September 24, 2025 • 39 mins
Amy and Naren hear three perspectives on how ethnicity can affect breast cancer diagnosis and the need for greater community awareness, cultural sensitivity, and equitable care for all.
Journalist Satnam Rana-Grindley caught her breast cancer at a very early stage, but says cancer is a taboo subject for many in South Asian communities. Meanwhile, consultant medical oncologist, Dr Olubokola Ayodele, says black women are "four times likely to die from the disease" due to late presentation and aggressive subtypes like triple-negative cancer. She highlights systemic bias and the need for inclusive screening programmes.
Helena Boyce runs Youbuntu, which delivers workshops on diversity and inclusion. She talks to Amy and Naren about her three cancer diagnoses and the discrimination she faced within the health system as a black woman, including being offered a "pink prosthesis" after a mastectomy.
01:09 Introduction to Satnam Rana-Grindley
01:31 The importance of self-examination
04:51 Cultural taboos and family reactions
06:39 Improving breast cancer awareness in South Asian communities
10:22 Health disparities in black and minority ethnic communities
21:19 Challenges in clinical trials and treatment acceptance
28:43 Helena Boyce on her multiple cancer diagnoses
32:47 Helena Boyce on discrimination and advocacy
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Today we're talking about ethnicity, race and breast
cancer. Because the truth is, breast
cancer does not affect everyone equally.
Hello, I'm Amy Dowden. I'm one of the professional
dancers on Strictly Come Dancing.
(00:20):
Two years ago, I was unfortunately diagnosed with
breast cancer and after a mastectomy, chemotherapy.
I'm very proud now to be on the other side and super grateful to
be there. But now I'm on a mission to do
all I possibly can to raise awareness, break the stigma, and
to learn as much as I possibly can about this awful disease.
(00:43):
Hi, I'm Naran to one of the breast surgeons in Birmingham.
I've been looking after individuals who've been touched
by breast cancer for almost 2 decades and it's a real
privilege to be part of your journey and these collaborative
efforts to try and improve awareness about breast cancer.
(01:03):
Welcome to Breast Cancer Uncovered.
Let's talk now with journalist Satnam Rana Grindley.
We are joined by Satnam, an ex journalist who herself had
breast cancer eight years ago. Hello.
Hi Amy, really good to be here. Thanks for having me.
(01:25):
Tell us a little bit about your diagnosis, if that's OK.
OK, so I'll take you back to 2017.
It was pretty much mid August and I was in the shower, just a
regular get up, getting ready togo to work at BBC in Birmingham.
And I'm a bit of a self checker so I sort of have a mental note
(01:45):
of a week or so after my period finishes, have a bit of a feel
of your boobs, see if anything'schanged etcetera.
And it had changed. What I noticed was a very small
lump. And I pretty much shrieked out
and, you know, called my husbandand said have a feel of this,
this doesn't mean there, what's this, this is freaking me out.
And within the hour I was on thephone to my GP and I'd booked
(02:08):
myself in to to see the GP in in2 days time.
And I don't know, there was something that morning which
made me panic and made me act with speed I suppose.
And lo and behold, a week later I was in for my biopsy and had
(02:28):
unofficially confirmed that it was probably cancerous, but
that's just because I'm a pushy journalist and asked all the
right questions as I was going through the procedures.
And then it was confirmed at thebeginning of September, just a
few weeks later, that indeed I had invasive breast cancer.
So I found the one tumour it haspresented itself and
unfortunately there was a secondtumour as well.
(02:48):
And then I had a formastectomy and a reconstruction at the same
time. Thankfully I'd caught it early
enough to not have to go throughchemo or radio, but again I got
lucky because I was one of two patients in Worcestershire who
were funded by the NHS at that point to have a non Co type DX
(03:11):
test done. It's now on the NHS.
But that really did give me the indication of sort of likelihood
of reoccurrence, although I knowit's not about that, but
psychologically about that, but also whether there was a need
for chemotherapy or not. I had the ONCO test as well and
that when that came back, that determined for me that I needed
(03:33):
chemotherapy. But what exactly is it?
So the test you're talking aboutis a commercial test, so there's
three or four similar type tests, but what it does is it
takes part of the tumour that has been removed and it sends it
to a lab and does some further testing.
(03:55):
It is an example of bespoke medicine.
So that tumour type is analysed at a very, very in depth genetic
level to see actually if we wereto give this individual
chemotherapy, what would the benefits be?
(04:15):
Yeah. For me, I didn't want
chemotherapy and it was, I was obviously recommended it,
strongly recommended it and I didn't want it.
And last one, they said let's dothe uncle type then.
And then yes, when that came back high, then it was OK, I
have no choice because the science is there, the results
(04:36):
there. So I guess then it yeah, like
you said, it made it easier thento go, well, yeah, I have to
just get on with this and do it.And so, yeah, from my personal
experience, yes, it did help me.So in the South Asian community,
is cancer still a taboo subject?Yes, is what I would say overall
(05:00):
it is. I think I have seen improvements
over the last decade or so, but certainly when I was diagnosed
look, cancer equals death for most people.
I think as soon as you hear cancer, cancer, you think, Oh my
gosh, I'm going to die. And so, you know, for someone
like me, if somebody had died from cancer when we were young,
(05:23):
it was a bit hushed. It's in fact, I've just, I've
just travelled back from India, having met my, my extended
family in India. And somebody asked me, oh, you
know that problem you had several years ago when I said,
you mean my breast cancer? So it's a yes, it is to be.
You know, just saying the word out loud is to be.
How did your family react when you told them about your
diagnosis? I was thinking of what do you
(05:44):
think? I feel as if Mum, I should raise
some awareness and going to haveto go through this regardless.
Let's try and get some good out of this.
My mum's a nurse or is a retirednurse, so that helped.
And she says she sort of said, well, if you think you can help
other people, then yes, you should absolutely do that.
So I had them on side. I did have the one side.
(06:06):
They still found it difficult touse the word cancer.
There were other words used amongst the community, but it
almost forced them to face it and to talk about it openly with
their community as well and their community of friends.
So I was doing my thing professionally and personally,
but they also were being forced to talk about it when they were
(06:28):
in the Goodwara, their place of worship, or in their, you know,
over dinner with with their friends.
And so I guess in my own way, I was trying to erode that taboo
as well at the same time. Are there opportunities to
improve access to screening or recognition that breast
screening is, is important, I guess, in the South Asian
population? Absolutely.
(06:50):
I, I think actually it starts even before screening because I
was a self checker. So I know that because I can
speak Punjabi. So if there were any aunties I
was coming across, I was like check yourselves please.
That's the, that's the biggest thing.
You know that I, I picked up thephone to all my girlfriends and
said, do you check yourselves? Because I, I do and I have and
this has happened. Please check yourselves and,
(07:10):
and, and it was the same for sort of the aunties and asking
mum is he tell one person what the other person tells another
person. So I think in terms of breast
screening, So when you do hit you're 50 age and with with a
South Asian diaspora, there is more work to be done to raise
awareness. Because what I found was a lot
of women saying, oh, the appointments come through, but I
haven't been to the appointment.I've just ignored it.
