Program: Life without boobs: Meet the women staying flat after breast cancer

Charlotte
It wasn't like I felt tortured about the decision. It just felt like we need to deal with the cancer and then when that's gone, I just won't have any breasts.

Kate
I was just like, they're trying to kill me and I want them gone.

Aarthi
I was a mum of two teenage boys and I really wanted to model to them what it meant to have a positive body image with an asymmetrical body.

Kate
One of the things she said to me was, if you meet someone in the future and you no longer have breasts, how will you feel if that's the barrier to you having a relationship with them?

Yumi
Boobs. Big ones, small ones, uneven boobs, jiggly boobs, perky ones. No matter their shape, size and texture, as a society, we're obsessed with them. They are fetishised, romanticised, criticised, sexualised. They nurture, they titillate. They let us know when the aircon's on too bloody cold. They hurt, they please. Sometimes they get in the way. But what happens when your breasts make you sick? What's it like to have them removed and not reconstructed? Every year in Australia, around 20,000 women will be diagnosed with breast cancer. Of those, around 40% will need a mastectomy, surgery to remove the breast. According to the Cancer Council of Australia, almost a third of women who have a mastectomy will choose to have some kind of reconstruction. The reasons why a woman may opt to stay flat or reconstruct are complex, but cost, access to services and worry about further recovery time will play a part. In this episode, you'll hear from women who have had either one or both breasts removed because of breast cancer and decided not to reconstruct. It brings up a whole lot of questions about breasts, what they mean as a woman out in the world, and what changes when your breasts change. I'm Yumi Stynes, ladies, we need to talk about going flat.

Aarthi
I got dressed up in some nice lingerie and set up the camera and took some self-timed photos of myself.

Yumi
This is Aarthi. She's 45 and last year, after being diagnosed with breast cancer, decided to do a sexy photo shoot in her bedroom.

Aarthi
I had lost all my hair from the chemotherapy, so I was wearing a

Yumi
wig. Aarthi wanted to commemorate her boobs because she was about to have surgery to have one removed. Being

Aarthi
a photographer as well, I thought, oh, this could be actually fun. And it also felt like, well, even though this is me with two breasts, one of these breasts is toxic, you know, it's killing me. So it was a really mixed sort of turmoil of emotions at that time.

Yumi
Around six months earlier, Aarthi had noticed a lump behind the nipple on her right breast. It turns out that lump was cancerous.

Aarthi
So from diagnosis to starting chemotherapy, it was about two to three weeks from memory. It was all very, very fast.

Yumi
After her chemo treatment was finished, Aarthi's tumour had shrunk, but she was told she'd still need to have a mastectomy to remove that right breast.

Aarthi
Pretty confronting, but at the same time, I'd had that time of going through chemo to sort of mentally prepare myself. You know, the tumour felt pretty large and I'd heard women who'd had a lumpectomy and then ended up having to go back for extra surgeries anyway, because the margins hadn't been cleared. So yeah, I think I was pretty prepared for a mastectomy.

Yumi
Okay. Was any consideration given to having a double mastectomy at this point?

Aarthi
At that appointment, when I was told I would need to have a mastectomy, I asked the question, well, can I have a double mastectomy? Because I don't want to have to go through this again. So I asked, look, if I was to have a double at this time, what would that mean for lowering my risk?

Yumi
Aarthi had already gone through genetic testing to see if she carried the gene for breast cancer known as the BRCA gene. If a woman has the BRCA gene, the risk of her getting breast cancer in her lifetime is over 70%. Thankfully for Aarthi, her genetic testing came back clear. So doctors recommended just the single mastectomy.

Aarthi
I was pretty comfortable with the decision just to have the single mastectomy.

Yumi
Okay. So there's a plan in place to have a single mastectomy. What discussion was there at that time around breast reconstruction?

Aarthi
So for me, I was pretty clear from the get-go that I wasn't super keen on an autologous reconstruction.

