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's

episode we have something a little bit different in store for you. This season we asked all our

guests the same question. If you could change one thing in terms of breast cancer diagnosis,

treatment and beyond, what would it be? Their answers range from providing better mental

health and exercise support, to making sure people from all backgrounds have access to the

same treatments and resources. We've all heard of patients whose symptoms were initially

dismissed by their doctors, or who were told they were too young for breast cancer. Clare O'Donnell

from Make Seconds Count, a charity that supports people living with secondary breast cancer,

wants to live in a world where every person is taken seriously, so that late diagnosis of primary or

secondary breast cancer is a thing of the past. I mean, for me, I guess, and this is probably coming

from a personal experience, is that I would love for 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 were telling me it was mastitis for six weeks and it

wasn't mastitis. I had no kids, I wasn't breastfeeding, but almost I felt I had to fight and

I feel like if I hadn't had to have waited those eight weeks, my own prognosis may have been

different. And I think for secondary breast cancer, specifically, there's a lot of ladies

that go back to their GPs or go back to their team and say, I've got a bad back or I've got a pain. And it's

often they're not joining the dots and they're not going, well, this person had breast cancer, why

don't we just investigate this? And it takes a long, long time, but by that point, it may be too

late and you may be further along in your secondary breast cancer journey as you would need to be. So

for me, I would like the patient to be believed a bit more when, or at least investigated, whether that

be with a scan or checking your notes and seeing that actually they're not just coming because

they've got a sore back, they're coming because they're concerned about something else. So for me

personally, I would like that to be a bit more accessible and obviously lots more research,

lots more treatment options. That would be wonderful. Absolutely. Fern Maxded and her mum,

Jan, who were both diagnosed with breast cancer in 2022, would like more awareness of the signs and

symptoms, educating people to check themselves and 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 to say, have you checked your boobs lately? Because

that is free, it won't cost the NHS anything, it takes seconds, but it brings to the patient that

they should be aware of it and that it will dispel any misconceptions that breast cancer only

happens to people who are of mammogram age. I think that's something really simple that could be done

that would just bring it to the forefront of younger women's lines. That's a great idea. So in

the cervical smear test, that is done at people's GPs just for the nurse to ask, have you checked your

boobs lately? And maybe a leaflet. Yeah, that's a really good idea. Jan, yeah, I think probably when

we are talking about it, just to be really explicit and saying to people, it really could happen to

you. Because we all hear so many stories or heard so many stories before us that are really heart

breaking. You think, oh, that's awful. Like a friend of mine, her daughter was diagnosed just

before COVID, she was 30. And I thought that is just absolutely 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

my daughter. I don't know why to this day, why I didn't think that. But we just aren't used to

thinking. I'm really accepting that that could be us. So perhaps, much more explicitly, you know,

this really could be you. Make sure, sure that you understand that. Sonja Gale spoke to us about

breast cancer in the workplace. Sonja would like to see artificial intelligence used both for

diagnosis and to create personalized treatment plans for patients. I would like to ask you the

question that we ask all our guests on the Breast Cancer Now podcast, which is if you could see one

change in diagnosis and treatment of breast cancer in the coming years, what would it be? Oh,

we've seen so many advances. And you obviously want that to continue. I think AI, it can be a

wonderful tool. It's not a replacement for a doctor. But it can be a great tool for early

diagnosis. I think the Holy Grail is a simple blood test 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

treatment is designed to maximize the best outcomes for you. And I think if we can get to that,

then I would say we've probably achieved as a as a charity what we set out to achieve, which is for

everyone to be diagnosed early. And when they are diagnosed to live and live well. Barbara Wilson,

who runs the organization Working with Cancer, wants to see treatments that are milder than the

current harsh chemotherapy and that focus more on the patient's quality of life. Well, ideally,

they'd be a cure. I don't think cancer will ever disappear. I think it'll always be part of our

lives. But I think what would be make a difference is to have treatments that aren't so invasive and

difficult to live with. So I think the issue is how can 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 all patients to have access to exercise. I would like

to see physical activity and support and referral to be routinely offered as part of standard

standard follow up care for women who've had breast cancer and breast cancer treatment. We

hope, I hope that our project called Purex can provide a feasible and acceptable model to be able

to do that. Fran Whitfield is a cancer exercise and rehab specialist who was diagnosed with

secondary breast cancer when she was just 25. Like Dr. Sam, Fran wants all patients to feel empowered

to keep moving their bodies, whatever the stage of their cancer. If one thing could change in terms of

breast cancer diagnosis, treatment and beyond in the next few years, what would you like to happen?

