Episode Transcript
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This podcast contains the personal stories,opinions and experiences of its speakers, rather
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than those of Breast Cancer Now. Welcome to theBreast 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 authorand I live with secondary breast cancer. Today's
episode we have something a little bit differentin store for you. This season we asked all our
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guests the same question. If you could change onething in terms of breast cancer diagnosis,
treatment and beyond, what would it be? Theiranswers range from providing better mental
health and exercise support, to making surepeople from all backgrounds have access to the
same treatments and resources. We've all heard ofpatients whose symptoms were initially
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dismissed by their doctors, or who were told theywere too young for breast cancer. Clare O'Donnell
from Make Seconds Count, a charity that supportspeople living with secondary breast cancer,
wants to live in a world where every person is takenseriously, so that late diagnosis of primary or
secondary breast cancer is a thing of the past. Imean, for me, I guess, and this is probably coming
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from a personal experience, is that I would lovefor the doctors or the nurses or whoever to maybe
just respond when you come with a query,necessarily. I had a lot of time where I had to fight
to say that I had this condition and they weretelling me it was mastitis for six weeks and it
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wasn't mastitis. I had no kids, I wasn'tbreastfeeding, but almost I felt I had to fight and
I feel like if I hadn't had to have waited thoseeight weeks, my own prognosis may have been
different. And I think for secondary breastcancer, specifically, there's a lot of ladies
that go back to their GPs or go back to their team andsay, I've got a bad back or I've got a pain. And it's
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often they're not joining the dots and they're notgoing, well, this person had breast cancer, why
don't we just investigate this? And it takes along, long time, but by that point, it may be too
late and you may be further along in your secondarybreast cancer journey as you would need to be. So
for me, I would like the patient to be believed a bitmore when, or at least investigated, whether that
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be with a scan or checking your notes and seeingthat actually they're not just coming because
they've got a sore back, they're coming becausethey're concerned about something else. So for me
personally, I would like that to be a bit moreaccessible and obviously lots more research,
lots more treatment options. That would bewonderful. Absolutely. Fern Maxded and her mum,
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Jan, who were both diagnosed with breast cancer in2022, would like more awareness of the signs and
symptoms, educating people to check themselvesand to know that anyone can get breast cancer. I
would love to see when women get their smear tests.Obviously, we get those at a much longer age. I
would really love whoever does this smear test tosay, have you checked your boobs lately? Because
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that is free, it won't cost the NHS anything, ittakes seconds, but it brings to the patient that
they should be aware of it and that it will dispelany misconceptions that breast cancer only
happens to people who are of mammogram age. I thinkthat's something really simple that could be done
that would just bring it to the forefront ofyounger women's lines. That's a great idea. So in
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the cervical smear test, that is done at people'sGPs just for the nurse to ask, have you checked your
boobs lately? And maybe a leaflet. Yeah, that's areally good idea. Jan, yeah, I think probably when
we are talking about it, just to be really explicitand saying to people, it really could happen to
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you. Because we all hear so many stories or heard somany stories before us that are really heart
breaking. You think, oh, that's awful. Like afriend of mine, her daughter was diagnosed just
before COVID, she was 30. And I thought that is justabsolutely awful. And I couldn't imagine when it
was like my friend for a daughter to be diagnosed.But it didn't once cross my mind that that could be
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my daughter. I don't know why to this day, why Ididn't think that. But we just aren't used to
thinking. I'm really accepting that that could beus. So perhaps, much more explicitly, you know,
this really could be you. Make sure, sure that youunderstand that. Sonja Gale spoke to us about
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breast cancer in the workplace. Sonja would liketo see artificial intelligence used both for
diagnosis and to create personalized treatmentplans for patients. I would like to ask you the
question that we ask all our guests on the BreastCancer Now podcast, which is if you could see one
change in diagnosis and treatment of breastcancer in the coming years, what would it be? Oh,
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we've seen so many advances. And you obviouslywant that to continue. I think AI, it can be a
wonderful tool. It's not a replacement for adoctor. But it can be a great tool for early
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diagnosis. I think the Holy Grail is a simple bloodtest that can detect cancer in a meaningful way.