Yumi
An autologous reconstruction, also known as flap reconstruction, involves taking the tissue from one part of the body to rebuild the breast. In Aarthi's case, doctors had suggested taking tissue from her abdomen or from her back.

Aarthi
I'd had a caesarean for my first child and had taken a long time over the years to sort of get back to being physically fit and active and just felt really kind of strong in my own body and just didn't want to do anything that might compromise that.

Yumi
The other option for Aarthi was to have an implant.

Aarthi
The breast care nurse told me that if I was to have an implant, I would still have the option of going flat later on if I didn't like how the implant looked or felt. Right. However, if I did it the other way around, so I went completely flat, just because of the way my body shape is, it would be more difficult to go then to having some form of reconstruction.

Yumi
Aarthi spent time deliberating this choice, to go flat on one side or reconstruct.

Aarthi
I had lots and lots of conversations with my husband about what it would mean to have only one breast and how I would feel having one natural breast and then one that was a reconstructed breast and thinking about the way that it would sit on my chest versus the way that my other breast is sort of naturally shaped. I was a mum of two teenage boys who I'd been able to breastfeed and I really wanted to model to them what it meant to have a positive body image with an asymmetrical body and being really confident in that.

Yumi
Aarthi also had lots of chats with her breast cancer nurses. Said, look, just give it

Aarthi
to me straight. If I have a reconstruction, what are the chances I will need to have further surgeries and just be in hospital for longer? And they said, in your case, because you still have to have radiation, there's at least a 50% chance. I just went, okay, no, I just don't want that for myself. Every surgery I have from here on in needs to be with the purpose of either saving or prolonging my life.

Charlotte
It is a very privileged role to be asked to sort of walk alongside someone in what is often, you know, the most confronting, challenging part of their life.

Yumi
This is Dr Charlotte Tottman. She's a psycho-oncologist with a private practice in Adelaide.

Charlotte
So a psycho-oncologist is just sexy language for a clinical psychologist who specialises in cancer-related distress.

Yumi
So Charlotte counsels cancer patients through the transition from their old life pre-diagnosis to a whole new reality post-diagnosis.

Charlotte
I call it the snow globe effect. It's like you completely shift your perspective in terms of what your values and priorities might be, what they used to be and then what they are post-diagnosis and treatment. And so things that didn't used to matter now do matter and things that mattered before maybe don't matter anymore.

Yumi
Seven years ago, Charlotte the therapist suddenly became the patient.

Charlotte
We were on holiday and I was putting on some sunblock and my hand just grazed the underside of my right breast and I thought that feels like there's something there that wasn't there before.

Yumi
Once she got back home, Charlotte went to get the lump checked out by her surgeon Andrew. He had some bad news.

Charlotte
I'm not going to pull any punches, Charlotte, you have breast cancer.

Yumi
Things moved quickly after that.

Charlotte
You literally go from you've got breast cancer to now this is what we're going to do about it. And you know, my brain was in a washing machine.

Yumi
Doctors recommended surgery and wanted to move fast.

Charlotte
So we opted for a bilateral, what's called a radical mastectomy, which is when both breasts are removed. We didn't do nipple sparing or skin sparing. Andrew and my oncologist explained that every little bit of tissue that you leave behind presents some risk.

Yumi
At this stage, Charlotte didn't know if she carried the Brachygene. Those results take eight to 10 weeks to come through and her surgeon wanted to operate straight away. They decided to go ahead and remove as much tissue as possible from both sides.

Charlotte
We were all about no risk. No risk. It wasn't like I felt tortured about the decision. It just felt like we need to deal with the cancer. And then when that's gone, I just won't have any breasts.

Yumi
And Charlotte, how did you know that you didn't want to have a reconstruction?

