The Dr Louise Newson Podcast - 14 - Breasts, bodies, and belonging: a conversation with Jean Hannah Edelstein

Starting point is 00:00:02 On the podcast today, I've got Gene Hannah Edelstein, who's written this book called Breasts. We do talk quite a lot about breasts in the podcast. We also talk about her having a bilateral mastectomy and also a hysterectomy and oophrectomy. The most important thing I think from the podcast is our conversation talking about how to be an advocate for yourself. Choose the right doctor and choose the right treatment for you too. Super excited to have you on the podcast today, Gene. I've got lots of one to talk about but the first thing is about your book actually

Starting point is 00:00:36 and it's called breasts like I have never had a book called breasts before in my hands and a relatively brief relationship so I just thought we talked a bit about breasts initially because I'm relatively flat-chested and I've spent my whole life wishing that I had bigger breasts but I've had lots of patients

Starting point is 00:00:57 who are really jealous of me being very flat-chested And we're all different. We're different shapes, we're different sizes. And certainly, as a teenager, often, we go through lots of body dysmorphia where we're really wanting to be something different. And it's taken me decades to realize this is me, this is my shape. Like, I'm never going to change the size of my breasts, really. But breasts mean different things to different people, don't they?

Starting point is 00:01:23 And different cultures as well, actually. So when we're talking, this is very general. This is just like our opinion. But could you just talk me through? Like, we'll come on to your personal story, but like, what have your breasts meant to you from when you were a young age? Yeah, I mean, I think that's a really good question.

Starting point is 00:01:39 I grew up in the US, as you can tell from my accent, but my mom is from Scotland, so I'm a dual citizen. So I did spend a lot of time in the UK when I was young as well. And I think, you know, I'm 43, so I grew up in the 90s, which I think was like a particular time. for girls where there was a lot of talk about women's bodies, perhaps like, you know, sort of like moving towards a world where there was less modesty, but there was at least in the U.S. and in the U.K. to some extent as well.

Starting point is 00:02:11 But there was also a lot of shame coupled with that. So I would say that I remember as a teenager, growing breasts, being interested in them, but also being ashamed of them and being aware that dressing to cover them, or conceal them felt important in order to avoid negative attention from men, boys, but also especially adult men that, you know, as I went through puberty and had a more visibly like female adult body, even though as far from being an adult, that I started to receive that kind of attention, which made me really uncomfortable. But I also felt very responsible for it.

Starting point is 00:02:51 I sort of felt like a little bit, I would say, you know, that like it was a burden of being in a female body to receive this attention and I had to do my best to avoid it. But if I didn't avoid it, then I felt often guilt and shame around that. I mean, I think one thing that I, you know, I'm the same age as Britney Spears approximately. And during her heyday, as she was emerging as this teen pop star, there was so much conversation specifically around her breasts and whether or not she'd had implants at, you know, and she was like 15, 16. And it was totally, I was so, I was both sort of fascinated and horrified by it because it was like this media narrative was telling me that my body or the body of someone, my age, was sort of up for public consumption and discussion.

Starting point is 00:03:42 And then at the same time, there was this huge emphasis, certainly within the U.S. in this narrative, that she was a virgin, you know, that she had never had sex and that she was saving herself for marriage. So that was very confusing as well because it was this presentation of this teenage girl, same age as me, as an object, as a sex object, as a body to be analyzed and discussed by other people, but also a pure body. And that, I think, was just a very kind of strange dichotomy that was just sort of omnipresent in the way that I thought about bodies and I thought about sex and I thought about my body and my breasts. And my friends, I think, to greater or lesser extents to. So, yeah. It's really interesting, isn't it?

