take pills for the next seven to ten years to try to kill your hormones, which is also feels like sometimes killing you right, because you're you're different and you're going through all this. But then I had this realization and it really freaked me out. And we'll end with this. I looked at my ancologist after I'd gone through a year of treatment double mist deckt tomy and started doing physical therapy, and I walked in one day and I said, Doc, Am I cancer free. He's like, you're cancer free? How do you know? How do you know? And he looked at me, and he could tell that I was like searingly, like looking with daggers in his face. I'm like, does my blood tell you something? Does my He's like, do you have any symptoms that indicate otherwise? And I said no, But how do you know? How do you know if you're cancer free? When you have this cancer that can be very sneaky, as I have heard a thousand times it can come back, and I have heard from patients where it did come back. So how do we know?
00:43:06
Speaker 1: Yeah, well, I would probably offer a different answer, and one that's more unsettling but really speaks to the existential nature of what it means to be alive.
00:43:15
Speaker 2: We never know.
00:43:17
Speaker 1: Do we know what's going to happen when we walk out of that door. No, But we can choose to do everything in our power to give us the best possible outcome. And that is what your doctor is offering you, the best of modern medicine to dramatically decrease the risk that this cancer will ever come back. We can throw statistics at people, we can give them the best of medicine, but at the end of the day, we don't know. And I think that that is what makes cancer such a challenging diagnosis, is that for all of us, it brings up the reality of what it means to be alive, and it really throws into high relief that every day is a gift. We can hate aging, but on the other hand, those wrinkles are a gift, Those gray hairs are a gift to the alternative, right, And we know what, what's the one statistic we all know? We have one hundred percent death rate, all of us, right, And so I am grateful that you are getting such spectacular medical care, and to the best of our knowledge, you are indeed cancer free. But I don't know about myself, about any of us sitting here today, and so we have to make choices about who we want to surround ourselves with the type of medical care. We want what we do each and every day for ourselves, and try to approach that with grace and humanity for ourselves and everyone else around us.
00:44:29
Speaker 2: Doctor Elizabeth Coleman, let's be clear, you are amazing. Thank you, thank you for having me
Speaker 1: This is Let's Be Clear with Shannon Doherty.
00:00:07
Speaker 2: Welcome to Let's Be Clear. My name is Sarah Sidner. You probably don't know me unless you're up very early and watch CNN from seven am to ten am Eastern, where I do a new show with two of my buddies during the week. It was during that show that I revealed to the audience and to some of my distant relatives who did not know yet, that I had stage three breast cancer. I did it while choking back tears. But it has now been just over a year since my diagnosis, and while I was still recovering, I had just returned from my double mistectomy. I ended up reading this new story and this was the headline, and I'm going to read it to you now. Actress Shannon Doherty has died after a year battle with breast cancer. She was fifty three years old. I choked down those words, thinking in my head, how is this possible. She was the queen of the nineties. She was a part of our lives. Really all of us watched nine O two one zero, We watched all of the shows that she took part in. She was just sort of around and you sort of feel like you know somebody when they are on your television set. And I'm only a year younger than her. So with all her resources and with all her fame, and with all the people that she comes across, how is she gone? That really struck me. It turns out we both were diagnosed with the same type of cancer, so that sent me down a very depressing rabbit hole. But it really isn't important who I am. It is important that you get the information that you need. And we're going to be real, raw and real. There might be some cringe worthy things said during this podcast because I want you to know what the experience is actually like and some of the things that we never talk about, including sexual health and the problems that come along with cancer treatment. I will be as honest as I can, and embarrassingly so, so I hope that you will enjoy this because we have one of the most wonderful, knowledgeable guest that is with us today who can give you a lot of information. She is Harvard trained, She's an oncologist. She wrote this incredible book called All in Her Head, The Truth and Lies Early medicine taught us about women's bodies and why it matters today. She was also in a special with Oprah. So welcome and thank you for doing this with me. I am not Oprah Winfrey, but I am so happy to have you here to talk through this with us.
00:03:11
Speaker 1: And I'm honored truly to be here with you.
00:03:14
Speaker 2: Okay, So can we start with your pet Peeve? And I just did it when I announced Shannon Doherty had died of cancer. I said she lost her battle with cancer. Why do you hate it when people say lost her battle? Yeah?
00:03:34
Speaker 1: I mean the word in and itself in that context just makes my heart race and honestly my blood boil, because there are no winners and losers in cancer, and language is so critical to how we experience illness, the stories that are told ourselves, that we tell ourselves, and when it comes to cancer, nobody wants to lose that battle. And I think about all the patients that will interpret and have interpreted that is somehow they're not fighting hard enough, when in fact they are truly fighting. And so I would wish and hope that the media and the lay public would remove that metaphor from a cancer diagnosis. In cancer treatment, it's also very violent imagery, as in the drugs that we're giving and the treatment that we're doing, which we're trying to do to ease suffering and to have compassionate care, are really these violent weapons, and it perpetuates a narrative that I think is really more harmful than beneficial.
