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

I've just finished our chat with Claire Rowney, the CEO of Breast Cancer Now, and it was a brilliant chat. People don't necessarily realise, and I didn't realise, how much of the money Breast Cancer Now fundraises is put into research to find better treatments, to make those treatments less harsh, and all of those things come together to make sure in the future people with breast cancer not only live longer, but live happier, live better.

And also just on a personal level it was great to know a little bit about her. I think often we look at the CEO of a company or a charity and think that they're this you know high up person who's not approachable but I found Claire really approachable, really down to earth so I think the charity is in fantastic hands. I hope you enjoy it as much as I did.

Claire joined Breast Cancer Now as Chief Executive Officer in 2024. Her incredible career in charities has included time at Macmillan and Cancer Research UK, and she's also worked on well-known fundraising initiatives like Race for Life and Stand Up to Cancer. She also has personal experience of breast cancer. The very same week she took the job at Breast Cancer Now, Claire found out her own sister had been diagnosed with breast cancer. So taking on this role brought on a whole new significance. We'll be getting to know Claire on a personal level and finding out her plans for the charity, as well as learning more about Breast Cancer Now's mission to make sure that by 2050, everyone diagnosed with breast cancer not only lives, but lives well. Claire, welcome to the podcast.

Thank you. Lovely to be here.

So I thought we could start with a few little warm up trivia questions to get to know you as a person. So when you're not running the charity, What might we find you doing?

Well, I always say my husband has loads and loads more hobbies than I do and I'm fairly pedestrian in the way I spend my time. So I love cooking and I was talking to you, wasn't I, before we started recording about the fact that I think I've got a collection of about 500 cookery books over the years. So I love cooking and I like to sort of cook something different almost every day. So that's definitely something. I go to the gym every day. I'm like a bit of a fiend for the endorphins that I get from a good cardio workout. So I tend to do that before I start work each day. And love traveling, you know, I've got two grown up children now. So I feel liberated. I've got lots of time to do things.

What's your signature dish?

Well, I do a nice Thai salmon dish.

Oh, yeah, delicious. Sounds healthy as well.

It's fairly healthy.

I mean, I was going to ask you what your plan B career would be, but I feel like you're going to say cook.

No, it's not; my plan B would be midwife. I absolutely, I mean, I've only got two children of my own, I didn't go wild, but the whole miracle of birth, I think is incredible. And yeah, that's it. I would absolutely have loved to have been a midwife.

Why did you end up in charities rather than becoming a midwife, if I may ask?

Well, I've had a direct route into charities, so I grew up in a family where my granddad owned and ran hotels. So I always loved seeing behind the scenes of how things work. So when I come on something like this, I'm like, ooh, so that's how a podcast is recorded and this is how a studio works and so on. So I grew up sort of going to hotels and knowing how hotels work behind the scenes. And so my route into charity was via events. So I used to organize commercial events, 2,000 people, 10,000 people conventions, came into charity to organise fundraising events and then got bitten by the bug, drank the Kool-Aid and have never left.

Yeah. So why Breast Cancer Now?

Well Breast Cancer Now for me is like the perfect fit for a number of reasons. I've spent a lot of time in cancer charities, so I was at Cancer Research UK for 13 years, and at Macmillan for just over five. So I think why I was so drawn to Breast Cancer Now was it brings research and support together and that's quite rare in charities, but also there's a really, really clear focus at Breast Cancer Now and I love that. That's one of the things that's been brilliant has been to sort of know what we're in the world to do and everyone I meet at Breast Cancer Now, when I started, just sort of knew what we were here to do and there was no discussion about it. And like the level of focus that you get in an organisation that's sort of single focus like Breast Cancer Now is really, really cool.

Amazing. Well, we'll talk about that focus and what you're doing at Breast Cancer Now. But before that, I wanted to ask you a little bit more on the personal side. So you were in the final stages of accepting your new role as CEO of Breast Cancer Now when your sister got in touch to tell you that she'd been diagnosed with breast cancer. Can you tell us a bit about that?