Starting point is 00:04:28 I've got three daughters. And I think I'm more protective because of them, really, and some of the things that they've had to endure or comments that people have made to them. It was one thing people making comments to me when I was growing up, but somehow it's a whole new level when it's my children that people have commented on them. And it's really, like, I don't know, maybe because I'm a doctor,

Starting point is 00:04:52 people are like anatomical bodies in my mind, you know. It's really, I don't judge people by the size of shape, what they are. But actually people do. And there's a lot of pressure on society, I think, sometimes. If you haven't got the right breast size or whatever, and I know just recently, trans-brived bra and realizing that they're so much bigger than they were when I was younger. And people are big of breasted than they used to be, whether that's a good thing or a bad thing or why it is, is a whole different conversation,

Starting point is 00:05:25 but it's how people feel. And I know my children have gone from ridiculous push-up bras with the most padding to try and get the biggest cleavage. And now they don't actually wear bras. It's completely opposite directions, actually. And I don't know whether that's just because they feel freer with their bodies. You know, lots of their friends don't wear bras. It's, we're not, we're not changing the shape of our breasts for other people.

Starting point is 00:05:51 people to comment or trying to be something we're not. I don't know what it's like in the U.S. Yeah, I mean, obviously can't speak to your daughter specifically, but I do think it's interesting that breasts are seen as almost sort of separate from the body in a, like, as if that they can, the way that they're worn, let's say, changes according to fashion. And I think, you know, I remember from a young age seeing Vogue every now and then would have a story which was like, breasts are in and then, you know, the next season,

Starting point is 00:06:19 breast are out and thinking like, like, well, you know, I still have them. So yeah, yeah, yeah. What does that all mean? And so, yeah, to some extent, certainly like the 90s were the Wonderbra era. And so everyone was trying to push them, well, not everyone, but, you know, in the U.S., Victoria's Secret, I remember, you know, as a teenager going towards my late teens, starting to shop in Victoria's Secret with friends. It was very clearly, in retrospect, clearly being marketed to teenage girls. Like, they knew what they were doing. So, you know, and I think it's because when you're, when you're born, you don't, like obviously you have the, you know, the anatomical configuration that will cause you to grow

Starting point is 00:07:00 breasts, but you don't have the breasts. And they're the only body part that kind of emerge like that and change your body dramatically. And so I understand why both people feel, you know, a certain level of detachment from them that they don't from an arm or a leg. And also the way that society views them as kind of malleable in a way that other body parts are not. And I mean, I remember thinking as I got into like my, you know, university years and then into my early 20s, then I did have quite large breasts thinking, which I got, you know, both positive and negative attention for and thinking like,

Starting point is 00:07:35 oh, I wish I could just kind of like swap them occasionally for a smaller set so that when I go to the gym or don't want this attention, then I can do that. And then because that was kind of how like the cultural discourse or the fashion discourse talked about breasts, but the reality was, of course, I couldn't trade them in or I could, but then it would have, you know, required a lot of plastic surgery. And then I think what was interesting, I moved to London in 2003 to go to graduate school, and that was very much the heyday of a particular kind of media narrative around plastic surgery.

Starting point is 00:08:08 Glamour models like Jordan and Jody Marsh were very prominent, and there was constant discussion about the breast size of various celebrities, magazines I'm trying to remember, like closer where they would run paparazzi photos of female celebrities and like circle, you know, like what size their breasts were. Did they look bigger this week? Did they have a boob job? Lots of, you know, just tabloid journalism around, you know, specifically focused around the size of women's breasts. It's really interesting.

Starting point is 00:08:41 And so moving forwards, obviously you've written your, book called Breast. It's not just about you and your breast size and how you had various experiences. Tell me what happened. So when I was 41, so a couple years ago, I was diagnosed with early breast cancer, stage zero, DCIS, ductal carcinoma in situ. You can correct me if I'm pronouncing that. Yeah, that's exactly right. Okay. And that is the earliest stage of detectable breast cancer. I live in, so I was in London for nine years and then I live in the United States now. And so here, because I work for a large corporation, I do have very good health insurance. And because of that, I was getting regular screening for breast cancer because I was considered high risk because I have a genetic syndrome

Starting point is 00:09:30 called Lynch syndrome, which increases risk of a lot of different types of cancer. So I went for my normal mammogram, as I said when I was 41, really just expecting it to be the usual. And that was when they diagnosed me with this early breast cancer. And then I was quite quickly told that the solution to that would be to have a mastectomy. And so the book is called breasts, a relatively brief relationship because in the end, I only had breasts for about 30 years. And then I had a mastectomy in February of 2023. So you had both your breasts removed.