00:04:34
Speaker 2: That's such a good point, and I do it all the time. I'm like, yeah, I'm battling cancer or I'm fighting cancer. And it does put you in a place where if you don't win, then you didn't try hard enough. Yeah, And what a thing to put on a cancer patient. It's like, course, you didn't fight hard enough. I guess that's why somebody died. And it's not fair nor true. It's not true.
00:04:58
Speaker 1: And it also lends itself to a tremendous amount of guilt that I see day in and day out, where people will say I was so stressed out that's why I got cancer, or I didn't do X, Y and Z, or I'm not an e rate or I'm not visualizing it away. I would love love to be out of a job if we could pray, visualize, and eat our way out of cancer. It's not to say that those things are not important for how we experience disease and a whole host of other things that we can get into, but they're not unilaterally causing or curing cancer. And the guilt that it saddles patients with. I would love to unburden them from that. And what goes along with that is this language of battle and fighting.
00:05:38
Speaker 2: Why do we, as women, and not all women, but many, many women, because you see them coming in a daily basis, Why do we have this need to please our doctors? Why do we have such a hard time advocating for ourselves.
00:05:57
Speaker 1: Oh, I think it's so complicated, but I think so much about the experience of medicine and what happens in the doctor patient exam room reflects history and culture and society and in general, you have a lot of women that have inherited this sense of needing to please and take care of others. And when that is overlaid with the power dynamic of the doctor in the exam room, you don't want to feel like you're bothering them, burdening them, you know, hysterical with them, and it becomes a lot harder to advocate for yourself in that context. And I have been in that situation myself many many times. I think what makes it even harder. And what I've seen is when you have strong, powerful women who are on TV or her lawyers are advocating for other people or who are you know, mothers, whatever it may be, they're taking care of everybody else and advocating for everybody else. And so when they know in their soul I'm not following my intuition or I'm not asking the questions I need to, it feels very devaluing of yourself. And you don't kind of know how to crawl out of that because you think I'm supposed to be this strong person and yet I could not ask this basic question that I've always wanted to know about myself.
00:07:07
Speaker 2: I want to ask you about some of the things that I hear all the time, and you sort of alluded to it. Probably once a week I hear someone say to me, you know, sugar feeds cancer, you really shouldn't eat that. Is that true?
00:07:25
Speaker 1: So there's a lot to unpact there. Sugar is not like you remember going into the cancer and feeding it right. It's not this like one way train with that eminem that you put in your mouth. And that also puts a lot of blame on the patient. That being said, Excessive sugar can lead to excessive weight, it can change your metabolic function, and we know that that is not good overall. As but being what's called a host to cancer. So cancer cells are living in your body, and we want to make them inhospitable. We want to make your body and the environment around it less hospitable to cancer. So I think about you know, if I have a rose seed and I'm trying to grow it in Antarctica, it's not going to grow as well because it's frigid, it's cold, it's snowy. If I put it in Florida with sunshine and great soil, it's going to grow more. So to some degree, the habitat that the cancer can live in matters. So trying to maintain a healthy diet, trying to exercise, is trying to have an overall healthy body is important. But it's not some runaway train. If you have a bite of cake or you have a cookie. We just want to do everything in moderation.
00:08:29
Speaker 2: That is really interesting that you say that, because I asked a couple of different oncologists. I was in one place and then I came to New York and got my treatment here. Because this is where I was working, and I wanted to try to work throughout this. I don't know that was smart or not, but I did, and I asked, is there a cancer diet? Is there something I should be doing or changing and that actually helps to either shrink cancer or to stop cancer? And I was told no twice except when it came to drinking alcohol. Three oncologists said, do not drink alcohol. I'm confused, is there a cancer diet or not? If there's not supposed to drink alcohol, it seems to me that there's got to be something to do with nutrition. It's a great, great question.
00:09:27
Speaker 1: I'll tell you what I think we know, and then we'll hit the alcohol point as well. So we do know that maintaining more of a plant forward diet with less processed foods. And what is processed foods? I mean, there are all these quizzes online about is it process is it not processed? In general, if it's got artificial dies in it, so it's more likely to be processed. If you can't pronounce a laundry list of ingredients there, it's more likely to be processed than nuts.
00:09:51
Speaker 2: Not. You want to think.
00:09:52
Speaker 1: About whole foods, whole grains, real foods and limiting especially processed red meats, process deli meats, the process salami, the pepperoni, things like that, and processed red meats, and doing your best to have again a plant four diet that has fruits and vegetables in it, and a colorful diet. That's the first thing that we know is really important, and again trying to avoid the ultra processed foods. The other piece that we know that can be helpful is alcohol. So in this country especially, we use alcohol to celebrate, we use alcohol to numb feelings.
