This podcast contains the personal stories, opinions and experiences of its speakers, rather than those of Breast Cancer Now. Welcome to the

Breast Cancer Now podcast, providing support and information to anyone affected by breast cancer. I'm Laura Price and I'm the host of the Breast

Cancer Now podcast. I'm a food writer and author and I live with secondary breast cancer. Today we are talking to Toral Shah and Kreena Dhiman,

founders of the South Asian Supernovas, that aims to improve breast cancer awareness and outcomes for the South Asian community. Toral is the

nutritional scientist behind the Urban Kitchen, which teaches people to improve their physical, mental and social well-being in a variety of

ways. She's a trained chef with a very impressive amount of academic qualifications and she's had breast cancer not once, not twice, but three

times, with her first diagnosis at the age of 29. Kreena has also had breast cancer, having been diagnosed at 33, and she has a remarkable story that

has inspired a podcast as well as regular speaking, writing and media appearances. Kreena became infertile from cancer treatment and heart

failure and now has four children, including triplets, through surrogacy. This sparked the idea for the Intended Parents podcast, where

she and her co-hosts talk to different guests about unconventional routes to motherhood. Kreena and Toral, welcome to the Breast Cancer Now

podcast. Thank you for having us. Thank you for having us. Thank you. So I've given the very short version of who you are and what you do, but I'd love

you to introduce yourselves. So Toral, we'll start with you. So I'm Toral. I've had breast cancer three times, but actually my world was always going

to be about cancer. I knew at the age of 11 as a very precocious child that I wanted to work in cancer, because I read a book about a cancer

surgeon. And so for me, that meant going to medical school. And I was thinking I wanted to be an oncologist, but when I was at medical school, my

mother had breast cancer and I realised what the oncologist actually does, because when you are 16 and applying for university, you have

absolutely no idea. You have no idea what the jobs actually mean. So mum had breast cancer when I was at university and I remember thinking, so she's

having surgery, she's having chemotherapy, she's having radiotherapy, she's having hormone treatment. But what happens after that? What

happens when you've been through the treatment and you want to get your life back on track? Your mum has had a year of treatment and how to get your

life back. And that's when I really started looking to nutrition. And I realized at medical school, we learnt nothing about nutrition and kind of

really helping people's holistic well-being after this kind of cancer diagnosis. So I had a really difficult time deciding what to do. And I

actually ended up leaving medicine, which was, you know, if you're a South Asian person like me, that is literally the parents' worst nightmare,

although my parents are very cool about it. Worked in research for a while, had a bit of a break and then actually went back and did a master's in

nutritional medicine. And I was just about finishing the taught part of that course when I just felt a lump. And I was doing a lot of training. I was

training for a triathlon. And so I was very, very lean. So this lump was even more kind of pronounced. And I show my mum, she said, let's wait a cycle and

see what happens. And so I did. And then she said, let's go and see the doctor. My GP is a really close family at the time, was a very close family

friend. So he was like, wait till the new female GP starts next week. And so we waited, saw her. She and she sort of didn't take me seriously. So A being

29, despite my having a family history, my mum had already had breast cancer, my aunt already had breast cancer. But she was like, no, you're too

young. And so I just wasn't diagnosed for a few months, a couple of months, actually. And the only reason I got diagnosed because my mum works in the

NHS. And there's ways and means around the system. And so for me, that was really the first kind of experience of being discriminated against,

being really young and not being heard and listened to, despite having this ridiculously strong found history. So 29 years old, diagnosed with

breast cancer, it was a real shock. And actually, I was, I had very early stage, mostly DCIS, which is ductal carcinoma in situ just trapped in

your milk ducts a little bit of a kind of micro invasion to stage one. And so I had to have a mastectomy. And for me, being very, very body conscious, that

was literally the worst nightmare. So had the mastectomy was supposed to be in hospital for my 30th birthday, decided to leave. And luckily, they

let me leave because I was recovering quite well. And ended up just having hormone treatment. I didn't have any other treatment, because

medically, it wasn't necessary. And I was very involved in my treatment. So, off you go with your life. And I was already working, my master's thesis

was already on breast cancer and what you can do from a diet and lifestyle perspective to reduce the risk of reoccurrence. So my life was already

wrapped up in cancer, I was doing lots of work in this field. And, you know, continue to grow my business in that way. And you get to the five year mark,

and you think, okay, this is cool. past passed the five year mark, you get to the 10 year mark, and you think, great, I don't need to think about this

again. And so in the meantime, building my business, I have, I'm a nutritional scientist, an integrative oncology practitioner. I'm

doing loads of qualifications, I'm constantly training, helping, you know, breast cancer patients, other cancer patients all the time. And

then 12 and a half years in, my scar from my mastectomy started to feel weird. There's nothing else you can say other than it felt odd. And I think

that's where knowing your normal was so important. And so there became the process of trying to be, you know, diagnosed, but no, again, no one really

took me seriously. I kept saying this feels odd. And no one, again, no one really took me seriously, took me a couple months to get diagnosed again. I

have an amazing team at the Marsden so once I'm diagnosed, everything happens quickly. And, you know, it got to the point, well, what do we do?

Because this is a little stage one cancer, but in the skin of the mastectomy, because I never had radiotherapy, that's always a risk. If

you have a mastectomy, because a couple of cells are always left. So had the surgery. And then again, the conversation was, do we give you

radiotherapy or not? And they agonised over over three months, it took three MDTs later. And like, they're like, no, but we'll just give you

hormone treatment again. But I've never been able to tolerate Tamoxifen And that's a whole other conversation that we could have another time. And

so, you know, off we went, and that was end of that. And and then, you know, in the pandemic, I had a, and I was having regular PET scans, the pandemic just

before the pandemic in February 2020, had a PET scan that wasn't quite right. And they couldn't tell because I had some developed some sort of

dermatitis on the kind of my on the breast. And they're like, Oh, we don't know if it's dermatitis or breast cancer. I'm like, well, you might want to

figure it out. Anyway, pandemic happened, and the ball got dropped by everybody, not just the team, but myself too. So fast forward over that

kind of big summer where we're all kind of out and about. And like, I just started to get so much pain in my shoulder, my kind of around my neck area.