(07:33):
There's not an open dialogue within communities, so I just
found my own avenues and ways ofcommunicating that.
So one was through obviously personal circles.
Secondly, using the BBC as a platform to communicate to a
wider audience and then leveraging places like the BBC
Asian Network to to speak directly to a South Asian
(07:54):
audience. I happened to be also diagnosed
around the time of breast breastCancer awareness Month.
So I did a few community based events and I think one of the
biggest ones I did, which was post treatment was actually at a
good Wara in Smethwick and they held a health awareness day and
it was around cancer and breast cancer.
(08:16):
And I think out of everything I did that was one of the most
impactful things. So I recall going to and I was
invited along to it to want it to Smethit Gutwara in the Black
Country. It was really, really important
event because it pulled upon thecongregation and the wider
community to come and interact with medics, but then also
people like me who had been through breast cancer.
(08:37):
But the biggest message I left them with with was check your
breasts, get to know them. If you notice the difference, do
not wait, Pick up the phone to your GP.
It's better to present early than not to present at all or to
present too late. So that was one message and the
second one was I can see there are a lot of aunties in this
(09:00):
audience. You will have an invite from the
NHS to go to your regular breastscreening.
We're privileged to have access to this service, please use it.
And every time I have the privilege of speaking to a wide
audience like that, those are the 2 clear messages I try and
leave them with. And you know, if you can, if I
(09:20):
think even if you've made a difference with one person, they
will go and hopefully speak to afriend, a member of the family.
And so the concentric circle of communications and health
awareness spreads. And and that's sort of how how I
look at it even eight years on. Yeah, amazing.
Thank you so much. And thank you for raising
awareness and yeah, turning a negative into a positive and
(09:44):
trying to help others. That's exactly what you've done
though, Amy as well. And I think you know anybody who
can who can do that to make a difference.
Then then in some ways it's almost rationalizing why you
went through it in the first place.
Yeah, absolutely. Thank you so much, Aaron.
(10:07):
You've been speaking to a woman who's doing some important work
around health disparities and breast cancer outcomes in
minority communities. My name is Doctor Lubu Kaliade,
I'm a consultant medical oncologist and the breast
(10:29):
oncology tumulated at the University Hospital of Leicester
NHS Trust. Now, this is a subject that's
very close to your heart. What do you see is the current
trends, the current data of people from ethnic backgrounds
and breast cancer? So we do see a stock difference
(10:53):
in outcomes of patients. And when I say outcome, I mean
survival outcomes. There's a higher number of white
people who are affected with breast cancer.
However, when we look at the mortality, we see that it
doesn't correlate the more people from ethnic minorities
dying from breast cancer compared to their white
(11:16):
counterparts because most of thetime they present late.
So if we look at the data, we see that over 70% of black women
that present were present in stage 3 to 4, which are the
latest stages of breast cancer compared to white women.
(11:38):
And as we do know with breast cancer, the earlier you present
then the better your outcomes. So that also contributes to the
poorer outcomes we see in ethnicminorities, especially black
communities. As a black woman umm in the UK
if you do get breast cancer you're 4 times likely to die
(12:01):
from the disease then from if you're a white person and most
of the reason is because of the late presentation.
Also there's the aggressive typeof the cancer itself.
So black women who tend to have an aggressive subtype of breast
cancer called triple negative breast cancer, which usually has
(12:24):
less treatment options as well. So that also factors into some
of the reason for that stock difference in mortality.
And I guess what what you're saying is that there's a higher
proportion of triple negative breast cancers in black women,
(12:45):
Is that right? Yes, about 40%.
About 40% and in terms of triplenegative breast cancers in in
black women, I guess is that something that we see just in
the UK or is that the sort of trends that we get outside the
UKI guess in in Africa and and other parts?
(13:07):
So it's the trend. So this has to do with the
ethnicity that we're talking about.
So it's all it's usually black women, most most especially
people from West African descenttend to have more triple
negative breast cancer. OK.
Why do you think amongst the black women community there is
(13:32):
this later presentation? Is that something from a
cultural perspective from the women, or is there some sort of
bias within our system that actually is contributing to
that, or or both? There is that culture of it.
(13:52):
And so we do know that cancer isa taboo word in a lot of ethnic
minorities. People don't talk about cancer
because of the fear, because of the stigma that comes with it.
Also, people feel like if they talk about it, they would get
it. So they prefer not to say
anything. But also there is that
(14:13):
socioeconomic determinant of health as well, where a lot of
people in the black community are usually deprived.
So they tend not to focus much on health.
Health is a list on their priorities.
So they would focus on trying tomake ends meet, have a roof over
their head. So when it comes to going for
(14:37):
things like screening or trying to focus on their health, they
tend to play it back, you know, So that's that bit.
So but also there is systemic bias.
So let me put that into context.So currently the screening, the
breast screening service available in the UK is for women
aged 50 to 71. And unfortunately breast cancer
(15:02):
in black women present 21 years earlier than white women on the
average, which means that the system already is biased against
black women because that screening has not been designed
for them. So we tell them to go for
screening, but then screening isonly for people 50.
(15:25):
So already those women already having cancers in that younger
age. So there's no way to catch it
early. So a lot of the reforms or the
lot of interventions that I do is more about awareness and
education and self examination. Because currently that's the
(15:45):
only way I can help women present early because the system
would not help them because of how rigged the whole thing is
about the timing of the people that come for breast screening.
We need to look at the demographics of the people that
(16:06):
are now in the UK. One in four women in the UK
would come from an ethnic minority right now, based on the
2022 census, which means that our system needs to reflect
that. How would one consider screening
younger black women? I guess it's it's going to be
(16:29):
quite challenging if we're goingto have limited opportunities to
improve screening imminently. What about educating women about
when to seek help if they have breast symptoms?
A lot of the work I do is education because we've seen
that a lot of people don't even know what to look out for.
(16:52):
You meet a patient with a fungating breast cancer.
What fungating minutes is that is a cancer that's already all
straight in and bleeding and they've been sitting on it.
Or they come and say, oh, but I felt this lump about two years
ago. I didn't know it meant anything.
But it's also not knowing that there are some other symptoms
(17:13):
that might present in a black person that doesn't present in a
white person. And this is what I'm talking
about, representation. So there was a survey done by
Black women rising I think in 2022, um, that showed that 48%
of GPS did not know how to recognize breast cancer in black
(17:36):
women because the tones in the textbook, everything looked
different, you know, so they would come and then they would
be sent by the GP to say, no, this is not breast cancer.
Also, the age demographics didn't fit the picture because
they were coming earlier. And as you do know, we know that
not all lumps are malignant or are cancerous.
(17:58):
And when, when you see your patients in your in your clinic,
do you tend to observe any differences in accepting
treatments as a as a cultural orany differences between races or
do you think that it's quite evenly distributed?
(18:19):
It's not so there is a big difference.
So fate is a big thing in the black community and I think in
most, in some some ethnic minorities as well, because I've
seen something similar with South Asian community.