00:10:27
Speaker 2: There's also from the good to the bad.
00:10:29
Speaker 1: Alcohol runs the spectrum of when you see it infiltrating as a main character in someone's life.
00:10:35
Speaker 2: My mother is British, so we want to talk about alcohol being a main character, like the pub is, like where my grandfather lived. Yes, that was the social event. So alcohol is just part of the way we live and celebrate and.
00:10:50
Speaker 1: Talk exactly exactly, But it's a no for me. It's well, let's think about it. So it's we know that it's a carcinogen. We know that there's an association the more you drink, the higher your risk. However, this is not the same risk as having a genetic mutation that leads to, you know, an eighty five percent increase risk of cancer over your lifetime. But people ask me all the time, what can I do that's within my control. You can't control what your family history is. You can control what you put in your mouth and how you exercise and what you drink. And so we do know that there is an increase association not only with breast cancer, but other types of cancers from alcohol consumption because it is a direct carcinogen. So for my patients that ask me if they can limit it to you know, limited celebrations or think about why are you reaching for that glass? Is there something else we could do in its place? And with respect to the social component of it, I like to invite my patients to think about talking to their family members, talking to their friends instead of saying you had a bad day, have a beer, or we're going to take a toast to you know, with this glass of wine. Is there something else we could do together as a community.
00:11:56
Speaker 2: That's really poignant because it's such an easy thing. What do people always say when you first meet them, Like with girlfriends, it's like, hey, we should grab a drink, yeah, right, and so I have changed that to, hey, let's go grab coffee even if it's four o'clock, you know what I mean, just something else that's still sort of social. But I want to grab a cob of coffee with you girl. You know you even grab a cop of coffee any time with me, and.
00:12:21
Speaker 1: Then we can go with for a walk at the same time and really knock them down.
00:12:26
Speaker 2: Yeah, but that is one of the things. It's like you don't want to say no, and then you get the pressure to drink. I have never been. This is a miracle because my family on both sides, loves a good glass of whatever, usually hard stuff. But I've never been a drinker because I just don't like the taste. And I finally realized in my thirties that I was just drinking socially just because everybody else was and I wanted to fit in. And then I grew up and said, like, I don't even like this. So I get, for example, I'm like seltzer with some cranberry juice and like a pretty flower or throw something in there, like a twist that makes it seem like I'm drinking, so I don't have to hear the amoryam or yam or why aren't you drinking? What are you doing? Yeah? Perfect? Now I'm like, I have cancer, so I can't really drink that and people shut the hell out. That tends to help when they're like, oh, okay, yeah, yeah, but you don't have to use that excuse. You can just make it look like you're drinking and you're just having a Seltzer water with you know, lemon in it. I think that's great. It tends to work for me. Everybody has their way of doing things now too, because you touched on this as you always do, because you're the expert being overweight. Does being overweight or being obese make you more susceptible to cancer? It does, It does.
00:13:45
Speaker 1: So we know that obesity, like tobacco consumption or alcohol consumption, is one modifiable risk factor for cancer, but we know that it can also be a tremendous battle to fight right, and so it's something that we really want patients to talk openly with their doctors about about what are their options, what are their lifestyle options, what are the medication options that they might be able to have so that they can start to decrease their risk from that access weight and this is my fault.
00:14:13
Speaker 2: Like that's the first thing that stuff jump into my head.
00:14:16
Speaker 1: And there is so much shame around that that I think we have to really dismantle and compassionately give patients their options.
00:14:35
Speaker 2: Speaking of shame, this is a hard one for me to discuss. Uh. And this might be a little cringe worthy, guys, So just you know, if you're listening with your younger kids, or you're listening with a daughter or a son, you may not want to go down this road. But I'm going to talk about sex. Where the hell did my libido go? Love that you asked that?
00:14:57
Speaker 1: Can we make sex less cringe worthy?
00:14:59
Speaker 2: It's so be fine, I know, but talking to you're not a stranger, but you all are like, yeah, literally just vanished. Yeah, and I'm married and it's a problem and we can pretend that it is and it's like, oh, you know, it's fine, we'll work it out. It's like you have to talk about it and it's so uncomfortable. So what happened? Where does it go when you're in cancer treatment?
00:15:25
Speaker 1: I think it's so multifactorial. And again I champion you, celebrate you for going there and really authentically talking and vulnerably talking about such an important topic and one that I bang my head against the wall all the time so that we can really honor this, particularly for women. We know as a society we are far more likely to address sexual needs of men than we are about women, and it is a huge bleeping problem. I know we're on a recorded line right now, so I can't insert all the profanity, but I really I really mean all of it, and it's a real that in and of itself is a shame. Historically and to the present, we are two times more likely to ask men about sexual side effects from cancer targeted therapies than we are women. And I see this shameplay out day in and day out. So when it comes to cancer and breast cancer specifically in libido, lots of different things. First of all, the stress and trauma of going through a cancer diagnosis is huge.