And then aligning that to a tailored treatment,which is suitable for you and you alone. And that
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treatment is designed to maximize the bestoutcomes for you. And I think if we can get to that,
then I would say we've probably achieved as a as acharity what we set out to achieve, which is for
everyone to be diagnosed early. And when they arediagnosed to live and live well. Barbara Wilson,
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who runs the organization Working with Cancer,wants to see treatments that are milder than the
current harsh chemotherapy and that focus more onthe patient's quality of life. Well, ideally,
they'd be a cure. I don't think cancer will everdisappear. I think it'll always be part of our
lives. But I think what would be make a differenceis to have treatments that aren't so invasive and
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difficult to live with. So I think the issue is howcan we make treatment something that people can
cope with more easily. Talking of quality of life,Dr. Sam Orange, a clinical exercise physiologist
and researcher at Newcastle University wants allpatients to have access to exercise. I would like
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to see physical activity and support and referralto be routinely offered as part of standard
standard follow up care for women who've hadbreast cancer and breast cancer treatment. We
hope, I hope that our project called Purex canprovide a feasible and acceptable model to be able
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to do that. Fran Whitfield is a cancer exercise andrehab specialist who was diagnosed with
secondary breast cancer when she was just 25. LikeDr. Sam, Fran wants all patients to feel empowered
to keep moving their bodies, whatever the stage oftheir cancer. If one thing could change in terms of
breast cancer diagnosis, treatment and beyond inthe next few years, what would you like to happen?
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When you have that diagnosis and you receive thatas part of your information that you get, whether
that be from the team or the leaflets that you getand things like that, you have access to an
exercise specialist. You have access to yournursing team, you're on a oncologist, you have
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access to the dieticians in the hospital,physiotherapists, but we don't have enough
access to a cancer exercise and rehabilitationspecialist. That's the number one thing that I
really want everyone to be able to have access to orpointed in the right direction because people
don't know that we exist and people don't know thatactually exercise is so important for your
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treatment and you can still trust your body whenyou're going through treatment to be able to be
able to do these things and not feel weak and notfeel scared to move in certain ways. When it comes
to mental health, Dr Naz Derichan from the BrickCentre wants patients to be given the tools to cope
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emotionally with breast cancer. I would like tosee that there are more provisions for
psycheducational support and more effectiveprograms for improving mental health,
sustainable solutions for women so that they arenot buying time to survive, but they're actually
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thriving. They believe that they can go out thereand do it. So the psychological aspects of breast
cancer and empowering women, I want to seehappening in a strategic way, not like in a dotted
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way. Well, we've got this counseling programthere and then so and so has developed this. We want
women to be independent as well. We don't want themto be reliant on constant counseling and constant
psychological treatments. We want to give themthe tools that they can independently apply. I
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know it sounds a bit fair retail, but it can be done.Psychological support doesn't factor in the
cancer care pathway and it needs to. Emma Campbellis a podcaster and motivational speaker with
secondary breast cancer. She wants to see morestories of people surviving and thriving long
term and to share the message that we can all belimitless. If you could see one change in terms of
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the diagnosis, treatment or recording of breastcancer in the coming years, what would it be? Gosh,
I mean, obviously it goes without saying that alltreatments and all advances available to all. I
mean, that's just, you know, that's kind of soobvious. I think more examples of people living in
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the long term, you know, more of the positivestories, not just within our community, but in the
media and kind of, you know, people beingrepresented, you know, as living with what is more
and more a chronic disease for many rather than aterminal one. You know, that would be a wonderful
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change. And I think a more deeply rooted beliefthat life can still continue and be big and full of
possibility and expansion despite what on papercan seem grim. Dr Lizzo Reardon, a breast cancer
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surgeon who was diagnosed with breast cancerherself, wants more funding and research to be put
into extending the lives of secondary breastcancer patients. I think coming off patient
choice, I'd like trials to be open to everybody,wherever you are, off the back of COVID and all the
virtual technology and more research andmetastatic cancer patients. We need more quick
access to drugs and everyone should be in a trialjust to try and help. I think there's too much on