And I just thought this is not right. So called 17 times before someone really took notice of me. And then I just bypassed the kind of process and

went straight to my surgeon's secretary. And, you know, again, breast cancer, recurrence in the skin, but obviously a bit more extensive and

trying to grow into the muscle because I had previously had a mastectomy with implant reconstruction. And so we're going back into lockdown and

I'm going back into treatment. And that was really hard. So I had a DIEP flap, or had a mastectomy again, which is really weird because I've

already had a mastectomy, but kind of a mastectomy of the kind of implant reconstruction, and then a DIEP flap reconstruction, and then

radiotherapy and then hormone treatment, which again, I'm just poorly, I'm not able to tolerate Tamoxifen. And I haven't, I've actually given

that up. And that's a whole something I talk about quite a lot. But so I think the end story of this is you have to be vigilant. And I think there's a risk of

being hyper vigilant as somebody who's had cancer, not just once, twice, but three times. And so I have to constantly work with my nervous system to

calm that down. And luckily, I have lots of tools in my toolbox from the work I do with patients. But it's really hard because, you know, we know that,

and I think you know better, there is a 20 to 30% of primary breast cancer patients progress to, you know, having reoccurrence. And we don't even

know what the statistics are, whether it's, you know, secondary or whether it's actually a local recurrence, which is primary, like me or

what it is. So I think we just have to be as much as you think that, you know, five years, 10 years, you're out, you have to be a little bit aware, and you

have to be very aware of your own normal and be constantly checking. And that's not to scare people, but it's just to be with hormone driven

cancers, like mine, so I'm oestrogen positive breast cancer, they can return any time up to 30 years. And I think life events, and I could tell you a

little about the science, but I'm not going to in this particular episode, but why the things I think that kind of helped the cancer feel like you start

growing again. And, you know, we've got some great data for that now. But I think it's, you know, the moral of the story is like, just keep an eye and

know your body, because no one else, other people might be the experts in cancer, but you're the expert in your own body. You've raised so many

important points there, and so many familiar things. Kreena and I were both nodding our heads furiously throughout, because, you know, I was

diagnosed at 29 as well. And so many people listening to this podcast will have experienced a similar thing where their symptoms were initially

perhaps dismissed, or perhaps misdiagnosed. And the importance of knowing your own body and knowing when something is not normal or not right

is just so important. So thank you for talking about that. And loads of other points, which we'll come back on to in a bit. Kreena, why don't you

tell us a little bit about what you do, and also about your breast cancer diagnosis? Yeah, sure. So I guess up until last year, I was I was a corporate

accountant, you know, and my work in this space was always a bit of a side hustle. And over the years, over the eight years of working here, I've

realised that actually my passion is here. And I think part of life after cancer, we have a whole new perspective, don't we, on what we want to do and

what we want to leave behind on this earth. And for me, it was like, you know, an opportunity came last year to sort of quit that corporate rat race and to

really put my heart and soul into saving people's lives, ultimately, or enriching them. And so I made the jump and haven't really looked back.

Because of the work we're doing in this space and other projects. So obviously, we'll talk more about the South Asian supernovas that Toral

and I have co-founded. But then I'm also co-founder of The Intended Parent, which is a support platform now to help women, all couples or

single people going through surrogacy in the UK, because we know how sensationalised it is, how much sort of stigma and taboos associated with

that path to parenthood. And how tricky it is given sort of the legal implications of surrogacy in the UK, which is a whole other conversation.

So what I wanted to do along with my co host there is initially set up a free podcast, a free resource to smash the conversations that were on TV, you

know, about surrogacy is risky surrogacy is this surrogacy is that she's going to take your baby and you know, we have between myself and Fran, we

have six very beautiful healthy children. And we've not experienced the adversity you hear about in the press. So we wanted to put that out there

because for me, you know, a cancer diagnosis, yes, it happens. But what happens after that? And like Toral was saying her move away from medicine

into sort of her current work was because she wanted to help people beyond their cancer diagnosis. And I feel that same way, when it comes to

fertility and motherhood. And I think that so many of us feel that we're robbed of motherhood when we hit a cancer diagnosis. And I want to advocate

that you're not, because that's what I was once told. The line I often quote from my oncologist was that his job was to save my life, not to create a new

life. And that hit really hard as a South Asian girl who was newly married and always expected to have children. And so I moved heaven and earth to

have my kids. And I want other people to know that it's an option, and that hopefully we've made it a little bit easier for them. So The Intended

Parent is one of my babies. I then, yeah, you know, have other things that I do around sort of advocacy. So we mentioned that I'd gone into heart

failure following chemotherapy. That's something that I feel is still not talked about that much, cardiotoxic chemotherapy and the impact it

has on us. So I work with the International Society of Cardiooncology to raise awareness of, you know, what heart disease can look like after

chemotherapy and what we should be looking for. So that's another thing that I do. And then generally just sharing my story, podcasting, writing,

I'm in the process of getting a book sort of written and published. So that's also happening. And so it's all, you know, very exciting stuff. And

it stems from a cancer diagnosis at the age of 33. I had no idea that breast cancer happened in younger women. And this is despite sort of a familial

history of my maternal grandmother having experienced breast cancer twice when I was in my teens. But as a family, we never spoke about it. So we

knew that something was wrong with my gran, but we didn't know what. And the C word was never really mentioned. And she would go to radiotherapy on sort

of the hospital ambulance. No one would take her because she didn't want to pick people out. She didn't want people to sort of be a bit of a pity party for

her. And she didn't want to be a burden. Then I also think there was most likely an element of shame associated with it that just wasn't spoken

about. And I feel so sad for her now, because I think it must have been so lonely, a woman who didn't really speak English having to turn up at a

hospital where people probably didn't understand her, she must have been petrified. And she didn't have a loved one with her. Because she didn't

want to be a burden. And it's such a complex conversation in our community with our elders of we support them in so many ways, you know, we translate

their letters from the government from them, you know, we pay their utility bills for them, we do all of these daily admin things. But when it

comes to their health, there's a degree of secrecy when it comes to like chronic disease, because I don't know if they feel like they've let us

down, you know, we talk about this, Toral and I, a lot in the South Asian Supernovas that colonisation is really imprinted on our grandparents.