00:16:16
Speaker 2: That's all you can think about all.
00:16:18
Speaker 1: It's all yes, And our sexual beings and our sexual self is so related to how we feel in our bodies physically, how we approach things mentally, the ways that we access joy, and the things that might inspire us throughout the day, especially if we're thinking about a cancer diagnosis or cancer treatment, or even just scheduling treatment can be exhausting and overwhelming for patients. And then there's the biological and physical issues that can go on from cancer treatment, and particularly with breast cancer treatment, it can affect hormone levels, which can.
00:16:49
Speaker 2: We about to talk about that.
00:16:50
Speaker 1: Let's do it. You want me to just bring it, I mean, and we can just go there. But you know, particularly with intercourse women, it can feel like I have heard so many patients say.
00:17:00
Speaker 2: It's painful, painful.
00:17:01
Speaker 1: They tell me it feels like having knives, yes, right, like shards of glass inside your vagina. And we should be able to use that language and talk about it and de shame it and figure out what we're going to do about it. So for breast cancer patients, there are lots of things that we can do, including treatments that we give directly locally that can improve the hormonal function of that area. And we have to not only bring more research into this, but more clinical expertise.
00:17:27
Speaker 2: I think that, Okay, you just said something I hadn't heard, so I need to yeah, because you know, I know down rabbit holes, and you know, I'm one of those googling people, which I was warned not to, and you can't stop me because it literally is part of my job. So I can't help it. But you just said there are things that you can use, Yes, estrogen even if you have an estrogen.
00:17:48
Speaker 1: Recept Yes, yes, so if you have an estrogen receptor positive breast cancer.
00:17:51
Speaker 2: Okay, so we're blowing my mind right out.
00:17:54
Speaker 1: Yes, yes, so even if you have a cancer that we're trying to block estrogen with throughout your whole body, right, you can use intravaginal forms of estrogen that are not systemically absorbed in any appreciable way that we know from research is not going to increase your risk of breast cancer, but can locally change the tissue and make that what it more used to be.
00:18:17
Speaker 2: Like, right, how come I'm just hearing this right now? I'm a year. Get in there, girl, I'm a year in treatment. Yeah, how come I'm just hearing this? You know why? Because I don't bring it up to my doctor either. I don't. Now, you can just play the recording. I don't want to talk about it. I especially don't want to talk I am a grown ass woman and I don't want to talk about this with a male on cologist. I don't I don't even want to talk about it with the female colleges to be perfectly like honest, like it gives me all kinds of nervous energy, Like even right now.
00:18:51
Speaker 1: Yeah, well, I wish I could come give you a hug, but I'm not going to crawl over the microphone. But know that every woman that I speak to in some measure has struggled with this, particularly going through a cancer diagnosis, whether it's something that they want to be doing more of or they're afraid of, or it's painful, and it's complex. And part of the issue is it shouldn't just be for the oncologists. We should have sex therapists that work at hospitals. We should have gynecologists that are particularly aware of these issues how they relate to cancer patients. Pelvic floor physical therapy can be hugely helpful for patients, and you know, a lot of hospitals don't have this integrated into their care teams, and we really need to push for that and make that more a part of our society and cultural narrative, so that just like we ask about chess pain or exercise tolerance, we ask patients about their sexual function and what they want for themselves.
00:19:43
Speaker 2: It's really trying to help the whole body. And I know you know where I am right now. That is the mentality is like, we are not just treating you as a cancer patient. We are treating you as a human being. So we want to look at the whole thing. And to be fair a nerve, a female nurse asked me, like, are you dryness? And I in my in my head, I was like, it feels like knives when I'm having sex. And honestly, I worried about my marriage, even though my husband has been unbelievable, like unbelievably strong and unbelievably supportive. And it's like, look at this hurts. We're not doing we will just figure something out. And I feel so guilty, Like I feel so terrible because I know it's not sustainable. And so to hear from you that there's something that I can do about it that's different than okay, the cream and to try this and the it's a revelation to me and I think it will be to a lot of women. Yes, we should mention that hormone receptor HR two HR hormone receptor positive positive and then her too negative is the most common type of cancer, breast cancers. When you hear that, I mean that is you have to strip yourself of hormones because it feeds off basically the hormones. Is that kind of what the cancer is right to.
00:21:03
Speaker 1: Some degree, and especially now if you look at social media, everyone's talking about menopause and giving everyone hormone yes and giving everyone hormone replacement therapy. But we don't have that knowledge about what we can really do for patients who are going through or have survived breast cancer. That is a huge unmet need in terms of breast cancer research. Thinking about for patients who've had breast cancer, can we give them at some point any form of systemic hormonal therapy that can combat some of the issues that women are facing with menopause. We need more research into that and more clinical expertise into that, and at the very least talking to women about local estrogen that they can that they can.