They the, the fate is a big thing, whether they're
Christians of Muslim. So if you say that you're going
(18:41):
to offer something to them, thenit's challenging because it kind
of refrain from it and they're resistant to it.
You will get there. And which is the reason why I
think there's a need for cultural training in, in, in,
in, in the NHS to understand that some people need a little
(19:03):
bit more than the others before they get there.
In, you know, for a white person, you'll sit down and tell
them that this is the plan, you know, and they're open and
they're like, when can I start? For a black person, due to the
culture and the beliefs and concerning, you know, the
treatment and cancer itself, it becomes a little bit more
(19:25):
challenging to get them to accept it first because
acceptance is, is, is, is a mindset as well.
People have thought that cancer is synonymous to death.
So they wonder, why do I need toget this treatment if I'm going
to die anyway? Or because they come presenting
late, they tend to have a more complex or more aggressive
(19:47):
treatment pattern, which is whata lot of people see out there.
So they'll tell you, oh, I saw my auntie go through
chemotherapy. She was so sick.
She, I don't want to accept thispoison.
And that's why you need to take your time with this group of
people and just make sure that you explain in the right way and
what to do. And eventually a lot of them do
(20:09):
understand, but it takes a little bit longer.
Also, coming in with someone else is very powerful.
I try to. To make sure that patients don't
come by themselves. People come in so much fear.
There's so much uncertainty about what's going to happen.
They'll traumatize basically, you know, and they don't hear
(20:32):
what you're saying. But when you come with someone,
that person is there to help us.A second pair of ears, you know,
they're noting things down for you.
I've also asked that you can, you know, ask your oncologist
very politely if you could record the conversation because
then you can go back and listen and use it for reference as to
(20:54):
what has been said. And that can also trigger for
the questions that you can direct either to your oncology
team or to your clinical nurse specialist.
OK, thanks. And so let's talk about a
scenario where you're in your clinic and you're seeing a black
woman diagnosed with breast cancer.
(21:17):
And are there any current challenges barriers of accessing
or offering or even black women accepting clinical trials in
your have you that that you've observed?
So I think it's no longer news Narin that clinical trials are
not representative. There's no diversity.
(21:39):
A lot of the drugs and medications we have today to
treat cancer was mainly trialledin white people and that itself
is a problem. We know that there's a need to
involve other ethnicity because of the pharmacogenetics that's
(22:01):
involved. We need to know how this drug is
broken down, how it works, the side effects potentially if we
need to switch doses for, for, for, for other ethnicities.
In terms of the clinical trials,it's always been quite difficult
to get Black people on it, and Idon't blame them.
(22:21):
That's that historical mistrust where black people have been
used for the wrong things. So that in itself make them a
little a bit nervous about doingthat. 2 is that it takes more
time to talk about clinical trials, the inclusion, the
exclusion criterias. So there's a bit where people
(22:42):
think clinical trials is the last resort.
So they don't think that it's something that would be offered
to them at the beginning, you know, which is something that
we're trying to change that that's a myth.
Clinical trials can be the firstthing that can be offered to
you. It doesn't have to be the last
resort. Also the logistics, you know,
(23:03):
clinical trials involves you come in more into into clinics
or into hospitals because as women are really diagnosed at a
younger age, they have more logistical problems in terms of
getting child minders or childcare or living having to
take time off work because a lotof them are either kind of newer
(23:28):
to the country so they don't getbenefits.
So all of this kind of play a role in the decision of being
involved. We need to structure and tailor
this to fit this ethnicity and not A1 size fiddle approach,
which is always what we've always done.
(23:49):
I guess the question is, what can one do in the community?
How can we instill awareness specifically for Black women in
the community rather than amongst the healthcare
professionals? Are there any thoughts you had
on that? For me, I think that's one of
the most important thing becausethat's what's going to change
(24:14):
that one, late presentation and two, prevention, because
prevention and early diagnosis are the things that are going to
change mortality for this group of women.
OK. And it's very important to go
into this grassroot, and that's what I do.
(24:34):
So you go in, you're looking forchampions, you're looking for
people, trusted people in the community that they would listen
to because that's one of the cultural nuances that we have.
We tend to listen. Leadership is a big deal for us.
We tend to listen to people thatmatters.
So which is that's why I always say, you know, faith-based
(24:58):
churches, the leaders of faith-based churches, the
community heads, the people in the schools, these are very
important people to get on board.
Then they know that it's important for their, you know,
leader to buy in into it and they tend to listen more.
(25:19):
So if, if you were faced with a newly diagnosed, a black lady
with breast cancer, what, what are the, the real positive
aspects in modern day breast treatment that, that they can
look forward to? I mean, we've, we've clearly
highlighted some of the negativeaspects, but there's lots to be,
(25:43):
there's lots of positives out there, isn't there?
Absolutely. You know, breast cancer and this
is what I say, breast cancer is not a death sentence.
You know, there's so much going on with breast cancer now in
terms of treatment and management.
Now we know that people can get a breast conserving surgery or
(26:04):
lumpectomy, or even if they do get a mastectomy, there can be
reconstruction. So all of that is important for
women to know and help them makeinformed decisions, especially
because these women are younger and but the image is important
to them #2 is that even in termsof the medication and the drugs
(26:25):
available, there's so much the newer things, immunotherapy,
targeted therapies, you know, which are less intense to
chemotherapy. One of the things I'm going to
mention very quickly, for black women, hair loss is a big deal,
you know, and hair loss comes with chemotherapy most of the
(26:48):
time. And in the NHS we really don't
have culturally appropriate hairpieces to help these women.
One of the initiatives I'm doingis trying to get more, more,
more people or more culturally appropriate Afro textured wigs
(27:09):
into the NHS because those things are really, really
important for black women. But like you said, the
management of breast cancer has been revolutionized.
We have people living for longereven when the cancer has spread.
And all of those information areimportant for every woman, but
(27:30):
most importantly for these womenwere a little bit resistant to
having treatment. Yeah, no, it's a, it's a good
point about the the wigs. We find the same in the breast
surgery clinic with women who'vehad a mastectomy and they want
to wear what we call a prosthesis that doesn't tend to
be a culturally sensitive prosthesis to to reflect the
(27:54):
colour. So I I completely echo that it's
been a real pleasure talking to you and it's so nice to see
someone who is so enthusiastic despite all the challenges that
you've described. Thank you so much for inviting
me. I really enjoyed the
conversation. And I think that's one of the
(28:15):
things about inequalities that we need to spotlight that it's
the fact that one-size-fits-all approach doesn't work.
There's some people that need a little bit more than the others
and we just need to be able to identify those need, those in
need so that we can support thembetter.
(28:36):
Thank you very much. All right.
This is breast cancer uncovered.Now it's time to hear from
Helena Boyce, the three times cancer survivor.
Helena, thank you so much for chatting with us.
What was your own experience like?
(28:57):
My own experience started way, way back in 2014.
I was like yourself, Amy, a dancer.
I've been teaching dance for sort of 25 years and super,
super fit. I had ABS and everything, you
know, and I was loving life. And all of a sudden I, I will
(29:17):
admit I didn't check as much as I should have.