And, you know, they had to really struggle to fit in societally. They had to sort of endure so much adversity that they, I think felt the need to be

perfect, to be accepted. And I think that sort of filtered into our generation where you see all the doctors and accountants and you know,

highly academic people who are studying to then find acceptance. And therefore, we've been conditioned to not share our vulnerabilities. And

I think what I really want to do with South Asian Supernovas is to break that and to remind people that vulnerability is their greatest strength. So,

you know, that was the story for my grandmother. You know, we fast forward sort of a decade or so beyond her passing. And I find an inverted nipple. And

I joke with my husband about it and say, Oh, what have I worn? My bra must have been really badly fitting because my nipple's gone in. And I joke about it

for another week. And, you know, I think what on earth's going on here, not for a second thinking it could be breast cancer. And then two weeks later,

he's like, I think you should go to the doctor because that's not normal. And I sort of think once my husband says something like go to the doctor, I

take it a bit seriously because he never goes to the doc, you know, he would never suggest that or says, Oh, right. And I remember, say clearly, it was a

Sunday afternoon and I started googling what an inverted nipple is. And then there were the signs, you know, and symptoms coming up. I'd also had

shooting pain in my breast, but I was doing a lot of training. I was doing body pump. And, you know, I thought I've just lifted too much weight and

pulled a muscle. So let it be, then, you know, the sign was there when I look at it now, called the doctor on the Monday explained everything,

explained my fears, and then was told that they thought it was very unlikely that this was breast cancer. I initially went through to

receptionist, receptionist put me through to a doctor on duty, the on-call doctor. And I think when you're young and you haven't had an

illness, you don't really have a regular GP. So they don't know you as a person, they don't know what's normal for you. So she just said, Oh, right.

Yeah, no, you're very young, you know, from what I can see, you don't have any issues with sort of weight or, you know, I told her I was a non smoker non

drinker really. So she's like, your risk factors are very low. This isn't going to be breast cancer given your age and you don't have children, it's

most likely a blocked milk duct. Book the next routine appointment. So rather than getting in in the next few days, it was a week before I got in.

When I then got in the GP sort of felt my breast and you know, she gas lit me and she just said, There's nothing wrong with you, you know, and I can't feel a

lump, you know, this is nothing to be worried about. You've got a blocked milk duct, go away, you know, keep an eye on it over the coming weeks and

months and come back if it doesn't resolve. By that point, I've done a lot of research. And I think I'm quite a tenacious person, you know, and I was

like, hold on. Now I've done the research. I know that this isn't normal and I need to self advocate. So I basically sat in her chair while she sort of

told me that it was useless going to have a mammogram and there's no point referring me. And I was like, Well, I'll take the referral anyway, because

I'm entitled to it. And we had a lot back and forth then very begrudgingly, I got a referral pretty much because I refused to leave without one. And

then, you know, the motions start if you're getting called in to the specialist breast care unit and all of that. So I went in and I, you know, the

consultant first said to me, have you come on your own when I went to an appointment? And I said, Yes, because the GP said there's nothing wrong

with me. She was like, Well, you know, there's one, if not two, lumps in your breast combined with an inverted nipple, I've got real cause for concern.

I want to get you biopsied and mammogrammed immediately. So I was a bit like got in a state of shock because I just thought I was getting going to get the

all clear. And over the next few days, you know, everything just happened very quickly. I was mammogrammed and then called in for a biopsy and

ultrasound. When I went to the biopsy, the person who was carrying out that procedure hadn't read the registrar or consultant's note that they'd

only read the doctor's notes. So they were like, Oh, why are you here? And why have you brought someone with you? There's nothing wrong with you. And

I was like, No, the consultant has confirmed there's two lumps in my breast. She's like, No, no, no, the GP's report says there's nothing wrong

with your breast. And I was like, No, there is because I can actually now feel them. This is this is, you know, weeks on. She goes, Well, you don't

need anyone in the room. This is going to be a two minute job. Leave her outside. So we had an argument about whether my friend could come in or not.

And I got on the bed and just really angrily said, Well, just do the ultrasound. And I'm sure you'll call her in in a minute. And exactly, you

know, that happened within seconds of that machine going on my breast. They said, call her friend in, we're going to biopsy her. They then took

what felt like 10 to 12 samples, they did take a lot. There were two masses in my breast. And it was sort of August holiday time. And we were coming up to a

bank holiday. And once the procedure was done, I said to her, the consultant told me, you'd be able to give me an indication of what you might

have seen. And she just turned around, she goes, Yeah, it doesn't look good. And that, and that was it. That was it. And so my best friend was like,

she scooped me up, you know, I was in tears. And she said, let's go and let's go and get a hot chocolate and talk about this. And I think that was the point

at which I really knew that I had breast cancer. I didn't obviously know the extent of it. But she then my friend confirmed to me because she was like, I

saw the screen, you know, there's there's something there. So we can't, we can't sort of dress this up in anything other than there's something

serious to worry about. And as the weeks went by, you know, I was told it would be 10 days because there was some bank holidays. And that was on a

Friday, I got a call on the Monday to say, can you come in to see the consultant? So I knew by that point, you don't you don't get results one day

later, one working day later anyway, if it's nothing to worry about. And by Wednesday, we're in for to see the breast surgeon. And my husband and I went

in and he basically his words to me were, Kreena, you've got some naughties in your brea- in your breast. And I looked at him and I was like, are you

trying to say I've got breast cancer? And he goes, yes. And I said, I'd rather we just call it what it is. Because I'm not a five year old that you

need to say it's like a naughty or a boo boo or something like that. This is cancer. And we need to deal with it. We need to call it out for what it is. We

went into that appointment. I expected to hear that news. So I prepared for it. My husband, however, hadn't. He was very much burying his head in the

sand. And as soon as the words landed, he just cried. And I'd never seen him cry in my whole relationship up until that point. And I think that brought

with it so much hurt for me. I think I then started to feel responsible for other people's pain. And just a very complex journey thereon in with, you

know, the disease itself and then the repercussions of how that impacted my family and how I shared my family. I think what we have is very different.