00:21:39
Speaker 2: I just had no idea, But I'm about to go write the doctor right now and send a message and say we need to have a quick meeting so that I can get this prescribed.
00:21:48
Speaker 1: And you know, we've talked a lot about guilt here and I want to if I had a hazardous waste bucket here, I would like to reach into you and pull out that guilt that you have over something that you have.
00:22:02
Speaker 2: You didn't decide for this, you didn't want this. But I hate to see my husband suffering because of it, my family, you know what I mean. Oh my god.
00:22:12
Speaker 1: But but that's also human and you can work through this. There are people that can help you through this, and you deserve that, and you know you didn't. You didn't deserve this, and you don't deserve to suffer. And people around you clearly love you and want to see you happy and thriving. And so if we can have a discussion at some point, you know, with your care team about what is it that you're missing and what is it that you would want back or to access again.
00:22:37
Speaker 2: Oh my god, I want my body back. Yeah, like I want my bland bag. I don't want to talk to you about yeah, sorry now I'm totally crying. Thank you, doctor, doctor. I want to talk to you about menopause and what happens and like secrets, Why the hell we have been keeping these secrets for so long? I always say to my mom, like why didn't you tell me, And there's a shame in it. Women have been told that they're not worth anything once they're past child bearing years, that their life is over, or that they are not worth as much in society. And we are all worth just as much as we're In fact, I am ten times smarter and a better member of society than I was, you know, thirty years ago got them old anyway. But the brain fog, like I did not know anything about menopause except for hot flashes. That's what everyone talks about. But they don't tell you about the brain fog, about everything being dry from your head to your toes and everything in between. About the emotional freakin' roller coaster. I feel like I'm a thirteen year old, like ups and downs, anxiety and depression and happy and sad and like it's insane, and I thought I was going crazy. I literally thought for a second I was going crazy. And it's because my grandfather once said, you know, when you go through that change at a certain age, because again he's British and may he rest his soul, and he would he would say, you know, because your grandmother went through this and she went crazy, And so I internalized that and thought for a second, I'm like, am I going crazy because I was induced into menopause because of the cancer treatment? So am I going crazy?
00:24:27
Speaker 1: No?
00:24:27
Speaker 2: Or is all that symptoms of menopause?
00:24:29
Speaker 1: No, You're not going crazy? And it just really drives home for me. You know, the reason why I wrote the book with so many stories from the past and the present instead of some laundry list of like, here are ten things that will help you feel better about yourself as a woman, is because these stories that we've been told as a society, but also to have people think about what are the stories you've been told yourself from your family about yourself and what will happen to you? And those become so important, as you just talked about with the story about your grandfather, and when you think about it as a women are damned if they do and damned if they don't. When you're when you're menstruating, you're hormonal, so you're crazy from that, right, and because you have this or that or she must be bleet whatever it is, right, And and then and then you stop menstruating, and suddenly you're even more crazy.
00:25:18
Speaker 2: Right.
00:25:20
Speaker 1: And there's been this huge movement now to really uncover Okay, what is menopause?
00:25:24
Speaker 2: How can we treat it?
00:25:25
Speaker 1: And historically, when hormonal replacement therapy first came out, all these women were on it. Then there was a study that was erroneously overinterpreted as saying everyone's going to get breast cancer from hormone replacement.
00:25:36
Speaker 2: There they thought that, yes, that's how I was trained. I thought, yeah, yeah, I was like, you do not do hormone replacement therapy. It is dangerous, you will get you can't get breast cancer.
00:25:45
Speaker 1: And that's simply you know, those those facts were or those numbers were wildly overstated, right, And then now you have this huge movement from all sorts of walks of life, including from celebrities, really to push what is menopause? How do we treat it better? But where we really haven't caught up is what do we do for cancer patients? And what about the astrom receptors in the brain, what about other places in the body. And so there's a lot of work being done on that, but not enough, not enough, And you are most certainly not going crazy. What is crazy is that our medical system has not properly addressed this for women and in turn shamed women too, thinking that they're absolutely nuts when they're not.