And so I was one of those peoplethat luckily accidentally found
a lump. And that lump happened to be
sort of it was like 2 1/2 by 4 1/2 centimetres.
So it was pretty huge. And I think I knew straight
away, I knew straight away that there was something not quite
(29:39):
right. And so obviously going through
the process to get myself through to the doctors, then to
the breast cancer clinic at the hospital where then I was told,
yes, eventually after the tests and stuff came through that I
had breast cancer. So it was all a bit of a shock.
(30:00):
It didn't make sense. I don't smoke, I don't drink, I
don't do any silly stuff. You know, I'm always in the gym
and keeping fit and healthy. And, and so really it was just a
big surprise there. There's no history of it in my
family either. So, you know, the experience
just from finding out was reallylike, Are you sure?
It doesn't make sense, you know?Yeah, and have a perfect example
(30:23):
of yourself how cancer doesn't discriminate, but I couldn't
imagine what it was like to be diagnosed not once, but three
times. Three, I know it's it's every
time I say it out loud, I just think really was it really three
times? I feel like I have to sort of
double check. But yes, it was the, the, my
(30:43):
first breast cancer diagnosis in2014.
I had a mastectomy, immediate reconstruction of that breast
with an implant and just after having all my chemo and, and
everything else and going through all the injections that
I was having for a year and finally just sort of feeling
like I was coming out the end ofit.
I then was diagnosed again in 2017, and that was a local
(31:07):
reoccurrence which came right back in exactly the same place
where the original lump was. You know, and it's funny because
obviously at the hospital, they didn't really see the urgency in
checking the breast that I'd hadremoved because they're like,
well, there's no breast tissue there, so there won't be any
cancer. But lo and behold, actually
there was. And so having to go through
(31:27):
chemotherapy all over again was,you know, that was a strain.
It was hard to accept and kind of go, OK, I've just got to, you
know, put my big girl pants on and just push through it.
Having two young kids as well, sort of trying to keep life as
as normal as possible for them. And then I'd wonderfully
(31:51):
celebrated my five years clear from that 2017 diagnosis.
And then it was just a few yearslater again, then 2023 when I
got diagnosed again, but this time it was in my other breast.
I was very blessed in a way thatmy third breast cancer diagnosis
was the opposite biology. So it meant that I didn't have
(32:13):
to have any chemo. So the hair stayed and you know,
it was relatively easy to do. I just had a lumpectomy and and
radiotherapy. So, you know, All in all, I
think my experience has been good because I'm still here,
right? So as we all are, we're all
(32:33):
still here. So it's it's been a good
experience as far as OK, that's you know, I've been through it
and out the other end of it. But of course, you know, there
were really tough things that come along with that as well of.
Course, but did you feel in any way you were discriminated
against as a black woman during your treatment?
(32:56):
I would love to say that I was not discriminated against, but I
would be lying. And it wasn't something that I
thought would be a thing. It wasn't something that I
thought would happen. I think it kind of started off
with the the slow introduction to feeling offered for me going
to the hospital and everybody was white.
(33:17):
You know, all the patients were white.
You know, we can't control what patients are going to be in the
hospital. But there wasn't really anybody
there that I could connect with,even on an age level.
I was 36 with my first diagnosis.
So even age wise I was kind of like, oh, everyone's really old,
you know. But the big thing for me when
discrimination really showed up was when I had received a
(33:39):
voucher to get a wig. And looking through the booklet,
the, you know, the little catalog with all the pictures of
the wigs that you can get, therewas a very small portion of
pages. It was like 2 pages at the back
for black hair wigs and they were all out of stock.
(34:00):
The the lady at the hospital would kind of said, yeah, you
know, we can definitely find youa wig that matches you and it's
what you want and what you askedfor.
And I sent her pictures of me and what she came back with.
It was like a cross between Dukes of Hazzard, the 118 advert
and like an old 80s episode of Dallas.
(34:22):
Like it was really, Amy's going to cry.
It was laughter, Yes, It was really bad.
It was really, really, really bad.
And I think I was so angry, but also so just mortified at what
I'd been given that it just didn't match at all.
(34:44):
The colour matched. That was it, you know, the hair,
the texture wasn't at all the same.
But then when I went and spoke to the wig lady and I kind of
said, look, you know, this is really not at all what I'm
looking for. Her response was, well, you
know, a lot of coloured ladies like to wear straight wigs.
(35:06):
And immediately in my in my head, I'm like, OK, well, I know
that you're not really supposed to call black people coloured,
right? So I don't know why you don't
know that at the moment, But also, are you asking me to get a
straight wig? Because me asking for something
that matches my identity is an inconvenience to you?
Would it just be easier for you to just Get Me Out of the way
and just give me a straight wig and be done with it, You know?
(35:29):
And so I had to kind of fight the fight really again, another
fight on top of one that I was already fighting to try and
insist on them giving me the money if I purchased my own wig,
which I ended up doing off of eBay.
So yeah, it's interesting you you mentioned that because even
for women who when they're offered a prosthesis, that there
(35:51):
can be some, there's a standard colour, I guess.
Yeah, it's definitely something that exists.
And you know, many friends of mine who are darker skinned than
I than I am, you know, I unfortunately, I do benefit
somewhat from my lighter skin privilege, right?
So, you know, if I had needed a prosthesis, I probably would
(36:13):
have had one that would have matched my skin colour close
enough. But I do have friends that, you
know, dark skinned women and they were given a pink
prosthesis to kind of put in their bra.
And, you know, on top of alreadyfeeling potentially that, you
know, your whole life as a womanis kind of just a big mishmash
(36:34):
because now I've got no boobs. So actually, we're not going to
make an allowance for you. It's, it's that feeling of what
am I not worthy of being made that allowance for?
Do I not deserve to be treated like just a human being who's
had cancer? So more women of colour, people
of colour need to go in for trials and offer themselves up
(36:58):
for, you know, things that you know to be investigated to, to
increase the amount of information we have to better
provide more appropriate services in this area.
So Helena, you're, you're involved with advocating, I
guess could you tell us a littlebit about what you're, what,
(37:21):
what sort of you're trying to increase awareness of?
Yeah, yeah. So Ubuntu, we've just turned
into a CIC, which is awesome. So opens up some, some doors for
funding and things like that, which I think we really need to
be able to push this. But it's anti racism and racial
literacy education organization.So we spend a lot of time in
(37:42):
schools and just sort of highlighting that the need for a
safe, open space for people to ask questions.
Often when it comes to discrimination, racism, bias,
microaggressions, there's this sort of the discomfort of
wanting to have the conversationin the 1st place because what if
I hurt someone's feelings? What if I say something wrong?
(38:05):
Oh, I don't want to embarrass myself.
So I kind of open up these awesome spaces where people can
just ask questions and you can say anything.
I won't be offended because I'veprobably heard it all already.
So putting people at rest, you know, and at ease to kind of go,
OK, I can ask a question. And at the end of the day, we're
all in that room for one purpose, which is to learn, for
(38:28):
us to be able to come together and understand more about how we
have things that connect us. And let's focus on the things
that separate us. I hope would would, you know,
create this wonderful flow of just human understanding.