Toral's family were very open and because of her mum's diagnosis, they spoke openly about it. Whereas, my family didn't really have any

knowledge of how to deal with it in that way. And so I became their protector and almost became apologetic for what was happening to me. And then I was

like, it's going to be okay. It's going to be okay convincing them when inside you're just crumbling. And it was really, it was really tricky. And

I didn't share my diagnosis news, really with anyone outside my immediate family and my bestest friends for a good two to three months until I'd

started chemotherapy. And it became impossible to hide what was going on. Kreena, you've just said so many shocking things that to me, a person who's

been part of this breast cancer community for 11 and a half years, I'm shocked by some of the things you just told me about the treatment that

you've had from medical professionals in this country. So I'm sorry that that happened to you. And I'm sorry that people of a young age are being

dismissed. I'm actually getting quite emotional just hearing both of your stories. There are so many things that resonated with me from what you

said. So I'm going to have to remember some of them. But one of the things that I wanted to go back to was you talking about how as a South Asian woman,

you're expected to have children and you felt shame around some of the things that happened in your diagnosis, some of the ways that you were

treated, the ways you came to talk or not talk about your breast cancer diagnosis with your community, which brings us all on to the South Asian

Supernovas. So tell me why you set up this organisation and what you're hoping to achieve with it, please. Kreena and I actually met in the

pandemic and this particular conversation about the outcomes of and the impact on the South Asian community has been part of my life. You know,

since the last 20 years, I was discriminated against and I didn't realize the extent of which until a few years later. And part of it was obviously the

age thing. But secondly, you know, being South Asian and I knew from the conversations I was having with other members in the community, extended

family that there's a lot of secrecy, a lot of shame. And then Kreena and I met online and we knew that we wanted to start something and talk about in

this space. But you know, as the pandemic happened, she had triplets. I had breast cancer again. Her mum died, my dad died. So it took us a little while

to kind of get ourselves together. But the main thing is we know that the outcomes like black women are much poorer and we know that there's layers

and nuances of our culture and our culture and condition that impact us very differently than the white population. So for example, when we talk

about the fertility and having children, as South Asian women we're expected to have children and for me, being child free is still a huge

source of hurt and pain. And part of that is not meeting someone, but part of it is the cancer diagnosis because if I get pregnant now, it's very

dangerous for me because of the oestrogen. And we know from Kreena's journey that people just don't talk about these things. The second thing

is the hair. Our hair is our crowning glory. And from the age of, you know, being very small, your hair's oiled, your head is massaged, they're

combing your hair, it's always about having long hair. I remember when I cut my hair at university, my dad, didn't talk to me for three days. You

know, these are the things even in liberal modern families, it is just part and parcel of your life. And then there's a whole thing about how breast

cancer impacts our health in different ways, or the impact of our health on breast cancer. For example, if you have type 2 diabetes, which is so hugely

prevalent in the South Asian community, six times more likely, you're approximately 20% more likely to have breast cancer. And doctors and

people do not talk about this. They don't talk about their metabolic health and how that impacts it. They don't talk about the kind of how your

cardiovascular health could be impacted by treatment. So, Kreena will tell you more about cardiotoxicity. But what we know is that we're more

likely to have cardiovascular health issues. And maybe by genetic screening, or by testing, we could find that out before you start

treatment. And then people don't have to go through what Kreena went through. And so we knew there was a space to try and change outcomes. And it

wasn't just from like providing a support space. This is about talking to healthcare organisations, doctors, healthcare professionals,

charities, to really look at kind of understanding, breaking down, unpicking the taboos, the myths, but also why we have these issues and why

breast cancer and we're being diagnosed so late. Why are we not attending routine screening? Why? Because people, the communications are out

there are not for our community. I'll let Kreena share a bit more. Yeah. So following on from that, I think that the hair is a big thing, like actually,

so I didn't cry the day I was diagnosed with breast cancer. I cried the day I had to have chemotherapy. I found out I had to have chemotherapy. My

original treatment plan was going to be radiotherapy. Then when they checked lymph nodes, they said we're going to have to switch to

chemotherapy at that, at that point, my world fell apart because I thought I'm going to lose the hair on my head. And I cold capped even on a bald head

just to preserve front fringing. So people could, I mean, in my head wouldn't know I was bald, but everyone knew I was bald. I never showed my mum

my bald head, not once through my entire diagnosis. I remember similarly at 16, I went from waist to bum length, waist, bum length hair, which I'd had

my entire life, to a bob because I was just feeling rebellious. And I was like, God, I'm so fed up with my mum telling me my, and she's like, your hair

is your beauty, your hair is your beauty. And no one will marry you if you've got short hair. marriageability marriage is a big thing we talk

about and the tick boxes of our lives. And again, I cut my hair to bob and she didn't talk to me for a week. And she told me I'd lost all my beauty and that no

one would marry me. And so then when I fast forward from 16 to 33, and now I'm going to lose every hair on my head, I couldn't show it to her. Because such

is the imprint of that conditioning. And it's really painful. So I think hair loss is traumatic for any of us. Hair loss in the South Asian community

seems to have another layer attached to it. And that's not something that's talked about. And one of the things when I remember, actually, you

know, we started talking online, but I'd been following her and her work for way before. And I was like, who can I work with to, you know, who can we,

who can we, who in this space is going to have the same passion? And I was watching everything she was doing and like approached her then to say,

look, let's do this. And we came together and I think you know, watching another woman talk openly about breast cancer was really empowering to me

and allowed me to then be more vulnerable and have these conversations. And one thing I used to speak up about was that I had my mastectomy without

reconstruction and went into a fitting for a prosthetic and was just told I had to wear a white woman's prosthetic because they didn't stock them in

black or brown skin tones. And now I'm like, hold on, I've never seen a white woman have to wear a black or brown

one so why are the brown women being asked to wear white ones? I was You know, that is, that's just horrendous. I went for a wig fitting and

I was given a blonde wig to try on. You know, you can see that I've got black hair and he said, we haven't got many black or dark South Asian style wigs.