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prevention and the biggest risk factors of breastcancer being a woman and getting older. And I think
we need more money to help all of us stay alive for aslong as possible. Kreena and Toril run the South
Asian supernovas supporting women within theSouth Asian community. Kreena wants to see people
from all backgrounds in breast cancer messagingwhile Toril wants marginalised groups to be
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included in data and research. So we need tocollect more data and we need more research both in
primary and secondary breast cancer butparticularly including marginalised groups
including people of colour and differentethnicities but also other marginalised groups
too. Thank you. For me I think it'srepresentation, representation in media,
representation in campaigns, representation inclinical trials, representation in the oncology
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space overall. Dan Wills works for theorganisation that gives charities like Breast
Cancer Now the Green Tick as trusted informationproviders. He wants all patients to have access to
the right information allowing them to makeinformed choices about their own health. I think
something that's really important is thatpatient choice. You've been able to, like you were
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saying earlier, you'd like to see it from threepeople rather than your team at your hospital. I
think that's something that's really importantthat people can get access to that information and
make a choice that's right for them because likeLiz was saying, not everybody is the same. You'll
have some people that are healthy, some peoplethat are interested in their diet, you'll have
others that are like, actually I know I might onlybe around for another five years but if I had
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treatment my lifestyle is going to change and Idon't want that but without that good quality
information that you can trust you can't do that,that's something that I'd like to see. In a similar
vein, patient Fiona Stevenson is urginghealthcare professionals to listen. She wants
doctors to respect our wishes when it comes to ourown bodies and our own health. If you could change
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one thing in terms of breast cancer diagnosis,treatment and beyond in the coming years, what
would it be? Listen to the patients and for thosethat want mastectomies that do not want
reconstruction, please, please, please listento them and listen to their reasons as to why do not
force us to go through the three months counselingenough to prove we're a sound mind to make that
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decision. That's degrading, we don't want mentalabuse like that, we need to be supported and that is
just my one wish. Paralympic champion ErinKennedy is a campaigner for breast cancer
awareness and early detection. She wants toencourage patients to have the confidence to ask
for what they need in the medical setting. I thinkit would be to kind of empower patients to have the
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confidence to advocate for themselves, to be ableto ask questions without time limits, to explore
the options that are best for them with healthcareprofessionals that aren't stretched and have the
capacity to listen to them and hopefully act onwhat they want. That goes all the way through from
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early diagnosis through to choice over surgeryand things like that. And I think that encouraging
individuals that you can advocate for your ownhealth and knowing that that could be kind of
received well as well. Now for something a littlebit different. Hannah Gardner, a secondary
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breast cancer patient and self-confessed SpiceGirls superfan said she'd like to employ a little
bit of girl power. I'm going to reword the questionthat we asked at the end of this podcast to
everyone. If you had the power to change oneelement of breast cancer diagnosis and treatment
within the next few years, what would it be? Oh,that's a big one. If I had the power to change one
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element of it, so just one thing, can I change itsexistence? Sure. Yeah, there. Absolutely.
That's what the Spice Girls would do. It doesn'texist. There we are. It's gone. Yeah, I think that
might be the best answer we've had today. Breastcancer now's goals are to stop people dying from
breast cancer, to support people to live well withthe disease, to accelerate detection, and to
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improve prevention. The charity's vision is thatby 2050, everyone diagnosed with breast cancer
will not only live, but live well. As for me, I'dlike global pharmaceutical companies and
scientists to put aside profit and rivalry andwork together to find a cure for cancer. We did this
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with COVID, and yet cancer is the real big C,killing hundreds of thousands of people every
single year in the UK alone. If we can show the humanface of cancer that we are people with families and
careers and lives and hopes and dreams, then oneday, perhaps even in my short lifetime, we will
find a cure. Thank you for listening to the BreastCancer Now podcast, and stay tuned for season six,
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coming soon. If you enjoyed this episode of theBreast Cancer Now podcast, make sure to subscribe
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them. You can find support and information on ourwebsite, breastcancernow.org, and you can
follow Breast Cancer Now on social media at BreastCancer Now. All the links mentioned in this
episode are listed in the show notes in yourpodcast app. Thank you for listening to the Breast
Cancer Now podcast.