And so, yeah, that's what Ubuntu's all about.
(38:49):
Thank you so much, Helena. Thank you so much for being so
open and honest and chatting with us today.
No problem. And Amy, you look absolutely
gorgeous. Great.
You're looking so, so great. And I'm so glad that you've come
through the other side of all ofthis.
And I know how hard it is. I know how hard it is.
So yeah, thank you very much forhaving me.
(39:10):
I really appreciate it. That's all for this episode.
A huge thank you to our guests. If you want more information, go
to breastcancernow.org and copperfield.org.
Thank you so much for listening.
Today we're talking about ethnicity, race and breast
cancer. Because the truth is, breast
cancer does not affect everyone equally.
Hello, I'm Amy Dowden. I'm one of the professional
dancers on Strictly Come Dancing.
(00:20):
Two years ago, I was unfortunately diagnosed with
breast cancer and after a mastectomy, chemotherapy.
I'm very proud now to be on the other side and super grateful to
be there. But now I'm on a mission to do
all I possibly can to raise awareness, break the stigma, and
to learn as much as I possibly can about this awful disease.
(00:43):
Hi, I'm Naran to one of the breast surgeons in Birmingham.
I've been looking after individuals who've been touched
by breast cancer for almost 2 decades and it's a real
privilege to be part of your journey and these collaborative
efforts to try and improve awareness about breast cancer.
(01:03):
Welcome to Breast Cancer Uncovered.
Let's talk now with journalist Satnam Rana Grindley.
We are joined by Satnam, an ex journalist who herself had
breast cancer eight years ago. Hello.
Hi Amy, really good to be here. Thanks for having me.
(01:25):
Tell us a little bit about your diagnosis, if that's OK.
OK, so I'll take you back to 2017.
It was pretty much mid August and I was in the shower, just a
regular get up, getting ready togo to work at BBC in Birmingham.
And I'm a bit of a self checker so I sort of have a mental note
(01:45):
of a week or so after my period finishes, have a bit of a feel
of your boobs, see if anything'schanged etcetera.
And it had changed. What I noticed was a very small
lump. And I pretty much shrieked out
and, you know, called my husbandand said have a feel of this,
this doesn't mean there, what's this, this is freaking me out.
And within the hour I was on thephone to my GP and I'd booked
(02:08):
myself in to to see the GP in in2 days time.
And I don't know, there was something that morning which
made me panic and made me act with speed I suppose.
And lo and behold, a week later I was in for my biopsy and had
(02:28):
unofficially confirmed that it was probably cancerous, but
that's just because I'm a pushy journalist and asked all the
right questions as I was going through the procedures.
And then it was confirmed at thebeginning of September, just a
few weeks later, that indeed I had invasive breast cancer.
So I found the one tumour it haspresented itself and
unfortunately there was a secondtumour as well.
(02:48):
And then I had a formastectomy and a reconstruction at the same
time. Thankfully I'd caught it early
enough to not have to go throughchemo or radio, but again I got
lucky because I was one of two patients in Worcestershire who
were funded by the NHS at that point to have a non Co type DX
(03:11):
test done. It's now on the NHS.
But that really did give me the indication of sort of likelihood
of reoccurrence, although I knowit's not about that, but
psychologically about that, but also whether there was a need
for chemotherapy or not. I had the ONCO test as well and
that when that came back, that determined for me that I needed
(03:33):
chemotherapy. But what exactly is it?
So the test you're talking aboutis a commercial test, so there's
three or four similar type tests, but what it does is it
takes part of the tumour that has been removed and it sends it
to a lab and does some further testing.
(03:55):
It is an example of bespoke medicine.
So that tumour type is analysed at a very, very in depth genetic
level to see actually if we wereto give this individual
chemotherapy, what would the benefits be?
(04:15):
Yeah. For me, I didn't want
chemotherapy and it was, I was obviously recommended it,
strongly recommended it and I didn't want it.
And last one, they said let's dothe uncle type then.
And then yes, when that came back high, then it was OK, I
have no choice because the science is there, the results
(04:36):
there. So I guess then it yeah, like
you said, it made it easier thento go, well, yeah, I have to
just get on with this and do it.And so, yeah, from my personal
experience, yes, it did help me.So in the South Asian community,
is cancer still a taboo subject?Yes, is what I would say overall
(05:00):
it is. I think I have seen improvements
over the last decade or so, but certainly when I was diagnosed
look, cancer equals death for most people.
I think as soon as you hear cancer, cancer, you think, Oh my
gosh, I'm going to die. And so, you know, for someone
like me, if somebody had died from cancer when we were young,
(05:23):
it was a bit hushed. It's in fact, I've just, I've
just travelled back from India, having met my, my extended
family in India. And somebody asked me, oh, you
know that problem you had several years ago when I said,
you mean my breast cancer? So it's a yes, it is to be.
You know, just saying the word out loud is to be.
How did your family react when you told them about your
diagnosis? I was thinking of what do you
(05:44):
think? I feel as if Mum, I should raise
some awareness and going to haveto go through this regardless.
Let's try and get some good out of this.
My mum's a nurse or is a retirednurse, so that helped.
And she says she sort of said, well, if you think you can help
other people, then yes, you should absolutely do that.
So I had them on side. I did have the one side.
(06:06):
They still found it difficult touse the word cancer.
There were other words used amongst the community, but it
almost forced them to face it and to talk about it openly with
their community as well and their community of friends.
So I was doing my thing professionally and personally,
but they also were being forced to talk about it when they were
(06:28):
in the Goodwara, their place of worship, or in their, you know,
over dinner with with their friends.
And so I guess in my own way, I was trying to erode that taboo
as well at the same time. Are there opportunities to
improve access to screening or recognition that breast
screening is, is important, I guess, in the South Asian
population? Absolutely.
(06:50):
I, I think actually it starts even before screening because I
was a self checker. So I know that because I can
speak Punjabi. So if there were any aunties I
was coming across, I was like check yourselves please.
That's the, that's the biggest thing.
You know that I, I picked up thephone to all my girlfriends and
said, do you check yourselves? Because I, I do and I have and
this has happened. Please check yourselves and,
(07:10):
and, and it was the same for sort of the aunties and asking
mum is he tell one person what the other person tells another
person. So I think in terms of breast
screening, So when you do hit you're 50 age and with with a
South Asian diaspora, there is more work to be done to raise
awareness. Because what I found was a lot
of women saying, oh, the appointments come through, but I
haven't been to the appointment.I've just ignored it.
(07:33):
There's not an open dialogue within communities, so I just
found my own avenues and ways ofcommunicating that.
So one was through obviously personal circles.
Secondly, using the BBC as a platform to communicate to a
wider audience and then leveraging places like the BBC
Asian Network to to speak directly to a South Asian
(07:54):
audience. I happened to be also diagnosed
around the time of breast breastCancer awareness Month.
So I did a few community based events and I think one of the
biggest ones I did, which was post treatment was actually at a
good Wara in Smethwick and they held a health awareness day and
it was around cancer and breast cancer.