Yeah. So it's interesting, when you're going for interviews for a job like the CEO of Breast Cancer Now, naturally you get asked during that process, what's your motivation for doing the role? My grandma died of breast cancer when we were very young. So when I was sort of five or six, and that was at a time when people didn't really talk about breast cancer. If they did know the signs and symptoms, they didn't necessarily present to their GP and so on. So by the time she was diagnosed, it was quite progressed. She died quite quickly. So that was my story. That was my personal connection. And Katie, my youngest sister, so I've got two sisters, I've got a twin sister and a younger sister. You know, she doesn't live in London. I speak to her maybe once or twice a week. I hadn't picked up anything unusual in, you know, anything. And then she said, can I talk, can I FaceTime you? This was just before I had— just after I'd had my final interview. Can I FaceTime you? There's something I want to talk to you about. And I want to talk to you with Fiona, who's my twin sister. So Fiona and I immediately picked up the phone and said, well, what do think it is? And God, you know, so she called from Waitrose car park, it was really weird and I suddenly thought, oh God, I don't think she's very well. Anyway, to cut to the chase, she told us that she had been diagnosed with breast cancer and she'd known for about a week but hadn't wanted to talk about it because she hadn't wanted to tell me because she hadn't wanted me to have to go into an interview and sort of start talking about it when it was all so fresh.

Did she know you were interviewing for this particular job?

Yeah, yeah, yeah, yeah, she did. So it was just a really strange coincidence. There have been lots of silver linings to it. We've spent some wonderful quality time together during the last year. So I had to wait six months to start because I was still at Macmillan. I still had lots of work to do there. And that's when Katie did the majority of her treatment, so it gave me the most extraordinary induction into the details of breast cancer diagnosis, the beginning of treatment, surgery, chemotherapy, radiotherapy, and I saw it sort of really up close and was able to understand it in a way I never had before. So I felt sort of very privileged to have had that education when I arrived here, but yeah, an extraordinary coincidence.

It really is, yeah. Well, I guess the most important question, first of all, is how is she?

She's good. So she's a primary school teacher and her diagnosis was just over a year ago now and she's going back to school in February half term and part time to start with. But she's feeling strong, she's had a lot of treatment, she continues to have a lot of drugs, but signs are very good. No sign of cancer on her last mammogram. So we're feeling optimistic.

Great news, long may that continue.

Absolutely.

And how has having that personal experience of someone very, very close to you being diagnosed with breast cancer and having treatment affected the way you have approached running this charity in the very beginnings of joining the charity?

I think I used to run strategy at Macmillan amongst other things and so got very used to and really had already seen a lot of importance in hearing the voices of lived experience through like building what we're going to do next. But I think having that... someone phone me up and just say, oh, I've just done this Breast Cancer Now thing, or I've just read this on the website, or I've got this question, has really helped me to understand at Breast Cancer Now what we might do differently from a patient perspective or from a person living with breast cancer perspective, but also where the gaps are and the questions that people ask that we don't necessarily answer in the right way. I must say at Breast Cancer Now, I think we're already really good at involving people with lived experience in our work. And I've loved that part of Breast Cancer Now. It's brilliant. At Breast Cancer Now, we call them, I love this, our Voices, our cancer Voices, which I think is just a nice collective description of people. But for people that do a lot for us, they call themselves our Louder Voices, which I just think is fab. Our Voices are kind of everywhere at Breast Cancer Now and that's definitely something that I love, but having Katie go through it and hearing her experience has really made me understand even more how important that is.

You need to find a name for Katie. Could she be your, so you've got your Voices, your Louder Voices. Maybe she could be your Close Voice or something.

Yeah, my little Close Voice in my ear. My Constant Voice.

Your Constant Voice, yeah.

Let's talk about your role at Breast Cancer Now. As CEO, you are responsible for everything that happens at the charity, but what does that mean on a day-to-day basis? What does your day look like?