Starting point is 00:10:08 That's correct. So I had, the cancer was found on the right side. It was quite widespread. So a lumpectomy was not an option because it was just throughout the breast. We just, I had the option of keeping the left breast, but because of my elevated risk, my surgeon was sort of inclined towards me having it removed as a preventive measure. Also, because I did by then, this was post breastfeeding two children, I had very large breasts. I think I was a 30F or G.

Starting point is 00:10:43 at that point. And so, I can't remember, maybe 32. Anyway, in order to have a single mastectomy and then a reconstruction, I was going to have to have significant surgery to the left side anyway because reconstructing a breast of that size was just not feasible. So I thought about it, and it seemed very clear to me, I didn't want to have, you know, I didn't want to go through any more of this. I didn't want to have this concern again. And also, a relative of mine had had the only one side done and was pretty unhappy with the results. So that also influenced my decision. So you have subsequently had reconstruction, but that wasn't initially, was it? So initially you went from having breasts to no breasts. That's correct. So yeah, it all felt, you know, it was very swift. I had the diagnosis

Starting point is 00:11:32 at the end of December. I had the surgery in mid-February. So it was about seven weeks, I think, seven or eight weeks between diagnosis and surgery. And, you know, and I'm sure there will be folks listening to this who've gone through mastectomy as well. It's very shocking. It's an amputation. And of course, I also know that I was fortunate compared to many breast cancer patients and that the surgery was sufficient. I didn't have to go through further treatment, but nonetheless, it's just very shocking to have this part of your body cut off. And I think particularly because I had had this kind of complex relationship with my breasts. And it has been interesting since publishing the book. I have, of course, you know, had the privilege of speaking to a lot of women

Starting point is 00:12:17 about their breasts and how they feel about them. And there's a, you know, a hugely diverse range of opinions and experiences. But for me, I think I had spent this time feeling sometimes tortured by them because of the negative attention I received. But I had come to terms with them over the years and I was in a, you know, I was in a good place with my body and my breasts. I had breastfed my children. That was in itself, sometimes a difficult to experience, but ultimately when I was glad that I had. And yeah, I had this like feeling of like ease and happiness in my body.

Starting point is 00:12:49 And so it was, I just felt very angry to be told that I now had to have them removed. So I went and I went and I had the mastectomy and partially because they wanted to, you know, though they didn't believe that the cancer had spread, they wanted to be absolutely sure of that from the pathology from the surgery before doing reconstruction. Also, because my breasts were so large, I think doing reconstruction in one surgery with the mastectomy wasn't really sort of technically that feasible. So, yeah, so I had expanders, which are placed in the area where the reconstruction is happening, which are essentially temporary implants that are kind of like a balloon, where they start out very

Starting point is 00:13:31 small and then over time you go back to your surgeon's office and they inject saline into them to make them slightly larger i mean it's a very strange it's so strange um you know i'm sure you're familiar with this but like for someone i'm you know not a physician i don't work in the health care industry so you go in and they literally inflate you and then they say well how does that look and then at some point you say okay that seems fine and then they uh you go for a second surgery where they replace the temporary expander with a permanent implant. So it's kind of like having a dress made, I guess. But I mean, that's the closest thing I would describe it to like going to a tailor and be like, can you hum that a little bit more? But it's just such a strange and kind of