00:26:22
Speaker 2: That makes me feel one hundred percent better. I do want to delve into this discomfort or shame or sort of how we act in doctors' offices, and maybe you can give me some advice and how we can better advocate for ourself. And I'm going to do that by reading a little bit of your book. I went through this book like hot butter or hot knife through butter like it was fast. It was a great read because you write it almost like a novel, where you've got these stories of what women have gone through from the very onset of women's health and how women were treated basically as non human to now. So here's partly how you introduce the book. You say, in those first moments after I tell a patient she has cancer, no matter who she is, her responses almost invariably follow the same trajectory. Am I going to die? Why did this happen to me? I'm so sorry for sweating. Yeah, that makes the back of the hairs in the back of my neck stand up, because I had a moment where I was going to the surgeon. It was right before my mistectomy. They have to take a look at your anatomy and sort of figure out what they're going to do when you can ask questions. And after he was done examining me, he says, Okay, I'm going to go out, and the nurse says, okay, now you're going to go to get your pictures. No one had told me anything about pictures. So I walked in and this really kind woman said, okay, just remove your clothing and we're gonna take some pictures. And so I removed my pants and my shirt and left my undergarments on because I'm not going to stand there naked, and she's like, oh, no, you it's everything. I literally felt a wave of shame, like I was five years old or thirteen even worse years old, standing naked in front of a entire room full of people reading a speech, and that there was nothing I could do. I mean, my response as a grown woman was I turned into a little kid. And the pictures were taken and she's like, okay, turn this way, turn that way, and I heard myself saying, oh my god, I'm sorry. So I'm so fat here like oh, I've been trying to work out, and I am explaining to her why I feel so bad about my own body, and I'm about to have a double mistackt to mey like in a month. That was one of those moments that I wish I would have said, Hey, I didn't know anything about these pictures. Can you tell me a little bit more about why you're doing them? Because intellectually, I know they have to take them so because they need to figure out where they're going to be doing and what they're going to be doing and what your body looks like before. But at the moment, I didn't say anything, and I still am pissed with myself about it. So how do we advocate for ourselves? Even in those very simple moments where I could have said I don't want to take pictures today, I didn't say anything.
00:29:40
Speaker 1: I can imagine. I can't imagine, and I'm trying to imagine what a betrayal it feels, too, because you feel almost not only just shame about your body, but betrayed by this body that you've had a relationship with your whole life. And there you have to stand there, literally naked in front of a stre you know, bearing everything your soul and literally literally literally And I wish that had been a far more compassionate process for you.
00:30:11
Speaker 2: And look, it wasn't that there wasn't compassion. She was like, oh my god, girl, you you look great. It was it was this is how we do things. And I think sometimes there's only so much time that the doctor's spending you, it's only so much time that nurses can spend with you, and so it's it felt a little bit like I was on a treadmill and it was like, Okay, this is what we do. Go next. And I should have known because guess what I was doing before that, looking at pictures of other women who had gone through and mistectomy to see what it looks like. Because I am one curious chick. I want to know everything. I even watched a surgery before, like I wanted online. I wanted to see what was going to happen. It didn't dawn on me how I was going to feel. And I walked in there and it was like, you get to stand there start naked, in front of a lady you've never ever met. I wouldn't stand in front of my husband the same way naked. Totally. I'm shocked by this, actually, and here's here's why. Because I am probably and I still have a one major surgery to go through, which is reconstruction. I'm probably going to do what's called a deep flat and if you don't know what that is, it's where instead of getting breast in plants, where you getting a foreign body put in there, they use your own tissue, right and so right, they cut you from very low. So I wanted to see if I had enough tissue, if I had enough fat. I was like, oh, honey, I got plenty. You just needed to ask because I got plenty of fat for you guys to use. But they recreate your breast with your own anatomy, and over time it's a very big surgery. But over time, a lot of women report that it is better for them. Over time, it's easier for them to get the implants in the beginning if they just want to do that, it's a faster recovery, but over time they tend to like to be able to use their own tissue. So that's partly why I just didn't know it was going to be that day, and that that's how Yeah, it worked.
00:32:02
Speaker 1: And think about it, I mean, you were dealing with a new diagnosis, so much trauma, trying to make some decisions about how you want your new body to look like in the setting of you know, this was not elective surgery. This is surgery that you're going to have to have with some options for reconstruction, and in that moment asking you to advocate for yourself, that's it's almost impossible. I've been in that situation myself, and I have my own stories of thinking, how could I possibly not have said what I would say for a loved one, what I would say.
00:32:34
Speaker 2: For a friend? Why am I? You know?
00:32:36
Speaker 1: And in the at the end of my book, before I wrote the conclusion, I went through something medical myself where here I am. I'm literally writing about empowering yourself.
00:32:46
Speaker 2: You know you're a freaking in colleges. Yes you are the doctor of doctors and.
00:32:50
Speaker 1: That women need to be empowered and this is how you can do it and don't feel shame about your body. Look how history screwed us over. You can live differently today. And when it came to my own self, even with like speed dial of great doctors, I didn't want to bother anybody. I minimized my own pain, I apologized for it, and I waited. I ended up in the hospital for a week when I didn't need to be there thinking everything was okay because people said it was, you know, just take some valume literally later.
00:33:22
Speaker 2: That's the thing we usually kind of I.