When you have that diagnosis and you receive that as part of your information that you get, whether

that be from the team or the leaflets that you get and things like that, you have access to an

exercise specialist. You have access to your nursing team, you're on a oncologist, you have

access to the dieticians in the hospital, physiotherapists, but we don't have enough

access to a cancer exercise and rehabilitation specialist. That's the number one thing that I

really want everyone to be able to have access to or pointed in the right direction because people

don't know that we exist and people don't know that actually exercise is so important for your

treatment and you can still trust your body when you're going through treatment to be able to be

able to do these things and not feel weak and not feel scared to move in certain ways. When it comes

to mental health, Dr Naz Derichan from the Brick Centre wants patients to be given the tools to cope

emotionally with breast cancer. I would like to see that there are more provisions for

psycheducational support and more effective programs for improving mental health,

sustainable solutions for women so that they are not buying time to survive, but they're actually

thriving. They believe that they can go out there and do it. So the psychological aspects of breast

cancer and empowering women, I want to see happening in a strategic way, not like in a dotted

way. Well, we've got this counseling program there and then so and so has developed this. We want

women to be independent as well. We don't want them to be reliant on constant counseling and constant

psychological treatments. We want to give them the tools that they can independently apply. I

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 Campbell is a podcaster and motivational speaker with

secondary breast cancer. She wants to see more stories of people surviving and thriving long

term and to share the message that we can all be limitless. If you could see one change in terms of

the diagnosis, treatment or recording of breast cancer in the coming years, what would it be? Gosh,

I mean, obviously it goes without saying that all treatments and all advances available to all. I

mean, that's just, you know, that's kind of so obvious. I think more examples of people living in

the long term, you know, more of the positive stories, not just within our community, but in the

media and kind of, you know, people being represented, you know, as living with what is more

and more a chronic disease for many rather than a terminal one. You know, that would be a wonderful

change. And I think a more deeply rooted belief that life can still continue and be big and full of

possibility and expansion despite what on paper can seem grim. Dr Lizzo Reardon, a breast cancer

surgeon who was diagnosed with breast cancer herself, wants more funding and research to be put

into extending the lives of secondary breast cancer 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 and metastatic cancer patients. We need more quick

access to drugs and everyone should be in a trial just to try and help. I think there's too much on

prevention and the biggest risk factors of breast cancer being a woman and getting older. And I think

we need more money to help all of us stay alive for as long as possible. Kreena and Toril run the South

Asian supernovas supporting women within the South Asian community. Kreena wants to see people

from all backgrounds in breast cancer messaging while Toril wants marginalised groups to be

included in data and research. So we need to collect more data and we need more research both in

primary and secondary breast cancer but particularly including marginalised 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 the oncology

space overall. Dan Wills works for the organisation that gives charities like Breast

Cancer Now the Green Tick as trusted information providers. He wants all patients to have access to

the right information allowing them to make informed choices about their own health. I think

something that's really important is that patient choice. You've been able to, like you were

saying earlier, you'd like to see it from three people rather than your team at your hospital. I

think that's something that's really important that people can get access to that information and

make a choice that's right for them because like Liz was saying, not everybody is the same. You'll

have some people that are healthy, some people that are interested in their diet, you'll have

others that are like, actually I know I might only be around for another five years but if I had

treatment my lifestyle is going to change and I don'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 urging healthcare professionals to listen. She wants

doctors to respect our wishes when it comes to our own bodies and our own health. If you could change

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 those that want mastectomies that do not want

reconstruction, please, please, please listen to them and listen to their reasons as to why do not

force us to go through the three months counseling enough to prove we're a sound mind to make that

decision. That's degrading, we don't want mental abuse like that, we need to be supported and that is

just my one wish. Paralympic champion Erin Kennedy is a campaigner for breast cancer

awareness and early detection. She wants to encourage patients to have the confidence to ask

for what they need in the medical setting. I think it would be to kind of empower patients to have the

confidence to advocate for themselves, to be able to ask questions without time limits, to explore

the options that are best for them with healthcare professionals that aren't stretched and have the

capacity to listen to them and hopefully act on what they want. That goes all the way through from

early diagnosis through to choice over surgery and things like that. And I think that encouraging

individuals that you can advocate for your own health and knowing that that could be kind of

received well as well. Now for something a little bit different. Hannah Gardner, a secondary

breast cancer patient and self-confessed Spice Girls superfan said she'd like to employ a little

bit of girl power. I'm going to reword the question that we asked at the end of this podcast to

everyone. If you had the power to change one element 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

element of it, so just one thing, can I change its existence? Sure. Yeah, there. Absolutely.

That's what the Spice Girls would do. It doesn't exist. There we are. It's gone. Yeah, I think that

might be the best answer we've had today. Breast cancer now's goals are to stop people dying from

breast cancer, to support people to live well with the disease, to accelerate detection, and to

improve prevention. The charity's vision is that by 2050, everyone diagnosed with breast cancer

will not only live, but live well. As for me, I'd like global pharmaceutical companies and

scientists to put aside profit and rivalry and work together to find a cure for cancer. We did this

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 human face of cancer that we are people with families and

careers and lives and hopes and dreams, then one day, perhaps even in my short lifetime, we will

find a cure. Thank you for listening to the Breast Cancer Now podcast, and stay tuned for season six,

coming soon. If you enjoyed this episode of the Breast Cancer Now podcast, make sure to subscribe

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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.