Charlotte
Mostly for my life, I didn't wear a bra because I didn't need one. A teeny weeny breast. So I think I thought small breasts, small loss, and that not having breasts or the loss of small breasts would not be as big a deal as bigger breasts. And I certainly do have clients who have proudly and delightfully had quite large breasts and have said to me, you know, my breasts were spectacular and my breasts were tremendous. That's not how my breasts were. I have recognised that small breasts doesn't equal small loss.

Yumi
The day after her surgery, Charlotte looked at her new body in the hospital mirror.

Charlotte
And I take my hospital gown off. The swelling had started, the bruising had started. I was standing up. And when we talk about a flat chest, oh my God, it's such a misnomer. It's not flat. You know, it's not the Himalayas, but you run your hand over it. It's very lumpy. And in those hours of the first day post-op, it was, you know, pretty, it was pretty confronting.

Yumi
In the days and weeks after surgery, Charlotte had to do what she'd been recommending to her clients for years.

Charlotte
Stand in front of the mirror every morning after a shower or naked, put your hands above your head and really look at your chest or at your scars for about five seconds, which sounds like a really short time, but actually when you're doing that, it feels like forever. And you do that every day to really consciously observe. And so that's challenging the gaze avoidance tendency.

Yumi
One thing I wanted to ask you was whether your breasts were incorporated into your sex life.

Charlotte
They were a big part of our sex life. I talk about sex and adjusting to changes after cancer as about learning new dance steps. And I quite often reference the fact that I reckon most of us have got a set of dance steps, might be about a dozen, might be more, might be less. And I reckon maybe about three of our dance steps were probably to do with my breasts. And they were a very important part of foreplay. It was how I got ready to orgasm. And so without those parts of my body, without my nipples, our sex life has never been the same. It's not bad. We've found our way back and we've got a healthy post-cancer sex life, but oh boy, do I miss that sensation. And I miss the look and the feel and I miss what Rob would do with my breasts and how that would translate into like arousal for me.

Kate
One of the things she said to me was, if you meet someone in the future and you no longer have breasts, how will you feel if that's the barrier to you having a relationship with them?

Yumi
This is Kate. She's 38 and was diagnosed with breast cancer last May. The cancer was in her left breast and her surgeon recommended a mastectomy on that side only. But Kate wanted both of her breasts gone, much to her doctor's horror.

Kate
I thought this body part has betrayed me. I don't want to sit here and worry for the rest of my life that it's going to betray me again, that it's going to come back. The other thing she said to me was, what if you change your mind about having kids? So I made a decision a long time ago. I didn't want children. And she said, what if you change your mind and you want to breastfeed? Wow.

Yumi
So you had these two phantoms, phantom children and phantom future partner. Exactly. You needed to keep your breasts to please or feed. How did you feel about your boobs before cancer?

Kate
They were a bit annoying. I had very big breasts, a double D or an E. And I used to joke that I would just put a cup on my head and if it fit my head, it would fit my boobs. And that was how I bought bras.

Yumi
That means you had two big heads on your chest. Yes. That's a lot. Yeah. Kate eventually moved from the private system to a public hospital for treatment. First, she needed to go through chemotherapy and then she would have a mastectomy.

Kate
And the surgeons were all male in that team and they never questioned. They said, okay, we could go single mastectomy if you want to do recon or if you want to have one remaining breast. And I said, no, take them both. And I didn't need a rationale for them. They just said, yeah, sure. No worries. It's your body.

Yumi
Is that right? They just accepted you saying what you wanted. Yep. Did you ever consider getting a reconstruction?

Kate
No. No. They gave me time to think about it, but I had already made a decision that recon wasn't for me in part because of all of the things that I wanted to be able to do, recon just would have been a barrier or made those things harder.

Yumi
Kate wanted to be active again, to go back to horse riding and swimming. She didn't want more medical intervention and a longer recovery time. It was like her boobs were the boogeyman.