So why don't you put this blonde one on? And if you like the style, we'll get a suitable colour match. And I was a bit like, I did it and I've got the photo of

me wearing it. And I'm a bit like, now I look back and I'm like, that's added trauma that a white woman doesn't have to go through. But I have to because

I'm a person of colour. And it's lymphoedema sleeves as well And lymphoedema sleeves. Yeah. So then that went into lymphoedema clinic

and they got lymphoedema and they put it on and they're like, this is, this is our nude one. And I'm like, nude for who? Because that's not a nude for me.

You know, and then the movement sort of came out on Instagram as well that nude is not one colour and, you know, petitions were launched and we need to

do more to have, you know, sleeves that match people's skin tone. Because again, you go out, you're wearing a short sleeve dress. It's triggering

when everyone asks you, what's wrong with your arm? Because it's so obvious that you're wearing a sleeve. The psychological impact of not

being seen and heard is, it's hard. And I, somebody who's been dealing with breast cancer for 17 years, it's still quite cliquey, the breast cancer

community. And it's still very white. And the charities have promoted that almost. So that's part of the problem as well, because we have not

addressed it. And you know, South Asians are the biggest ethnic minority in the UK. We make up between 7 to 10% of the population now. Yet we're very

invisible when it comes to media. We're not seen in, and if we're on a TV show, we're either a shopkeeper or a doctor. There's literally nothing

else. And it's really upsetting not to see yourself. I've been watching these American shows over the last couple of years, you know, Never Have I

Ever, like even Bridgerton and stuff. And seeing South Asian female protagonists, my life would have been so different if I'd seen that in my

teens and had that role model. And, you know, so now Kreena and I need to be the role models. Like, you know, when it comes to marriageability, like

that's such a big source of shame for me and difficulty. When I was being wheeled down to have my very first lumpectomy, wide local excision, it was

a South Asian anaesthetist who knew my family, knew my mother. And she said to me, Toral, don't worry, I won't tell anyone about your breast cancer. I

said, A, Hippocratic oath and you can't. And B, why? I'm telling people, there's nothing to be ashamed of and she goes But I know you want to get

married. I said, well, if they're not going to, I mean, they're going to find out. Breast cancer. So I don't have a breast, I have a reconstruction.

This is ridiculous. And so this is the conversation I'm having as I'm being wheeled down to theatre. And this is so it's not just external, it's

internal too. We have our own cultural conditioning and these things which are put on us. And I'm, you know, in our culture, if you're not married

by some point, if people introduce you, no one's ever introduced you. I fell off the shelf at 29. I literally fell off the shelf. And in some ways,

it's made my life beautiful and brilliant and no pressure. But it's also sad. It's so sad. And the impact of marriageability is huge. And, you know,

once I got married and then I got my diagnosis, I had a fear that my husband's family would tell him to leave me because I was damaged goods, because I

couldn't have children and because I was no longer beautiful. And, you know, one of the things I write about a lot, and we talk about it as a, you

know, culture and cultural conditioning, is that I think I spent my entire life up until the age of 28, 29, becoming marriageable. So studying so that

I had a high performing job, so that I was a good earner. I owned a big house, you know, I was fertile. I had long hair. I was pretty. All of these tick

boxes and then breast cancer comes along and all these tick boxes fall away. And what's left behind is almost a hollow shell because we've not

been taught to look inwards in any other way and to appreciate ourselves in any other way, other than the acceptance of our potential husband. And so

this is a huge issue, marriageability and the impact of those behaviors on someone once they have had a cancer diagnosis. And also the conversations

people have with people who've had a cancer diagnosis because then you had, I mean, when I was getting married, my parents had divorced and the

community was saying, oh, no one will marry Kreena because she comes from a divorced family. Or, you know, if you've had breast cancer before

marriage, one of my friends called me and his sister-in-law had been diagnosed with breast cancer and this is someone who knows I work in this

space. The words straight from his mouth were, well, we did let him marry her knowing that she'd had breast cancer. And I was like, wow, you know,

like this is in 2021. I'm having this conversation this many years after. I was like, why are people still being branded as damaged goods just because

they've had breast cancer? In fact, I think I'm a much higher quality good having had my breast cancer because I'm a better quality human being

because of the empathy and appreciation of life that runs through my veins. So we have to change that narrative within our community. And we

have to, acceptance is huge. Acceptance of the disease, acceptance of the lifestyle it then goes on to give way to, acceptance of children born in

different ways. Acceptance of a woman rocking a bald head, like, let's make it normal and let's make it be seen. And the other thing we have to talk

about is kind of our society as a whole. It's still very patriarchal, whatever culture, but particularly in our South Asian culture. So if you

do get a breast cancer diagnosis or any cancer diagnosis, you're kind of expected to carry on. And as Kreena touched on earlier, just like almost

look after everyone else. And as much as my family talked about breast cancer and they were there for me, I still had to do that. I still had to

manage people's emotional expectations within my family. But also in the way that you can't even ask for help in the way you expect it. And even this

time, my third diagnosis in the pandemic, I asked my extended family for help. But their whole way was, no, you have to accept the help that we want to

give. And that's very A, centering themselves and B, patriarchal. Because as a woman, I know what I need. I know what help I need, especially

because I've done this three times before. I know what I can do on my own and I know what help I need. So there's also that aspect of kind of the culture and

cultural conditioning that maybe other cultures don't have to, you know, and I know of so many cases where women having chemotherapy,

radiotherapy, surgery and expected to cooking for their husband's families and their in-laws and just look after kids and they're just

suffering. I'm hearing from you that there is work to be done both in the health care community, you know, in hospitals and in support centres that

are providing the sleeves and the wigs and the prosthetics. But there's also work to be done within the South Asian community in terms of educating

the family members and the friends of the breast cancer patient. Let's say a South Asian person is listening to this podcast, who has recently been

diagnosed with breast cancer like you both were a while ago. What advice would you give them? What would you say to them in terms of talking to their

family and friends and also talking to their health care providers? I think that that's such an interesting question. It's one that we're asked

all the time. And I think what I'd like to say is quite often there are real nuances within our community that we definitely need to iron out. But we

are also across all sort of parts of the South Asian community, a very loving community. So you only have to look when a baby's born and when

someone passes and when someone gets married, those are the biggest gatherings of people. And everyone turns up with love in those instances.