Starting point is 00:14:16 disembodying experience. And did you feel well supported throughout that process? Yeah, I mean, I would say a mixture. I was very well supported by my family and my friends. My husband lost his mother to breast cancer before I met him. And that was a very traumatic episode in his life. And so I think the impact on him of hearing my diagnosis was very hard, but he was incredibly stalwart and supportive throughout the whole process. I mean, I think I don't really like to talk about my sex life, but obviously, like, that was something that came into it was how that would affect that part of our lives. And should I be concerned about, should my thoughts around reconstruction or mastectomy concern like how he would feel. And, you know, it was quickly he just was going to support whatever

Starting point is 00:15:01 choices that I made and has never made me feel any different in that way. And so that was really important. My family was also very helpful in terms of, you know, coming in and helping with the kids when I was going to the surgery and so forth. In terms of the healthcare providers I worked with, I would say it was somewhat mixed. The surgeon who diagnosed me was amazing. when you have a mastectomy with reconstruction, at least here in the U.S., you work with both a breast surgeon and a plastic surgeon. They work as a team. After I met with the breast surgeon, I then went on what I would describe as kind of like a Goldilocks-like shopping trip for a plastic surgeon to find the one that felt right for me and what I wanted. And the first one I met with, I found terrible.

Starting point is 00:15:51 his approach seemed to be very he was just very negative about what I could expect and also just kind of I just felt very dismissed by him that he sort of like no acknowledgement of like what I was actually no acknowledgement he was clear that he had a cosmetic practice in his surgery as well but like no acknowledgement that was not why I was there I was not there with you know a sense of excitement about having this surgery I was like very unhappy about it and so he was definitely not the right person And he also had me watch a video, which is one of the craziest things I've ever seen, which was, you know, before he even came in, his assistant was like, oh, watch this video. And the video was just felt a very sort of like preachy video to women about like, now you're going to have a breast reconstruction and you should just be accepting of what happens and you'll be happy at the end. And there was like a scene of a woman being spoken to by a male doctor. and she was just, you know, just nodding. And then the final scene was a woman who I would estimate,

Starting point is 00:17:00 was in her late 60s, early 70s, washing a dog in a garden with a home with a voiceover about like, you know, your life will return to normal and you'll be so happy. And I was just kind of like, what? Whose idea was this? And I think a lot of health care providing. especially surgeons to an extent, they're so technically excellent, but they don't necessarily have a lot of space in their brains to also think about the people who they're performing the

Starting point is 00:17:31 surgery on. And ultimately, you know, I thought about it a lot. And I was like, I would rather the person doing the surgery be great at surgery that'd be someone I want to hang out with. That's okay. We don't have to be best friends. But I just do need them to see me like as a person. The second plastic surgeon, so I rejected that one. The second one I went to see, that was kind of funny. because he was much warmer and friendlier, but then he started telling me that he would give me some free liposuction while I had the procedure done. And that was very funny because he,

Starting point is 00:18:01 so with reconstruction, you have the implant put in and then many women have a fat transfer, which is when they do some liposuction, another part of your body to get some fat, which they then place sort of above the implant to fill it out and make it look more natural because you don't, because you no longer have breast tissue, you can sometimes see the outlines of the implant.

Starting point is 00:18:20 So that itself is very normal and I expected it, but he was sort of describing it. He was like, and, you know, I can take some extra and just like throw it away. And I remember my husband and I were just kind of like staring at him like, what, what? And he said it like two or three times and he was like, you know, I'll charge it to your insurance because, you know, because this is a cancer surgery, insurance would pay for it, but a cosmetic surgery they wouldn't pay for. And I was just like totally bewildered. And then I thought, oh, he's trying to cheer me up with by offering some free cosmetic surgery, but he doesn't know anything about me.