(08:16):
And I think out of everything I did that was one of the most
impactful things. So I recall going to and I was
invited along to it to want it to Smethit Gutwara in the Black
Country. It was really, really important
event because it pulled upon thecongregation and the wider
community to come and interact with medics, but then also
people like me who had been through breast cancer.
(08:37):
But the biggest message I left them with with was check your
breasts, get to know them. If you notice the difference, do
not wait, Pick up the phone to your GP.
It's better to present early than not to present at all or to
present too late. So that was one message and the
second one was I can see there are a lot of aunties in this
(09:00):
audience. You will have an invite from the
NHS to go to your regular breastscreening.
We're privileged to have access to this service, please use it.
And every time I have the privilege of speaking to a wide
audience like that, those are the 2 clear messages I try and
leave them with. And you know, if you can, if I
(09:20):
think even if you've made a difference with one person, they
will go and hopefully speak to afriend, a member of the family.
And so the concentric circle of communications and health
awareness spreads. And and that's sort of how how I
look at it even eight years on. Yeah, amazing.
Thank you so much. And thank you for raising
awareness and yeah, turning a negative into a positive and
(09:44):
trying to help others. That's exactly what you've done
though, Amy as well. And I think you know anybody who
can who can do that to make a difference.
Then then in some ways it's almost rationalizing why you
went through it in the first place.
Yeah, absolutely. Thank you so much, Aaron.
(10:07):
You've been speaking to a woman who's doing some important work
around health disparities and breast cancer outcomes in
minority communities. My name is Doctor Lubu Kaliade,
I'm a consultant medical oncologist and the breast
(10:29):
oncology tumulated at the University Hospital of Leicester
NHS Trust. Now, this is a subject that's
very close to your heart. What do you see is the current
trends, the current data of people from ethnic backgrounds
and breast cancer? So we do see a stock difference
(10:53):
in outcomes of patients. And when I say outcome, I mean
survival outcomes. There's a higher number of white
people who are affected with breast cancer.
However, when we look at the mortality, we see that it
doesn't correlate the more people from ethnic minorities
dying from breast cancer compared to their white
(11:16):
counterparts because most of thetime they present late.
So if we look at the data, we see that over 70% of black women
that present were present in stage 3 to 4, which are the
latest stages of breast cancer compared to white women.
(11:38):
And as we do know with breast cancer, the earlier you present
then the better your outcomes. So that also contributes to the
poorer outcomes we see in ethnicminorities, especially black
communities. As a black woman umm in the UK
if you do get breast cancer you're 4 times likely to die
(12:01):
from the disease then from if you're a white person and most
of the reason is because of the late presentation.
Also there's the aggressive typeof the cancer itself.
So black women who tend to have an aggressive subtype of breast
cancer called triple negative breast cancer, which usually has
(12:24):
less treatment options as well. So that also factors into some
of the reason for that stock difference in mortality.
And I guess what what you're saying is that there's a higher
proportion of triple negative breast cancers in black women,
(12:45):
Is that right? Yes, about 40%.
About 40% and in terms of triplenegative breast cancers in in
black women, I guess is that something that we see just in
the UK or is that the sort of trends that we get outside the
UKI guess in in Africa and and other parts?
(13:07):
So it's the trend. So this has to do with the
ethnicity that we're talking about.
So it's all it's usually black women, most most especially
people from West African descenttend to have more triple
negative breast cancer. OK.
Why do you think amongst the black women community there is
(13:32):
this later presentation? Is that something from a
cultural perspective from the women, or is there some sort of
bias within our system that actually is contributing to
that, or or both? There is that culture of it.
(13:52):
And so we do know that cancer isa taboo word in a lot of ethnic
minorities. People don't talk about cancer
because of the fear, because of the stigma that comes with it.
Also, people feel like if they talk about it, they would get
it. So they prefer not to say
anything. But also there is that
(14:13):
socioeconomic determinant of health as well, where a lot of
people in the black community are usually deprived.
So they tend not to focus much on health.
Health is a list on their priorities.
So they would focus on trying tomake ends meet, have a roof over
their head. So when it comes to going for
(14:37):
things like screening or trying to focus on their health, they
tend to play it back, you know, So that's that bit.
So but also there is systemic bias.
So let me put that into context.So currently the screening, the
breast screening service available in the UK is for women
aged 50 to 71. And unfortunately breast cancer
(15:02):
in black women present 21 years earlier than white women on the
average, which means that the system already is biased against
black women because that screening has not been designed
for them. So we tell them to go for
screening, but then screening isonly for people 50.
(15:25):
So already those women already having cancers in that younger
age. So there's no way to catch it
early. So a lot of the reforms or the
lot of interventions that I do is more about awareness and
education and self examination. Because currently that's the
(15:45):
only way I can help women present early because the system
would not help them because of how rigged the whole thing is
about the timing of the people that come for breast screening.
We need to look at the demographics of the people that
(16:06):
are now in the UK. One in four women in the UK
would come from an ethnic minority right now, based on the
2022 census, which means that our system needs to reflect
that. How would one consider screening
younger black women? I guess it's it's going to be
(16:29):
quite challenging if we're goingto have limited opportunities to
improve screening imminently. What about educating women about
when to seek help if they have breast symptoms?
A lot of the work I do is education because we've seen
that a lot of people don't even know what to look out for.
(16:52):
You meet a patient with a fungating breast cancer.
What fungating minutes is that is a cancer that's already all
straight in and bleeding and they've been sitting on it.
Or they come and say, oh, but I felt this lump about two years
ago. I didn't know it meant anything.
But it's also not knowing that there are some other symptoms
(17:13):
that might present in a black person that doesn't present in a
white person. And this is what I'm talking
about, representation. So there was a survey done by
Black women rising I think in 2022, um, that showed that 48%
of GPS did not know how to recognize breast cancer in black
(17:36):
women because the tones in the textbook, everything looked
different, you know, so they would come and then they would
be sent by the GP to say, no, this is not breast cancer.
Also, the age demographics didn't fit the picture because
they were coming earlier. And as you do know, we know that
not all lumps are malignant or are cancerous.
(17:58):
And when, when you see your patients in your in your clinic,
do you tend to observe any differences in accepting
treatments as a as a cultural orany differences between races or
do you think that it's quite evenly distributed?
(18:19):
It's not so there is a big difference.
So fate is a big thing in the black community and I think in
most, in some some ethnic minorities as well, because I've
seen something similar with South Asian community.
They the, the fate is a big thing, whether they're
Christians of Muslim. So if you say that you're going
(18:41):
to offer something to them, thenit's challenging because it kind
of refrain from it and they're resistant to it.
You will get there. And which is the reason why I
think there's a need for cultural training in, in, in,
in, in the NHS to understand that some people need a little
(19:03):
bit more than the others before they get there.
In, you know, for a white person, you'll sit down and tell
them that this is the plan, you know, and they're open and
they're like, when can I start? For a black person, due to the
culture and the beliefs and concerning, you know, the
treatment and cancer itself, it becomes a little bit more
(19:25):
challenging to get them to accept it first because
acceptance is, is, is, is a mindset as well.