So we just need to learn to extend that level of love to disease and to therefore just talk about it so it becomes acceptable, normalise the

conversations. And I think, you know, maybe with raised tinted glasses on, but, you know, people will show up if they know what they need to show up

for. So advocate for yourself. And like Toral says, let people know what you need from them and make it clear where your boundary is. So actually,

no, I'm not going to be able to cook for you on, you know, my week one and two, because I'm going to feel like awful, awful. So we have these huge extended

families. So actually, that sister-in-law can cook on that day. That, you know, that that auntie can cook on that day. Line it up like I think planning

is really important and asking for help, because I wasn't very good at asking for help. We're not taught to ask for help because we're taught to be

perfect and small and academic and brilliant. And we're just not taught to be vulnerable and to know how to actually break our barriers down, but to

ask for help because we are supposed to be able to do it all. And we can't, we can't. And that's I mean, I'm still guilty of that to this day, you know, as a

mum of four now. And like just yesterday, I said, I've been at cardiology appointments all day and I was exhausted when I got home. And it's a bit

like, well, actually, do you know what? I just need to tell someone that I can't do anymore now because we just keep... And women, you know, not only

South Asian women, we keep taking it on, we keep taking it on. And then one point we'll hit breaking point and we need to stop before that and ask for

help. And I think this is the interesting and wonderful and brilliant thing about breast cancer is our self worth as women. And this is all over

the board, whatever culture is so much more what we're doing. Yet it really should be about who we're being. And when you have a diagnosis like breast

cancer, it does make you stop and look internally. And for me, it was the beginning of a huge journey of self development to where I really like want

to have integrity. And I'm constantly looking how it can be a better person each day. But that self worth, it's something that we're not taught. And I

think as all women, where a lot of our lives are still in the modern world about how we look, it does change things. Yeah. And how we prove ourselves

society. And so for us, it's quite often being an academic or being, having a vocational career and all of that. I mean, if I told my grandmother who

passed away like, I was going to leave accountancy to write a book, then, you know, they'd all be like, Oh my... even my mum was a little bit like, this

is a great side hustle, Kreena, but please don't let go of accountancy. You know, that's that's what we know will bring the money in. And that's

that stems from colonialism from scarcity, from poverty, where our parents have come from. And, you know, I feel like having had breast

cancer, we can use it in a very empowering way if we allow ourselves to. So for that patient who's just been diagnosed, one is just just put some

boundaries up and self advocate. And for the health care professional, it's, you know, yes, provide what they need practically. But also, I think

there needs to be real training on how to support mentally for minority communities, because it's so very different to the counselling you get.

I'm Gareth, the editor of Vita magazine. Vita is Breast Cancer Now's magazine for anyone affected by breast cancer. It's full of inspiring

real life stories, expert tips on coping with the effects of breast cancer and articles on health and wellbeing. In our new spring issue, you can read

about a mother and daughter who were both diagnosed with breast cancer 12 years apart. Find out the latest in breast cancer research. Get tips on

coping with fatigue. Read about the benefits of getting outdoors and much more. Subscribe to Vita now at breastcancernow.org/vita We've talked

quite a lot about what happens after you're diagnosed, how you talk to your community about it and how the health care professionals deal with it. But

diagnosis is also really difficult within the South Asian community, because there's shame and there's fear around going to the doctors in the

first place. Towards the end of 2023, you launched a brilliant campaign talking to women in your community about going to the doctors. Can you tell

us about that campaign? Yeah, so what we know from the statistics is that South Asian women are not likely, less likely to go to A, self-check, B,

have routine screening mammograms and C, kind of really be aware of the signs and symptoms of breast cancer. And that's where it starts, is

awareness. I mean, I also would love to go into the risk factors, but we're not going to talk about that today. But like, if you don't know the signs and

symptoms, how are you going to look for them? So when surveyed by Breast Cancer Now and other organisations, we're coming up poorly. So we set up

this campaign and we're using social media because that's the avenue we have available to us. But we're trying to use the younger generation of

South Asians to educate their older members of family, mothers, aunts, grandmas, but uncles, cousins, brothers, because men need to know too,

because men do get breast cancer, but also they often are the ones who might notice changes more, if in a relationship with someone. So our

campaign was using an amazing group of South Asian breast cancer patients, healthcare professionals, doctors and influencers in our

community to share about the signs and symptoms, remind people of the importance of self-checking and how to do this and also to attend routine

screening, because we're the group that actually attends the least. And so for example, like we had my mum was in the campaign, which is amazing. And

she had her first routine mammogram, which she went along with because she just was invited. And that's when they found her breast cancer. And

she had three tumours. And so she wouldn't have found that for ages if she hadn't had the routine... And she was younger. It was, you know, she was 49.

So I think that's why this campaign for us became really, really important because we have to start at the beginning. We have to create that awareness

and what to look for and, you know, how to do this. And then Kreena and I start thinking, well, how do we kind of get that message out there? And I'll let

her share more about that. Well, yeah, we want, we basically, you know, we, we know that it's an issue from the data, like Toral says. We also fully

acknowledge the diversity in the South Asian community. So what was important to us was that while Toral and I are both Gujurati girls and that

is the largest sort of minority within the South Asian community, there are so many other communities we need to be representative of. And that's

that's probably a nuance of being a South Asian. So, you know, it's eight different countries, multiple languages, multiple religions, so many

layers that we need to look at for this. So whereas some minority communities don't have to come against, you know, language being a

barrier, that is for us, religion being a barrier, that is for us. And then conditioning being a barrier, that is for us. So we wanted to do something

that made it as accessible as possible. So we, we curated our cast knowing that. So we made sure we had Jains in the, in set. We made sure we had Hindus.