00:33:24
Speaker 1: Did from the very beginning, and yet I allowed this tsunami of other opinions to tell me I was okay when I was not. And I would love to say that I have a perfect answer for what to do in those moments. But I think, if possible, having somebody else with you is really important, someone that you can trust, someone who will really you can say ahead of time, I know you know me in this way, but I am scared of who I will become in a doctor's setting, and I need someone not just to take notes from me. But this is a question I really want to make sure is answered for me. I want to understand rationale for this. I want to I'm nervous about this. Can you help me make sure that this is tackled in this appointment and even at the start of the appointment, saying to the physician, I know we don't have maybe that much time today, this is important to me, and making sure that we set the agenda at the beginning, or at least if it's not gotten to at the very end to make sure that you feel heard. That's really good, and find another doctor if you don't, because if you feel dismissed, if you feel invalidated, if you feel shamed, if you feel guilted, it's not going to get any better.
00:34:31
Speaker 2: That's really great advice. You said you didn't think you had the answers, but I think that you gave us a couple of really good answers. And I have brought some things up since then to my oncologists, to the surgeon, and they've been nothing but receptive. Good.
00:34:48
Speaker 1: So I stand corrected. It can get better, then it can. It can, it can, it can.
00:34:53
Speaker 2: But sometimes the onus is upon us when we are at our most vulnerable.
00:34:58
Speaker 1: Yes, it's hard, it's almost impossible. I mean, I think back to my own what could I have done differently? And I'm so I'm still so mad at myself right and it's really hard.
00:35:08
Speaker 2: I think that part is the part that I still right now. When I was telling you the story, I was embarrassed that I didn't advocate for myself, because here I am telling women, you've got to advocate for yourself. I was embarrassed and I felt powerless, and those two things playing against each other. It makes me want to jump out of a window like it's that, like I just want to fight or flight, like I want to just get out of there. I don't want to feel these feelings, and I think it lingers.
00:35:36
Speaker 1: It does linger, and sometimes there's real trauma from that. I had this thing during COVID where I thought I had foot drop. Basically my foot was not as strong, and I kept seeing different people and they'd say, Oh, but you're so strong, you can run ten miles and I'm like, no, no, something's not right.
00:35:50
Speaker 2: Something's not right.
00:35:51
Speaker 1: And years later it turned out I had a compress nerve that's probably irreparable, even though I had surgery compressed And every day that I take a step, I feel that my left side is weaker than the other. And I can choose to have this narrative which I go down the rabbit hole many times, being mad at myself. Why didn't I say I showed videos, I said I thought I had foot drop. Why didn't I push for that harder? Why didn't I follow my own intuition? And I have to fight the own narrative of being mad at myself all the time. It's hard, exhausting, exhausting.
00:36:21
Speaker 2: It really is exhausting. I want to ask you how we can talk about cancer because we started this with talking about not using the battle ready words, fighting, battling, slaying, whatever, because it puts the onus on the patient that if they don't fight hard enough and they lose the battle, so to speak, that is their fault. Yeah. So when someone brings up, for example, that you know, look, I've been diagnosed with cancer, what have you heard from your patients that responses that are helpful or comforting and responses that aren't so helpful. And I will art with myself. It's hard for me to say because people just want they want to help you, and they want it to be better, and they want to make you feel better immediately. It doesn't matter who you tell. It could be a stranger or your closest best friend, or your mother or your aunt, or your coworkers. But what happened to me constantly is that if I said so, I just need to let you know I'm actually have been diagnosed with stage three breast cancer, and probably fifty percent of the time I would get You're gonna be fine, You are going to be fine, You're gonna fight this and you're gonna win and you're gonna be fine, and we're all gonna be fine. It's fine. And I would hear that, and I'm like, how do you know, because I just learned. This happened to me, Like I just learned about this, and I know what the statistics are, and I certainly know what they are now for black women, which is about forty percent more likely to die than my white counterparts. So am I going to be fine? And there was such an insistence that I felt like I couldn't say anything else about it. What do you hear from your patients?
00:38:15
Speaker 1: So I think taking a step back, that your experience, a patient's experience, no matter the biology, is theirs and theirs alone, and no one can know what it is like to be in your shoes. I think the most important thing is meeting people where they're at, because everybody wants something and needs something different that's entirely related to who they are as a person and what they want for themselves. Maybe their daughter's getting married, maybe they're going for a new job, Maybe they have other things going on in their life that this is going to impact, and they want to make sure that that's tended.
00:38:48
Speaker 2: To as well.
00:38:49
Speaker 1: I think maybe one of the most basic questions is I'm here for you.
00:38:53
Speaker 2: What do you need? What do you need?