That's a great question. And I suppose the easy answer is every day is different. But I actually was talking about this to some new staff who we were inducting last week. And it had been a very funny day because I was seeing them at lunchtime and that morning I was doing some filming. So Azstar are one of our long-term partners. We're just hitting 25 years of having their support and unbelievably they've raised nearly 100 million pounds for us. I know it's incredible. So they were down doing some filming and various staff members were being recorded and I was one of them. So I was talking about why the partnership was important and so on. And they're bringing back the, I can't remember what the words are, the doop doop.

Yeah, yeah. I talking about this with my husband the other day. We were telling my eldest stepdaughter, no, my middle stepdaughter about the fact that Asda used to have a bum slap, if we can call it that, at end of their adverts. And she was like, what? That sounds a bit weird. And then two days later we see the advert and he's like, oh my God, it's back.

Exactly, it's back. So they said, so I'd been asked to wear pink and obviously, and today I'm being filmed from the waist up and I hadn't thought too much about what I was wearing on my bottom, but I happened to be wearing shorts with tights. Anyway, they said, oh, would you mind doing, you know, and I thought, oh, God. First of all, I would not have worn shorts if I'd known this was gonna happen. But secondly, then I was like, so Harpal Kumar was the CEO of Cancer Research UK when I was there. And he's sort of one of those people that when I'm thinking, should I be doing this? What should I do? I think, what would Harpal do? And I thought Harpal wouldn't. But I did it anyway. The answer to what does my day look like and what's my every day is sometimes it's doing things like slapping my bum for Asda.

Doo doo doo doo doo, slap slap.

Exactly.

Just in case anyone doesn't know what we were talking about there.

But other times it's like yesterday I spent the whole morning with about 40 colleagues talking about strategy and thinking about if we're in the world to do what we've talked about already which is to you know help people live better with a breast cancer diagnosis and to live. What should we be doing? Where do we really need to sort of focus down? And I can be meeting donors. So we have lots and lots of amazing supporters. So I can be out meeting them. I can be at an event with Wes Streeting. So it's really varied. I mean, that's the fun part of it. And like for me, the thing that gives me my energy is meeting so many different people who in so many ways either have the potential to really help us or are already helping us or, you know, can contribute something to the way I think about the organisation or to what we do. So it's really genuinely the best job I've ever had.

And Wes Streeting is the health secretary for anyone who doesn't know. So you're speaking to top people in government, decision makers.

So you have to be, you know, have to be really sort of well prepared, but also I think just very sort of human in terms of, certainly as a new CEO, I know I don't know everything and that's actually sort of very humbling but also very liberating because you don't arrive at every meeting thinking I know what to do here, I know how it's going to go and I know what I should be doing. So that's another kind of nice part of my work at the moment is just learning such a lot. But yeah, sometimes very high level decision makers and then sometimes I can be you know in amongst three or four people who've had a breast cancer diagnosis and sitting alongside them while they're doing sort of peer-to-peer learning and things. So it's incredibly varied.

Yeah, fantastic. Sounds like a great job.

It is a great job.

Breast Cancer Now has a very ambitious vision to make sure that by 2050, everyone diagnosed not only lives, but lives well. I'd like to explore that statement a little bit with you. What does it really mean? What are we actually aiming for with that?

Well, I always think of this vision in two parts. So the helping people with breast cancer diagnosis to live is really about breakthroughs in the lab. So how we can find better treatments, more effective treatments. And it can also mean making sure that people are able to access the right treatments at the right time for their particular diagnosis. And because we know that outcomes are much better for people if they get the right treatment in the right way. Some of it is about early detection, it's about attending screening, it's about understanding risk of cancer because different women will have different risk factors. So that's the live part. And then the live well part is all about, you know, the way I think about it is I would like us to get to a point where anybody with a breast cancer diagnosis lives the limitless sort of life that they had before, so aren't limited by their diagnosis, aren't limited by the side effects of their treatment. Don't feel that things are out of their reach because of their breast cancer diagnosis, so that it becomes something, yep, that maybe they're going to live with for the rest of their life, but it isn't the thing that's going to end their life, that they'll perhaps die with breast cancer rather than as a result of breast cancer. So for me, that's what living well means, and that's what I'm aiming for for women with abreast cancer diagnosis.