Kate
I was just like, oh, they're trying to kill me and I want them gone. And I just, aside from the fact that I needed to wait to get through chemo and recover from that, I knew the signs behind that and could come to terms with it, but it still, it was very scary living those months with these cancerous breasts.

Yumi
So you felt like there were enemies?

Kate
Yeah. Yeah. And I couldn't look at them. I was building a tiny house and I decided not to install mirrors in my house that whole time because I just didn't want to look at my body. I avoided mirrors, avoided my reflection as much as possible. And so the moment that they sat me in the bed in pre-op, I was just like, I'm here. They're not going to change the plan at this last moment. So I knew I was safe. I knew I was going to get what I needed to feel safe moving forward in my life.

Yumi
After her double mastectomy, Kate woke up groggy and in pain, but she'd prepared to face her new body in the mirror.

Kate
It was like a weight was lifted off my shoulders, no pun intended, that this thing that had made me feel like I needed to make myself smaller was now gone. And I sort of, I was walking into a new version of myself and a version that had cut away the cancerous, sick, harmful, murderous part of my body.

Yumi
Kate, have you faced any judgment for staying flat?

Kate
A little bit. There was an incident going into work one day. I commute on the train and there was a, you know, younger couple sitting across from me and the guy turns to his girlfriend and says, is that an it? And I was never this gutsy before cancer, but since cancer, it's just kind of like, seriously, who gives a shit? Just speak up, speak your mind. And I stood up and I said, not that it actually matters, but I've lost my boobs to breast cancer. And I got off the train and that was it.

Yumi
Dr. Charlotte Totman has seen firsthand the importance our culture places on boobs.

Charlotte
We all grow up with those gender stereotypes and certainly not having breasts is really confronting one of the most fundamental stereotypes. It's reinforced in the way that we teach our little boys and girls about what it is to be a boy and a girl and how men and women relate and what's normal and how people are raised in families.

Yumi
When we see women with no breasts, it can be confronting.

Charlotte
I think it looks like loss. I think it looks like the absence of something that for most of us we like and we hold dear. You know, you think about symbolism, what breasts represent. They represent femininity and they represent sexuality and they represent motherhood and often they're soft and squishy and they feel nice.

Yumi
When you're counselling other people going through this, what are your recommendations post-surgery to adjust to this new body?

Charlotte
To take time out for yourself fundamentally. I mean, I'm a great proponent of do less for longer. Take some time. A lot of breast cancer happens in people's middle years when they've got a whole lot of obligations set up and for a lot of women, they've never, ever, ever had the chance to just take some time out of the rat race and to prioritise their physical and psychological wellbeing and you can't rush this stuff.

Yumi
Charlotte's getting used to being a flattie out in the world and her approach may seem bold.

Charlotte
If I'm at a beach resort or the beach or whatever, I just wear my bikini bottoms. I don't wear a top anymore and I'm more comfortable doing that than I am wearing a top over a flat chest. And there are more women who are willing to, again, take that risk and do that. I think the other thing is that we are turning the tide very slowly in the medical profession. There has been often a tendency for medicos to leapfrog over a conversation about a reconstructive choice and historically would have said things like, who would you like to be referred to for your reconstruction, rather than starting with, have you thought about reconstruction? Have you thought about going flat? Now, that said, there are women who will absolutely do better with a reconstruction because for them, their version of themselves, their version of the female form, their attachment to a silhouette, to having breasts, that that will be really well suited to a reconstructive process. So it's not a one size fits all and this certainly isn't, I'm not a crusader for going flat. I am an advocate for informed and empowered decision making in all cases.

Yumi
Charlotte is very frank about how her body has changed since her double mastectomy and choosing to stay flat and so is her husband, Rob.

Charlotte
My husband says, I love you, I love your body, I love your broken body. And people say to me, God, isn't that a bit weird? And I'm like, no, no, no, I love it. I love it. I love it because my body, it is a bit broken and I'm so cool with him loving my broken body. I don't want to hear that he loves my body because I don't really know if I can believe that. But when he says, oh, I love your broken body, I'm like, oh yeah, he really does.