We had Sikhs. We had Muslim people. We had a diverse range of ethnicities within there. So we wanted to make sure that as many people who saw the

campaign could resonate with someone within the campaign. And what we also know is the power of the family WhatsApp group in our community. So my

mother-in-law is forever showing me media on her phone that says, eat this and your toothache will go drink this and your bellyache will go. But some

of it really is just nonsense. And so we thought, well, let's use that to actually rather than tell, we initially started it off by telling Auntie

G, who is the one who forwards all of these messages, what she's doing wrong. And we thought, actually, no, let's not crush her. Let's empower

her. So what we'll do is give her a message that will help her tell other people what to look for when it comes to breast cancer. So she became the

focus of our campaign, the Auntie G, who we all know and love, who sometimes is a bit inappropriate with her messaging. And maybe forwards

misinformation. We wanted to give her the right information. So everything was created around Dear Auntie G, do you know the signs and

symptoms of breast cancer? The content was created so that, yes, it sits on social media that our peers will see, but it will get onto the family

WhatsApp group that all the elders will see, because that's the media that they're digesting. And I think it's important that we think about what

media is the demographic we want to access actually looking at and watching. You know, they're not watching Instagram because they don't

have Instagram accounts. They're not watching BBC News or This Morning or Lorraine because they don't speak English. So what are the channels? What

are the radio stations and what are the avenues that they take the information from? So we launched the campaign. It's been massively

successful. And, you know, it's out there doing its thing. And I think we're both super proud of how far it's gone and what we've achieved with it

in a really short time. I'm so proud of us because the concept to output happened in less than two months. And, you know, for anyone who works with

you, you know, something like that is insane. Kreea and I are severely sleep-deprived, but I'm so proud of this. It's absolutely, absolutely

brilliant. It's such a brilliant, powerful campaign, you know, seeing it as a white woman, not part of your community at all, but just, you know, it

completely captured me. And I can see how it's really, really going to reach, you know, so many people in such a brilliant way. Ultimately, the

aim is then to sort of get the stories out of everyone who's in the campaign, get the messaging out. But we also now have the second wave, which we're

recording, which is sort of multilingual self-checks and things like that, that then land on people's phones. So, so, so that it's as accessible

as it can be. Fantastic. You've both been through so much. And I actually just wanted to ask the question to each of you. How are you? You know, it's a

really good question. I think like other cancer patients, for me, you know, things are up and down. Like, I've just had my six-monthly PET scan

and I'm waiting with scanxiety, like other people, to see what's happening. I have some active lymph nodes which have been there for, I

don't know, four or five years. And it's a watch and wait situation. But otherwise, well, I just feel so grateful, I have Kreena, because I can talk

to her about things I don't talk to about... Not that I don't have other breast cancer friends I do, but in a way that understands kind of all the

nuances of my life. And we've become like sisters and we fight. Don't get me wrong. Yeah, one of us is always pissed off with the other. That's me

probably more than Kreena. But I do think that having someone that you can really talk to about kind of all the intricacies, makes such a difference,

especially because for me, I don't have a partner. And yeah, my family, my dad just died. You know, my brother lives in Hong Kong. It's hard. And so for

me, having like this sisterhood is so important. Yeah. I think it's great for anyone diagnosed with breast cancer to have a friend or a person who has

breast cancer as well or has had it, who has experienced it and who gets it. Just as that support network. And also, you just like, you know, I've had so

many friends. And sadly, so many of my friends have passed away. And for me, I feel like I'm constantly in heartbreak. And so having someone, you know,

literally, I don't think Kreena's four children will let her go anywhere. So she's stuck with me too. And how are you, Kreena? And how are your kids?

Yeah, I mean, it's tricky. I feel like I'm constantly up and down. And I'm, you know, I think it's exhausting. And like one of the things Toral and I

talk about is that actually this work is exhausting as well. And it's it's quite triggering and it brings our trauma back to the surface. And if I'm

honest, I don't think we're held enough and we're expected to do more. So, you know, it just things like the campaign, you know, we've run that from

scratch because we have no funding, we have no sponsor, you know, we have had one sponsor and say therefore we're burnt out delivering it. But the

messaging is important. So we really need we need investment if I'm honest to help alleviate the burden on us. But then otherwise, you know, like we

didn't talk too much about my heart failure. But the one thing that really scares me is this is the impact of my heart because it's a lifelong

condition now. And I really want people to know that if if they struggle with breathing and stuff after chemo to get it checked, because I don't

want people to be as severe as me. I was, you know, fatal with my heart failure. And so yesterday I spent the whole day in cardiology and, you

know, with this fear about my heart regressing and then comes a fear of potentially leaving my children. And I was talking to my friend Emma, who I

found crossing the road at the Marsden when I was leaving the Brompton. And I was like, you know, sometimes I feel guilty, like I can't talk about how

I'm scared of dying because I don't have secondary breast cancer. But actually, I have a cardiac condition that that is as fatal. And that

conversation isn't had enough. And so it's very difficult. Like Toral, you know, I lost my mum less than two years ago. I lost my dad less than two

months ago. I lost my friend Nicky last month. And it's been really, really emotional. So I'm not sure how I am, if I'm honest, because then I've got

four children to look after. And you can ask any mother like that's exhausting. And the work's tiring. But, you know, we do it because saving

lives is so important to us. And so I'm not going to say I'm brilliant because I'm not sure I am. But I think it's OK for us to also sit here and admit

that as well, because that's super important. And sometimes it's nice because like Toral says, I have her. And yesterday I left her with this

ranting voicemail about, you know, blah, blah, blah. My husband's done this and my sister's done, you know, just someone to offload on. Because

actually the people that we spend 24 7 with don't... sometimes they really just don't get it. And, you know, whilst my husband's walked the cancer

path with me, he won't understand the emotional impact and, you know, the lasting imprint that it has on my life as well as someone who's been through

breast cancer. But also there's a massive, you know, as with my husband, there's a massive impact on them as well. And so you talked at the beginning

of the podcast about how you sometimes as a cancer patient feel like a burden on others, which is something that I've massively felt. And so I try

to minimize the stuff that I put on my closest loved ones. I try and put that stuff on people, on other people instead, because I don't want to add more

pain and fear to what I'm sure they are already feeling, you know. And there's a level of I think a part of me wants a level of detachment in my home.