00:38:55
Speaker 1: And if you don't even know I'm going to show up in these ways. And if I'm going to leave you this, if you don't want it, throw it out, or I'm gonna help take your kids to school, whatever it may be. But saying how can I best show up for you? I will be there on whatever terms you want me there because none of us have a crystal ball, none of us knows what tomorrow brings. But I will be by your side in whatever dark tunnel you're in, and whenever the sun is shining again, I'll be there to celebrate with you. And I will be there with the lows, whatever they are, because.
00:39:23
Speaker 2: We just don't know.
00:39:25
Speaker 1: But I think we all don't want that sense of unwanted aloneness. And that's what cancer really brings up, is this fear that you have as a patient. And even some people don't you know, won't even touch somebody with cancer because they somehow feel like it's contagious. It is not contagious. For goodness sake, Maybe you just need a hug, right because a lot of times people rush to fix things, and that is for the doctor. Yeah, that's for the doctor. That's for the healthcare team to really figure out. One of some of the harmful things that I hear happen all the time is, oh, my sister went through it, and you know she decided to do this, and why aren't you getting this surgery? And you have no clue when you're talking to someone what actually happened to them. And then patients feel this pressure to know this stage, to know the grade, to know as if they're like reading off a pathology report and is if the person that you're talking to trained for fifteen years in that cancer and it's going to know exactly what to do for your cancer?
00:40:16
Speaker 2: They don't.
00:40:17
Speaker 1: I hate when they're like, oh, what stage is it?
00:40:19
Speaker 2: Okay? Does that help?
00:40:21
Speaker 1: Are you going to now operate on my patient? Stop asking that? Or I saw this product and you really need to use this right, or like if you just sprinkle tumeric in your shampoo, everything's going to be okay.
00:40:34
Speaker 2: Right, okay? Or drink it because or drink it, sprinkle it, rub it.
00:40:37
Speaker 1: I don't know, but whatever it is, everyone's got some solution and it comes from a good place.
00:40:41
Speaker 2: But I think you can be really damaging. Yeah, that is really good, good advice. And I like that you sort of talk about some of the things that can be damaging, because they sometimes those things get into your head. Yeah, and you're like, maybe I should try that, or maybe I maybe I should, but I you The one thing I did know is that whatever medical advances have been made in medicine here in this city of New York, where you have one of the most renowned, actually more than one of the most renowned cancer specialists in the world, that I was going to do that. I was like, cut it out, burn it out, poison it out, do what you gotta do, but get it out of there. And so I did all those things, sixteen rounds of chemo over five months, five weeks of daily radiation which was exhausting, and a double mistectomy, and then I started thinking, because that's when my mental state started to go down, was actually after I was in the midst of the crisis. And I always say this in my family knows I'm better in a crisis. But it's the longevity of all this that with the most common breast cancer, if you're not already in menopause, you have to take pills for the next seven to ten years to try to kill your hormones, which is also feels like sometimes killing you right, because you're you're different and you're going through all this. But then I had this realization and it really freaked me out. And we'll end with this. I looked at my ancologist after I'd gone through a year of treatment double mist deckt tomy and started doing physical therapy, and I walked in one day and I said, Doc, Am I cancer free. He's like, you're cancer free? How do you know? How do you know? And he looked at me, and he could tell that I was like searingly, like looking with daggers in his face. I'm like, does my blood tell you something? Does my He's like, do you have any symptoms that indicate otherwise? And I said no, But how do you know? How do you know if you're cancer free? When you have this cancer that can be very sneaky, as I have heard a thousand times it can come back, and I have heard from patients where it did come back. So how do we know?
00:43:06
Speaker 1: Yeah, well, I would probably offer a different answer, and one that's more unsettling but really speaks to the existential nature of what it means to be alive.
00:43:15
Speaker 2: We never know.
00:43:17
Speaker 1: Do we know what's going to happen when we walk out of that door. No, But we can choose to do everything in our power to give us the best possible outcome. And that is what your doctor is offering you, the best of modern medicine to dramatically decrease the risk that this cancer will ever come back. We can throw statistics at people, we can give them the best of medicine, but at the end of the day, we don't know. And I think that that is what makes cancer such a challenging diagnosis, is that for all of us, it brings up the reality of what it means to be alive, and it really throws into high relief that every day is a gift. We can hate aging, but on the other hand, those wrinkles are a gift, Those gray hairs are a gift to the alternative, right, And we know what, what's the one statistic we all know? We have one hundred percent death rate, all of us, right, And so I am grateful that you are getting such spectacular medical care, and to the best of our knowledge, you are indeed cancer free. But I don't know about myself, about any of us sitting here today, and so we have to make choices about who we want to surround ourselves with the type of medical care. We want what we do each and every day for ourselves, and try to approach that with grace and humanity for ourselves and everyone else around us.
00:44:29
Speaker 2: Doctor Elizabeth Coleman, let's be clear, you are amazing. Thank you, thank you for having me