I mean, that's only 25 years away and that is incredibly ambitious. And I know we're not talking about finding a cure by 2050, although I'm sure we would all love that. But is it achievable and how are you working towards it?

I think it is achievable. I think we can see across the world that there are better outcomes for people with breast cancer than there are in the UK. So there are some proven ways of making things better for women with breast cancer, women and men with breast cancer that we're not doing yet. But also you only need to look back 25 years and see what a breast cancer diagnosis looked like then compared to now to know that an awful lot is possible and an awful lot of progress is possible. So tackling it is complicated because there are lots of different parts of a cancer diagnosis and cancer treatment that we need to look at. But if you think about risk factors to start with, so, you know, DNA and genome testing and so on has come on so much, even in the last 10 years, that it's not impossible to believe that somebody when they're born would know what their risk factors, you know, what their risk looked like. That might then end up meaning that for certain groups, screening becomes more increased so that a cancer is caught earlier, or it might mean that preventative drugs can be delivered, which will mean her cancer won't develop at all. And then treatments will get kinder, they'll become more personalised and therefore more effective, and so outcomes will be a lot better. And I think right the way across the cancer research field, breakthroughs are happening all the time, which means that treatments can be both more effective and be easier to sort of take because, you know, certainly one of the things that I've learned through Katie having her diagnosis and treatment is... chemotherapy is brutal, radiotherapy can be really brutal, the drugs are really tough. There are some great outcomes for people in terms of mortality, but it's still a really, really tough set of treatments that you have to go through. There's a lot to do.

Yeah, there's a huge amount. And you've just actually sent my head spinning off in a different direction when you started talking about finding what people are genetically predisposed to. And so for example, I was diagnosed in 2012, but it wasn't until 2022 that they were able to confirm that I had a genetic mutation because in 2012, they weren't able to test for that particular genetic mutation. So I've got real life experience of seeing what's changed, which is incredible. But what you made me think then was that in 2050, if someone is born with that genetic mutation, does their parent then know that from birth and is there then a drug or something that maybe they're given at a certain age that helps prevent breast cancer or do they make lifestyle changes? So there's so much to think about, isn't there?

There is, and that's why research continues to be so important and that's sort of part of the magic of Breast Cancer Now is we can help people today and support them, but at the same time, we've got these incredible scientists thinking about all of these questions and chasing the answers. And of course, yeah, as you say, 10 years ago, lots of genetic mutations weren't known about, weren't understood and weren't tested for, and that's still true. So there'll be someone who's diagnosed today who in 10 years might learn that they've got a genetic mutation that isn't understood or known about today.

What are the biggest obstacles in the way of that vision?

I think that we have a fair wind actually. Money is always not a problem, but something that we could do more of. In any charity that I've worked in, there's always more work that you could do. Never ever have I worked in a charity where we've been able to say, I think we've got all the money that we need to make the breakthroughs that we want to and to support the people that we want to. So fundraising takes up quite a lot of my time because actually the more funds that we can raise, the more able we are to invest in long-term research, the more able we are to give people really high impact support like right now. So that's definitely always something that's on my mind, but also to make what we deliver more sustainable financially. So how can we deliver really high impact, high volumes of support for people in a way that's genuinely scalable and might become self-sustaining over time? So that's an obstacle, I suppose, but also something I think we can solve, but we just need to sometimes think about charities in a little bit of a different way to the way we might do traditionally.