Yumi
Like Charlotte, Aarthi, who opted to stay flat after a single mastectomy and became what's known in the community as a uni-boober, also has a cheerleader husband.

Aarthi
Yeah, he just said, I will always love you for you and you will always be beautiful to me no matter what.

Yumi
Aarthi's immediate family was 100% supportive of her decision, but she did feel some pressure to reconstruct.

Aarthi
I probably felt more pressure from just seeing the kind of different versions of quote unquote normal bodies just in the public and on social media. And also, I guess just growing up as a South Asian woman, you've sort of ingrained with a very fixed ideal of what the female form looks like.

Yumi
Is having one breast the new normal for you?

Aarthi
It is. It really is. And I really feel that it's been the best possible decision for me. Yeah. Because? It sounds weird, but I still enjoy having one breast. It's still enjoyable to have the sensation during intimacy. And it's also helpful for the times where I do want to wear a bra with a prosthesis. It just seems to somehow help keep things in place.

Yumi
Aarthi is thinking about getting some body art to commemorate what she's lived through.

Aarthi
I did come across some images online of women with single mastectomies who had beautiful, gorgeous tattoos on their scar side.

Yumi
What sort of tattoo? Do you have a vision?

Aarthi
Probably something to do with nature and flowers. I'm a gardener, and gardening is one of the things that kept me sane and kept me going throughout my treatment last year. Even when I was in the depths of chemo and hardly able to move from one end of the house to the other, I would still try and find a few minutes each day to just pull out some weeds or even just sit in the garden and just really kept me grounded and feeling like I could beat this.

Kate
I love my chest. I walk around in my garden topless.

Yumi
Like Aarthi, Kate also loves gardening, and post-mastectomy, she's been out with the secateurs.

Kate
A bee or a butterfly or something lands on my chest, and it's just this beautiful moment of clarity that I made the right decision. Topless gardening? Yeah. Oh, you've got to try it, even with breasts. It is just so liberating, and it's so nice at dusk, and I love being out

Yumi
there. Do you have mirrors in your house now, Kate?

Kate
Yeah, I actually installed wardrobes a couple of months ago with sliding mirrors, sliding mirrors on the doors, and I don't hate looking at my reflection anymore. My chest isn't perfect. It doesn't look the way that I thought it would look when I decided to have a mastectomy. What do you mean? There's just little bits of skin left over, because I didn't go with an aesthetic closure, which is where the plastic surgeons come in and they sort of make it look a bit pretty, but at the end of the day, I look at every single scar, every single little bit of skin left over, and I think to myself, you've fought a battle, Kate. This is the way that your body looks, and just embrace her and take care of her and nurture her and nourish her, because she's got you through all of this.

Yumi
We're all fighting some kind of battle. If not right now, then I'm afraid to say it, but probably sometime soon, my friends. The battle against breast cancer is one that affects 20,000 Australian ladies a year. If this is a battle you're fighting, we are sending extra big hugs from ladies we need to talk HQ. And listen, what you choose to do with your breasts, whether they're cancerous or not, is your choice. The expectations of real or phantom people are of no concern to you and I. Hot tip, our tits are none of anyone's business. Big thanks to all the women who shared their stories with us, including Dr. Charlotte Totman, who has her own podcast called Upfront About Breast Cancer, What You Don't Know Until You Do. And if you love what we do, please give us a rating or a review. It'll only take you a sec and it helps other people find the show. This podcast was produced on the lands of the Gundungurra, Gadigal and Mooneena peoples. Ladies We Need To Talk is mixed by Ann-Marie de Bettencor. This episode was produced by Elsa Silberstein with additional production from Sarah Mashman. Supervising producer is Tamar Cranswick and our executive producer is Alex Lollback. This series was created by Claudine Ryan.