Starting point is 00:18:54 Like, I don't want cosmetic, you know, like, I would not choose to do this. It's very judgmental, isn't it? It was very judgmental and it just felt quite sort of, you know, a little bit, you know, just making the assumption, well, all women want to be thinner. So this woman will also want to have life-liscusction, you know, and I'm a very, let's say, average-sized person, but like, no, I didn't and there wasn't, you know, so again, I just felt like this, this person

Starting point is 00:19:21 does not see me as a person. The third surgeon who I found, you know, both did excellent work and I felt he was at least making an effort to get to know me and so I felt comfortable working with him. And that is really important, you know, as a doctor, I really keen for patients to feel that their whole person, their mind and their body and all their organs that looked after. And so much in medicine, it becomes very siloed. And that's very difficult for that person because you do want to be treated as an individual. And that's crucially important, anything we do, whether it's a surgery or medicine we're giving or making a diagnosis or what have you.

Starting point is 00:20:00 But since you've had the mastectomy, you've also had two other big surgeries as well, haven't you? That's true. So actually in the week, a few days before the book came out, I had a hysterectomy, including, and I can never pronounce this, ophorectomy. ovarian, had my ovaries removed as well. So Lynch syndrome is interesting because it's, first of all, not that well known, even though it's actually very common. I think it's about one in 300 people have one form of Lynch syndrome. It's primarily associated with colon cancer. And having this surgery was something that I was told when I was first diagnosed with Lynch in 2014

Starting point is 00:20:40 that I should have. And I was 33 at the time. And I remember, you know, going in for this meeting with a geneticist and it just feeling like it accelerated from zero to 100 kilometers an hour from, oh, you have Lynch syndrome to you should have a hysterectomy. And I just, you know, was completely overwhelmed. I couldn't believe it. I pushed back and I was able to, for many years, get some testing done to, you know, to see if I had any signs of early cancer, but was frequently reminded that the tests that are done for ovarian and uterine cancer are not that effective and especially ovarian cancer is usually only detected when it's very far along. And so because of that, this surgery was recommended whenever I completed my family.

Starting point is 00:21:26 So, yeah, so this April, late March was when I finally decided to do it. Yeah, which is a big decision, especially when people have preventative surgery. It's almost harder sometimes to make that decision and it is very individual. but obviously having your ovaries removed at a younger age also means that many of your hormones have been removed as well. So you are taking some hormones, aren't you? Yeah, and I mean, I will say I was very scared of the ovaring removal. You know, I think it was presented to me originally all those years ago.

Starting point is 00:22:05 It's just kind of like a quick and easy solution to this risk. And it really weighed very heavily on me because I knew what the actual implications of early menopause would be. Then when I had the breast cancer, there was some concern whether I would be able to go on on HRT. But fortunately, I was able to connect with an excellent doctor who, for people with the kind of early stage breast cancer, I had the risk of increased risk of a recurrence is really,

Starting point is 00:22:33 is not significantly increased by hormones. And as she said, she was more concerned about the implications for my cardiac health, my bone health. than she would be for recurrence of the breast cancer. And it's so important to have that conversation, really, especially as you're young as well. And certainly in many countries, US and the UK,

Starting point is 00:22:58 we know that a lot of young women who have their ovies removed are not offered HRT. They're not offered estrogen. They're not offered testosterone. They're not offered progesterone. Yet we've known for decades that there are benefits to health, but also to well-being and symptom control as well, especially for young women.

Starting point is 00:23:18 So it's really important because a lot of women, even now, have their ovaries removed and don't realize that they're going to be menopausal. I mean, it's obvious when you know it, but if you don't know it, people don't always join the dots. Exactly that conversation, actually, because I have some friends who are physicians, girls who I grew up with who are now women

Starting point is 00:23:39 who have been doctors for many years. And I mentioned that to them and they said, yes, absolutely. And I have to say I was frustrated because I had to initiate the conversation about HRT. And I really had to make several phone calls, send messages before I was able to get this consultation with this doctor who works within this leading, world leading hospital where I received my treatment. It's amazing. I'm very lucky to receive, you know, care from them. but I was kind of shocked to be honest that I felt like it should have just been part