People have thought that cancer is synonymous to death.
So they wonder, why do I need toget this treatment if I'm going
to die anyway? Or because they come presenting
late, they tend to have a more complex or more aggressive
(19:47):
treatment pattern, which is whata lot of people see out there.
So they'll tell you, oh, I saw my auntie go through
chemotherapy. She was so sick.
She, I don't want to accept thispoison.
And that's why you need to take your time with this group of
people and just make sure that you explain in the right way and
what to do. And eventually a lot of them do
(20:09):
understand, but it takes a little bit longer.
Also, coming in with someone else is very powerful.
I try to. To make sure that patients don't
come by themselves. People come in so much fear.
There's so much uncertainty about what's going to happen.
They'll traumatize basically, you know, and they don't hear
(20:32):
what you're saying. But when you come with someone,
that person is there to help us.A second pair of ears, you know,
they're noting things down for you.
I've also asked that you can, you know, ask your oncologist
very politely if you could record the conversation because
then you can go back and listen and use it for reference as to
(20:54):
what has been said. And that can also trigger for
the questions that you can direct either to your oncology
team or to your clinical nurse specialist.
OK, thanks. And so let's talk about a
scenario where you're in your clinic and you're seeing a black
woman diagnosed with breast cancer.
(21:17):
And are there any current challenges barriers of accessing
or offering or even black women accepting clinical trials in
your have you that that you've observed?
So I think it's no longer news Narin that clinical trials are
not representative. There's no diversity.
(21:39):
A lot of the drugs and medications we have today to
treat cancer was mainly trialledin white people and that itself
is a problem. We know that there's a need to
involve other ethnicity because of the pharmacogenetics that's
(22:01):
involved. We need to know how this drug is
broken down, how it works, the side effects potentially if we
need to switch doses for, for, for, for other ethnicities.
In terms of the clinical trials,it's always been quite difficult
to get Black people on it, and Idon't blame them.
(22:21):
That's that historical mistrust where black people have been
used for the wrong things. So that in itself make them a
little a bit nervous about doingthat. 2 is that it takes more
time to talk about clinical trials, the inclusion, the
exclusion criterias. So there's a bit where people
(22:42):
think clinical trials is the last resort.
So they don't think that it's something that would be offered
to them at the beginning, you know, which is something that
we're trying to change that that's a myth.
Clinical trials can be the firstthing that can be offered to
you. It doesn't have to be the last
resort. Also the logistics, you know,
(23:03):
clinical trials involves you come in more into into clinics
or into hospitals because as women are really diagnosed at a
younger age, they have more logistical problems in terms of
getting child minders or childcare or living having to
take time off work because a lotof them are either kind of newer
(23:28):
to the country so they don't getbenefits.
So all of this kind of play a role in the decision of being
involved. We need to structure and tailor
this to fit this ethnicity and not A1 size fiddle approach,
which is always what we've always done.
(23:49):
I guess the question is, what can one do in the community?
How can we instill awareness specifically for Black women in
the community rather than amongst the healthcare
professionals? Are there any thoughts you had
on that? For me, I think that's one of
the most important thing becausethat's what's going to change
(24:14):
that one, late presentation and two, prevention, because
prevention and early diagnosis are the things that are going to
change mortality for this group of women.
OK. And it's very important to go
into this grassroot, and that's what I do.
(24:34):
So you go in, you're looking forchampions, you're looking for
people, trusted people in the community that they would listen
to because that's one of the cultural nuances that we have.
We tend to listen. Leadership is a big deal for us.
We tend to listen to people thatmatters.
So which is that's why I always say, you know, faith-based
(24:58):
churches, the leaders of faith-based churches, the
community heads, the people in the schools, these are very
important people to get on board.
Then they know that it's important for their, you know,
leader to buy in into it and they tend to listen more.
(25:19):
So if, if you were faced with a newly diagnosed, a black lady
with breast cancer, what, what are the, the real positive
aspects in modern day breast treatment that, that they can
look forward to? I mean, we've, we've clearly
highlighted some of the negativeaspects, but there's lots to be,
(25:43):
there's lots of positives out there, isn't there?
Absolutely. You know, breast cancer and this
is what I say, breast cancer is not a death sentence.
You know, there's so much going on with breast cancer now in
terms of treatment and management.
Now we know that people can get a breast conserving surgery or
(26:04):
lumpectomy, or even if they do get a mastectomy, there can be
reconstruction. So all of that is important for
women to know and help them makeinformed decisions, especially
because these women are younger and but the image is important
to them #2 is that even in termsof the medication and the drugs
(26:25):
available, there's so much the newer things, immunotherapy,
targeted therapies, you know, which are less intense to
chemotherapy. One of the things I'm going to
mention very quickly, for black women, hair loss is a big deal,
you know, and hair loss comes with chemotherapy most of the
(26:48):
time. And in the NHS we really don't
have culturally appropriate hairpieces to help these women.
One of the initiatives I'm doingis trying to get more, more,
more people or more culturally appropriate Afro textured wigs
(27:09):
into the NHS because those things are really, really
important for black women. But like you said, the
management of breast cancer has been revolutionized.
We have people living for longereven when the cancer has spread.
And all of those information areimportant for every woman, but
(27:30):
most importantly for these womenwere a little bit resistant to
having treatment. Yeah, no, it's a, it's a good
point about the the wigs. We find the same in the breast
surgery clinic with women who'vehad a mastectomy and they want
to wear what we call a prosthesis that doesn't tend to
be a culturally sensitive prosthesis to to reflect the
(27:54):
colour. So I I completely echo that it's
been a real pleasure talking to you and it's so nice to see
someone who is so enthusiastic despite all the challenges that
you've described. Thank you so much for inviting
me. I really enjoyed the
conversation. And I think that's one of the
(28:15):
things about inequalities that we need to spotlight that it's
the fact that one-size-fits-all approach doesn't work.
There's some people that need a little bit more than the others
and we just need to be able to identify those need, those in
need so that we can support thembetter.
(28:36):
Thank you very much. All right.
This is breast cancer uncovered.Now it's time to hear from
Helena Boyce, the three times cancer survivor.
Helena, thank you so much for chatting with us.
What was your own experience like?
(28:57):
My own experience started way, way back in 2014.
I was like yourself, Amy, a dancer.
I've been teaching dance for sort of 25 years and super,
super fit. I had ABS and everything, you
know, and I was loving life. And all of a sudden I, I will
(29:17):
admit I didn't check as much as I should have.
And so I was one of those peoplethat luckily accidentally found
a lump. And that lump happened to be
sort of it was like 2 1/2 by 4 1/2 centimetres.
So it was pretty huge. And I think I knew straight
away, I knew straight away that there was something not quite
(29:39):
right. And so obviously going through
the process to get myself through to the doctors, then to
the breast cancer clinic at the hospital where then I was told,
yes, eventually after the tests and stuff came through that I
had breast cancer. So it was all a bit of a shock.
(30:00):
It didn't make sense. I don't smoke, I don't drink, I
don't do any silly stuff. You know, I'm always in the gym
and keeping fit and healthy. And, and so really it was just a
big surprise there. There's no history of it in my
family either. So, you know, the experience
just from finding out was reallylike, Are you sure?