I think, you know, one of the really nice things about working for a breast cancer charity is often we lead the way for other cancer breakthroughs and for other ways that cancers are treated. So you'll see over time if you look back at the history of breast cancer research often some of the breakthroughs that have happened in breast cancer then go on to support other breakthroughs for other cancer types. So a bit of a barrier sometimes for a breast cancer charity is people thinking we're only concerned about breast cancer. Breast cancer is what we're here to worry about, but what we know is if you get something wrong in breast cancer, it's likely to support other cancers. Secondary breast cancer is a really good example of that. So why cancers spread, why cancers remain dormant and then kind of come back to life and start moving to other parts of the body won't just help breast cancer charities and breast cancer patients, it will help others and likewise with sort of support. So I think there's a lot of momentum behind breast cancer. I think we have a lot of people, as you are very well aware, affected by breast cancer and we know that that's a growing population in the UK. So the obstacle is how quickly can we go? How many people can we help? How many breakthroughs can we have? And we probably just need to think about some of what we do a little bit differently in order to really accelerate our progress towards 2050.

To what extent do you work with the other cancer charities and do you and all the other cancer charity CEOs ever sit in a room and say, you know, this is what we can do together?

Yes, yes. So, I mean, this is like, for me, one of the great joys of coming from Cancer Research UK and Macmillan is, I've got lots of friends there. So actually collaborating and having these like really human conversations is really easy for me because people know who I am, what I'm about, what it is that I want to achieve. One of the things that I think should give everybody hope is that I haven't met anybody who works in a senior role in a breast cancer charity, in a cancer charity that doesn't want us all to win. So there is a real sense of shared ownership of the goal across all cancer types. And we all, think, know and appreciate the unique things that we can offer towards that sort of collective goal of stopping cancer in its tracks and helping people to live well with a cancer diagnosis. And we know the bit that we do at Breast Cancer Now, but also it's really lovely to see so many others doing their bit and that collectively we're making really, really good progress.

Do you have any personal goals for the charity?

I do. Some of them are around the impact we're able to have and how quickly we can grow and therefore have greater impact in the future. So I've got some quite long-term goals which are about just our ability and reach to help people across the UK. My ambition for everybody in the UK that has a breast cancer diagnosis is that they can expect and should expect amazing support, timely treatment, the most effective treatment, and to be able to access some of the most innovative drugs. And that isn't true at the moment in the UK. So I definitely have that ambition for women and men with breast cancer and therefore for breast cancer now to be like right at the heart of that. I'm right at the heart of that progress. So that I suppose over-archingly is my big ambition. And then I have lots of small ambitions that are about other things that I would love us to be doing.

Yeah, lots to do. So in terms of the overall landscape for breast cancer in the UK, we know that more and more people are being diagnosed each year.

Yeah.

Do we know why that is?

We know some of the reasons. So some of the reasons are about an aging population. So people do tend to get diagnosed with breast cancer later in life. And as the population ages, statistically, you would expect to see more people diagnosed. Earlier diagnosis, whilst it isn't where we want it to be, is getting better. So we are seeing more people diagnosed at an earlier stage, which is a really positive thing. But of course, it just means that there are more people being diagnosed. And then lifestyle changes, you know, over time, certainly generationally are really significant as well. Depending on the statistics that you read, somewhere between about 23 and 30% of breast cancer cases can be avoided through lifestyle changes. And lifestyles aren't necessarily getting healthier or better as time passes. So. you know, cutting down on alcohol, not being obese, staying active are three really important things you can do to avoid breast cancer.

We're also seeing more and more diagnoses in younger women, women under the age of 40 or 35. Why is that happening? Because that's not due to an aging population, and it's often not women who are obese or smoking, for example.

Yeah, yeah. And the answer to that is it's not well understood. So part of the work that we do and are doing is understanding... so it's not just sort of lab research that we do. We also do research into things like this. So why is it that younger women are being diagnosed? What are the factors that are playing into that? Is occurrence actually higher or is it just there are more diagnoses at this particular point in a person's life? So the quick and simple answer is it's unclear at the moment but we're definitely seeing it and we're seeking to understand it.

We also know that women from some ethnic minority groups are more likely to be diagnosed at later stage and have poorer outcomes. Why is that and what is the charity doing to help with that?