Starting point is 00:24:14 of the pathway there that if someone is having their ovaries removed then of course they need to have this consultation but I really had to get a lot of back and forth including me saying okay I just won't do the ovaries in this surgery I'll delay that for more years before they were able to sort of like connect the dots

Starting point is 00:24:31 and say oh okay well you can you can speak to this doctor I've described myself as someone who as I said I have these friends who are physicians I would say I'm more sort of like comfortable in a hospital environment than a lot of people are. And I'm well educated in my condition. And still, I had to fight for it that much. And so it makes me feel really concerned about other women, to your point, who don't even know that they're about to go into menopause. They don't know what to ask for. And I'm so glad that you use your platform to talk about it,

Starting point is 00:25:02 because I think we just need to talk about it more. You're absolutely right. And I think, you know, we learn from others. And that's why. it's so important to share experiences and I'm really grateful for you to being so open about many experiences that you've had but also that you did say about you know choosing the right doctor for you and I think that is also really important

Starting point is 00:25:23 because a lot of women I consult with have often been really let down by the medical system and they've been given wrong information or information that's just not right for them or treatment choices that they don't want so I think this is really important as we move forwards that people feel comfortable with the decisions that they're making.

Starting point is 00:25:40 And it's done at the right time because I think that's important. Everyone thinks that a treatment offered to them, they have to either take it now or not. And of course they can delay treatment choices. So it's great you're being so open. But just before I end, I'd really like three tips. And one of the things that comes through a lot from the book

Starting point is 00:26:00 is you're a real advocate for yourself and you're doing what's right for you, not for others. How do you think, you know, what three things do you think would be really useful for people to learn from three messages so that we can all be advocates for ourselves for our health? Oh, that's such a good question. Number one, take the tests that are offered to you. A lot of women are very afraid of mammograms, which I completely understand. They're really uncomfortable. They're unpleasant. They can feel violating. But nonetheless, if you were offered a mammogram, then do take it. And also, if you were diagnosed with

Starting point is 00:26:37 dense breasts, then ask for an ultrasound in addition to the mammogram. That's really important. And if you're not offered one, but you understand that you are of high risk because of your family history or genetic history like mine, then ask for it. Ask for what you need. So I think that's number one. And if people, hospitals say no to you, keep asking. Because actually, I've often found, as I, you know, said with the example with HRT, repeated asking does get you what you want. You just have to pursue and not be told no. The second thing I would say is get a second opinion. I think we can feel very intimidated by health care providers or physicians who tell us things that are upsetting or frightening. You don't have to do anything that just one provider tells you to do.

Starting point is 00:27:27 For me, with my diagnosis, of course, the mastectomy felt very dramatic. So I went and got a second opinion encouraged by the surgeon who diagnosed me initially. And the second opinion was basically identical to the first opinion, which made me feel much better about the course of treatment. And I know some people feel like they're going to insult their doctors by going out and getting a second opinion. And I think a good physician will never be, take it personally if you want to double check their views within one of their colleagues, essentially. And then, you know, I think my third. tip would be pay attention to how you feel emotionally and don't and pay attention to your intuition

Starting point is 00:28:12 actually. A friend of mine recently wrote a really excellent book on intuition. And, you know, one of the points that she makes in that is that women are often sort of, you know, through our lives told to doubt ourselves, told that we're being hysterical, told that we're being too sensitive and so forth. And I think through this whole process by learning more to listen to my intuition about how I feel. I haven't been able to control the process, but I have felt like more of an active participant in it rather than an object in the process. So important, an active participant. I like that. Thank you ever so much, Jean. It's been really informative, so thanks for joining me today. Thank you so much, Louise. This is great.

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The Dr Louise Newson Podcast - 14 - Breasts, bodies, and belonging: a conversation with Jean Hannah Edelstein

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