It doesn't make sense, you know?Yeah, and have a perfect example
(30:23):
of yourself how cancer doesn't discriminate, but I couldn't
imagine what it was like to be diagnosed not once, but three
times. Three, I know it's it's every
time I say it out loud, I just think really was it really three
times? I feel like I have to sort of
double check. But yes, it was the, the, my
(30:43):
first breast cancer diagnosis in2014.
I had a mastectomy, immediate reconstruction of that breast
with an implant and just after having all my chemo and, and
everything else and going through all the injections that
I was having for a year and finally just sort of feeling
like I was coming out the end ofit.
I then was diagnosed again in 2017, and that was a local
(31:07):
reoccurrence which came right back in exactly the same place
where the original lump was. You know, and it's funny because
obviously at the hospital, they didn't really see the urgency in
checking the breast that I'd hadremoved because they're like,
well, there's no breast tissue there, so there won't be any
cancer. But lo and behold, actually
there was. And so having to go through
(31:27):
chemotherapy all over again was,you know, that was a strain.
It was hard to accept and kind of go, OK, I've just got to, you
know, put my big girl pants on and just push through it.
Having two young kids as well, sort of trying to keep life as
as normal as possible for them. And then I'd wonderfully
(31:51):
celebrated my five years clear from that 2017 diagnosis.
And then it was just a few yearslater again, then 2023 when I
got diagnosed again, but this time it was in my other breast.
I was very blessed in a way thatmy third breast cancer diagnosis
was the opposite biology. So it meant that I didn't have
(32:13):
to have any chemo. So the hair stayed and you know,
it was relatively easy to do. I just had a lumpectomy and and
radiotherapy. So, you know, All in all, I
think my experience has been good because I'm still here,
right? So as we all are, we're all
(32:33):
still here. So it's it's been a good
experience as far as OK, that's you know, I've been through it
and out the other end of it. But of course, you know, there
were really tough things that come along with that as well of.
Course, but did you feel in any way you were discriminated
against as a black woman during your treatment?
(32:56):
I would love to say that I was not discriminated against, but I
would be lying. And it wasn't something that I
thought would be a thing. It wasn't something that I
thought would happen. I think it kind of started off
with the the slow introduction to feeling offered for me going
to the hospital and everybody was white.
(33:17):
You know, all the patients were white.
You know, we can't control what patients are going to be in the
hospital. But there wasn't really anybody
there that I could connect with,even on an age level.
I was 36 with my first diagnosis.
So even age wise I was kind of like, oh, everyone's really old,
you know. But the big thing for me when
discrimination really showed up was when I had received a
(33:39):
voucher to get a wig. And looking through the booklet,
the, you know, the little catalog with all the pictures of
the wigs that you can get, therewas a very small portion of
pages. It was like 2 pages at the back
for black hair wigs and they were all out of stock.
(34:00):
The the lady at the hospital would kind of said, yeah, you
know, we can definitely find youa wig that matches you and it's
what you want and what you askedfor.
And I sent her pictures of me and what she came back with.
It was like a cross between Dukes of Hazzard, the 118 advert
and like an old 80s episode of Dallas.
(34:22):
Like it was really, Amy's going to cry.
It was laughter, Yes, It was really bad.
It was really, really, really bad.
And I think I was so angry, but also so just mortified at what
I'd been given that it just didn't match at all.
(34:44):
The colour matched. That was it, you know, the hair,
the texture wasn't at all the same.
But then when I went and spoke to the wig lady and I kind of
said, look, you know, this is really not at all what I'm
looking for. Her response was, well, you
know, a lot of coloured ladies like to wear straight wigs.
(35:06):
And immediately in my in my head, I'm like, OK, well, I know
that you're not really supposed to call black people coloured,
right? So I don't know why you don't
know that at the moment, But also, are you asking me to get a
straight wig? Because me asking for something
that matches my identity is an inconvenience to you?
Would it just be easier for you to just Get Me Out of the way
and just give me a straight wig and be done with it, You know?
(35:29):
And so I had to kind of fight the fight really again, another
fight on top of one that I was already fighting to try and
insist on them giving me the money if I purchased my own wig,
which I ended up doing off of eBay.
So yeah, it's interesting you you mentioned that because even
for women who when they're offered a prosthesis, that there
(35:51):
can be some, there's a standard colour, I guess.
Yeah, it's definitely something that exists.
And you know, many friends of mine who are darker skinned than
I than I am, you know, I unfortunately, I do benefit
somewhat from my lighter skin privilege, right?
So, you know, if I had needed a prosthesis, I probably would
(36:13):
have had one that would have matched my skin colour close
enough. But I do have friends that, you
know, dark skinned women and they were given a pink
prosthesis to kind of put in their bra.
And, you know, on top of alreadyfeeling potentially that, you
know, your whole life as a womanis kind of just a big mishmash
(36:34):
because now I've got no boobs. So actually, we're not going to
make an allowance for you. It's, it's that feeling of what
am I not worthy of being made that allowance for?
Do I not deserve to be treated like just a human being who's
had cancer? So more women of colour, people
of colour need to go in for trials and offer themselves up
(36:58):
for, you know, things that you know to be investigated to, to
increase the amount of information we have to better
provide more appropriate services in this area.
So Helena, you're, you're involved with advocating, I
guess could you tell us a littlebit about what you're, what,
(37:21):
what sort of you're trying to increase awareness of?
Yeah, yeah. So Ubuntu, we've just turned
into a CIC, which is awesome. So opens up some, some doors for
funding and things like that, which I think we really need to
be able to push this. But it's anti racism and racial
literacy education organization.So we spend a lot of time in
(37:42):
schools and just sort of highlighting that the need for a
safe, open space for people to ask questions.
Often when it comes to discrimination, racism, bias,
microaggressions, there's this sort of the discomfort of
wanting to have the conversationin the 1st place because what if
I hurt someone's feelings? What if I say something wrong?
(38:05):
Oh, I don't want to embarrass myself.
So I kind of open up these awesome spaces where people can
just ask questions and you can say anything.
I won't be offended because I'veprobably heard it all already.
So putting people at rest, you know, and at ease to kind of go,
OK, I can ask a question. And at the end of the day, we're
all in that room for one purpose, which is to learn, for
(38:28):
us to be able to come together and understand more about how we
have things that connect us. And let's focus on the things
that separate us. I hope would would, you know,
create this wonderful flow of just human understanding.
And so, yeah, that's what Ubuntu's all about.
(38:49):
Thank you so much, Helena. Thank you so much for being so
open and honest and chatting with us today.
No problem. And Amy, you look absolutely
gorgeous. Great.
You're looking so, so great. And I'm so glad that you've come
through the other side of all ofthis.
And I know how hard it is. I know how hard it is.
So yeah, thank you very much forhaving me.
(39:10):
I really appreciate it. That's all for this episode.
A huge thank you to our guests. If you want more information, go
to breastcancernow.org and copperfield.org.
Thank you so much for listening.
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