Yeah, that's true and that's true in breast cancer and it's true in lots of other cancers too. Some of that is about cultural norms. So we talked a little while ago about screening and about why people might not attend screening and it's exactly the same for why people might not attend a doctor and if they don't think there's anything wrong with them, they don't go to a doctor. So some of that will be about screening uptake. Some of it, unfortunately, is about the way some particular people with protected characteristics are treated within the system. So we know, for example, that a black woman presenting with a lump might need to try more often to be referred than a person who presents like you or I. So there are definitely some behaviours and cultures within the system that we need to kind of seek to change. And some are, there are particular types of cancers that are more prevalent in particular people with particular ethnic characteristics. So there are a mixture of things. So we're doing some work on screening and we're doing some work on accessing our information. So we do lots of different languages now and actually our helpline and so on is now available in, well actually almost any language. So we have this language link service which is really good. So people who speak any language at all should be able to call us and get support in their own language. We're also working within the system to understand where the discrepancies are and helping to address them It's, you know, what I would say in these cases is it's a big shift and it's lots of people that need to change in order to kind of close that gap. But it's something we feel very strongly about at Breast Cancer Now. We're also doing things like making sure that when we do our clinical trials, there is proper diversity in terms of the people that are participating in clinical trials, because that's another place where we don't see proper representation and that creates, it's really problematic.

Yeah, we've got some resources on this podcast as well. So last year we did an interview with the South Asian Supernovas, which is a group that helps support women in the South Asian community where it can be seen as taboo to talk about breast cancer, to say that you found a lump, to go to your GP and get checked out. And then it's a sort of... vicious circle. We'll put those links in the show notes and some other episodes that we've done as well. So hopefully help some people with that. You spent a huge part of your career at Cancer Research UK and I know research is particularly important to you. What a lot of people don't realize is that Breast Cancer Now, because it's not in the name, it's not Breast Cancer Research Now, the Breast Cancer Now does do a huge amount of research. Can you summarise what you're actually doing in terms of research at the charity?

Yeah. So I am very passionate about research because I think it's one of the sort of weapons we have to make really, really big strides about stopping people from dying of breast cancer. So it's really important. We do really, really varied research at Breast Cancer Now. So we do some basic research about why breast cancer happens, you know, like a very sort of basic level, what's breast cancer all about? How does it start? How does it spread, etc, etc? And then all the way to what is termed translational research, which is the research that happens in the lab. It might happen in the lab in the morning and a doctor then might take it to clinic in the afternoon. So at that particular point where we're really getting it to patients. And that can be about how a particular drug is used. It might be about length of chemotherapy sessions. So lots of research at that end and then sort of everything in the middle. And then we do research about problems or gaps that we see. So for example, why younger women? We're finding an increase in younger women being diagnosed with breast cancer and all of those sorts of things. I think more recently we've become very interested in dormancies. So this idea that you can have a primary diagnosis of breast cancer, you can go through your treatment, it can appear that there's no evidence of breast cancer. But actually it does remain in your body, it stays dormant for a period of time and then something essentially wakes it up and brings it back to life and it will then start its journey again and understanding why that happens because what we do know is with a primary diagnosis, your survival rates are really high now because of the brilliant treatments that have been developed. But with a diagnosis that is secondary, it's more problematic and there are fewer treatment paths. Understanding, if we can understand dormancy and stop that, you know, those dormant cells being switched on, we can essentially stop secondary breast cancer. So it's really, really interesting, really, really important research. And the other thing that I would just add about the research that we do is we have some really amazing research that's very long term. So we're looking and have done for the last 25 years is a cohort of over 100,000 women who – this was pre-diagnosis – so we basically looked at 100,000 women and we have studied them for 25 years and some of them have developed breast cancer and we're starting to understand why that is because we've studied them for all of this time so we know what's different about them and we plan to study them for another 25 years. So that's a really long term project that should really, really help us understand sort of the life cycle of breast cancer. And then we have this thing called a biobank, which is we collect tissues, so like tumour, blood, all sorts of tissues from people who've had a breast cancer diagnosis. And that enables thousands and thousands and thousands of other research projects to happen and breakthroughs to be made. So we're also sort of this catalyst for amazing research, not just in the UK, but across the world. So, yeah, it's really, really broad.