So it's nicer for me to talk about cancer with people who don't live in my same four walls, because I kind of want those four walls to be a bit more

sacred. And therefore I don't I'm not as open with it. So I find it very awkward as well to talk about breast cancer. And, you know, it's it's it's

very complex, but I don't talk to my sister or my sister in law or my cousins about my breast cancer diagnosis. I talk to my community about it because I

feel held there. And that's partly why we're here with the Breast Cancer Now podcast, you know, because so, you know, everyone probably in this

community feels like that to some degree. And so to have a place where people can come to just listen and feel like there's a friend on the other

side of the earpiece. And, you know, I think that's such a big thing. When I was first diagnosed back in 2006, pre-social media, the one thing that

really helped me was Breast Cancer Now. They had a kind of a matching kind of a service where you could talk to someone on the telephone, like a

telephone penpal. And whilst I never met her, I have no idea what she looks like. You know, you weren't allowed to share kind of details apart from

your cancer details. That helped me because I didn't know any other young people with breast cancer. There was no one in the hospital that was anyone

like me. And the other day I was in, you know, waiting for my scan. There was a younger woman who was South Asian, like the only woman of colour. And I was a

bit like, oh my God, should I go talk to her? Like, yeah, then I did it because I just thought, like a twit. But like, it was ridiculous that that, you

know, we're still as younger women, the three of us are sitting here all diagnosed before the age of 35, it's still rare, you know, only 4% breast

cancer is diagnosed to people under 40. And we're sitting in, we're still always the youngest people there. And people are, why are we there? And I

think having that community is even more important for us, where our natural life doesn't mean that we're meeting other people with breast

cancer, if that makes sense. Yeah. And similarly, when I was diagnosed, because, you know, Instagram wasn't as big back then and I wasn't on it for

sure. But what I did join through Facebook, I'd found Younger Women With Breast Cancer, two day workshop. And I went to that. Oh my God, you know,

that was 10 years ago and we're still friends. You know, we were set up, we called ourselves on Facebook a little group called the Bionic Beauties

and we would meet up, you know, once a year and just talk on Facebook about things that we couldn't talk about with other people. And so facilitating

those relationships, like, you know, we're still friends and we've lost some of our group and we've mourned them together and then we've

celebrated milestones. So, you know, this year is 10 years for me. It's 10 years for my entire group, you know, of us who are still standing. And so

every month we're all congratulating each other and now the posts are coming on, oh, it's my last Tamoxifen today and it's my last this today and

it's just lovely that that connection. We're not, yeah, we don't talk every day, but we're connected and I think we will be forever more. If any of

our listeners are, you know, wanting to find that person, then Breast Cancer Now actually still has a similar service called Someone Like Me. So

if you just go online and search for Breast Cancer Now, Someone Like Me, or go on the Breast Cancer Now website, you can find that service. So there's

one question that we're asking all of our guests on this podcast, which is what is the one thing that you think needs to change in breast cancer? So we

need to collect more data and we need more research, both in primary and secondary breast cancer, but particularly including marginalized

groups, including people of colour and different ethnicities, but also other marginalised groups too. Thank you. For me, I think it's

representation, representation in media, representation in campaigns, representation in clinical trials, representation in sort

of the oncology space overall. Absolutely. Thank you. So where can people find South Asian Supernovas? And also if people can get involved, how do

they get involved? So we're on all the major social media platforms under the handle @SouthAsianSupernovas So, you know, we are Instagram,

TikTok, we've got a Facebook group, and that particular Facebook group is really useful because we put all sorts of opportunities in there,

including patient groups and other conversations, and we do have a website too, so check us out. And where can people find you personally? I'm

mainly on Instagram, just @kreenadhiman or online at my website at www.kreenadhiman.com I'm on Instagram and Facebook @theurbankitchen

which is the name of my consultancy, and the website www.theurbancitchen.co.uk And if you're a primary breast cancer

patient, I have an integrative breast cancer course which can help you reduce your risk and support you through the cancer journey and beyond.

And we have put all of those links in the show notes, so people do not need to be furiously writing it down. Kreena and Toral, thank you so much for

joining us. This has been so enlightening, and I feel like I could have spoken to you for hours, and hopefully we will go on talking after the

podcast, but thank you so much. Thank you for having us. Before we actually go, can we just say a massive thank you to Breast Cancer Now for all of the

help with the campaign because I'm not sure we could have brought it to life without all of the support of the team there, so thank you very much. And in

so many ways, from marketing through to multimedia through to everything, literally press releases, they've held our hands, and I

think having that support has actually helped us to make it a reality. It is a fantastic campaign, so congratulations, and I look forward to seeing

where it goes in the next couple of years as well. Thank you. Thank you. If you enjoyed this episode of the Breast Cancer Now podcast, make sure to

subscribe on Apple Podcasts, Spotify, or wherever you get your podcasts. Please also leave us a rating or review on Apple Podcasts and perhaps

recommend it to someone you think would find it helpful. The more people we can reach, the more we can get Breast Cancer Now's vital resources to those

who need them. You can find support and information on our website, breastcancernow.org, and you can follow Breast Cancer Now on social

media at Breast Cancer Now. All the links mentioned in this episode are listed in the show notes in your podcast app. Thank you for listening to the

Breast Cancer Now podcast.