One of the areas where Breast Cancer Now does some brilliant work is secondary breast cancer, which is something that I'm obviously very passionate about because I live with secondary breast cancer. And one of the things that the charity has been campaigning for over the last few years is a comprehensive review of the people in the UK living with breast cancer and the number of diagnoses because that was not previously understood. And those people are not being as well supported, they're not being as well accounted for as people with primary breast cancer. What's being done in that area and what still needs to be done for people with secondary breast cancer?

Well the answer to that is there is a lot that needs to be done. So starting at the very beginning and the understanding actually even how many people there are with a secondary breast cancer diagnosis in the UK is really problematic because the data is not well kept, it's not well maintained, it's not well recorded. It is now mandatory to record a secondary breast cancer diagnosis. This is unbelievable. This will sound completely unbelievable, but there isn't a proper drop down on the screen within the NHS that people have to record this data. And so it's being recorded in all sorts of different ways and it's not easy to record it. So there are some things just within the infrastructure of the NHS that needs to change in order that this is properly recorded. People are doing their best. I mean, they definitely are, but it's not giving us a comprehensive view of secondary diagnosis. So there's that. Then when you have a secondary diagnosis, the pathway for treatment and what you can expect in terms of who you will see, when you will see them, frequency of appointments and so on, is not at all uniform. So there's real variation depending on where you get your diagnosis. It's not brilliantly understood, which is quite extraordinary.

The disease itself, you mean?

Yeah, so the signs and symptoms aren't well understood, certainly by GPs. Often at the end of a primary breast cancer diagnosis, you know, and I talk to clinicians about this quite a lot, they want to be able to say, well done, you've reached the end of your treatment, this is fantastic, and not then immediately start talking about recurrence. And there is what I think is a really great thing within the system at the end of primary breast cancer, which is this idea that the door is always left open for you. So if you are worried, if you see any signs and symptoms or anything that concerns you, you can come back. But only really the most empowered patients who are most happy to self-advocate are the ones that use that. So whilst the door is open, not very many people come back through it, which means that a secondary breast cancer diagnosis can often come quite late when the disease is quite spread. So there's that. Then... we've talked about treatment pathways, there aren't as many different drug regimes for secondary breast cancers as there are for primary. Some of that's about research, some of that's about just the volume of people. So we were talking about pharmaceuticals and we were talking about the fact that they're in it for profit and that's their business model. The fewer people that get a particular disease, the less money they will put into developing drugs for that cohort of people. It's one of the reasons that, you know, there were very few treatments for very niche cancers, you know. And if you think about 60,000 or so people in the UK with a secondary diagnosis versus lots of other diseases, it's actually quite a small number of people. So there are lots of reasons why it is a secondary breast cancer diagnosis is tougher before you even get into the fact that by then it's spread and we know that we will never kind of get you clear again. So the good news from a breast cancer patient perspective is we really see this problem, we really understand the problem and we're really concerned about the problem. So if you go back to our vision, which is by 2050 everyone will live, we've got to understand dormancy and we've got to understand secondary breast cancer and make sure that the deal for secondary breast cancer patients is better in order that we make a really big hole in that vision. So it's not an easy diagnosis, I know, and I think you're brilliant to kind of face into it every day. There are so many people at this point in their diagnosis who would say, I don't want to spend a lot of time thinking and talking about it, you, when others will step away, you step forward and you're really facing into it, which is fantastic because it means lots of other people are learning both from you and from the conversations that you have. But it's something that's very much on my mind as being a really important part of the next five-year strategy that we're building.

Thank you. I think for me, it's also a control thing because I feel like the more I can learn about it, the more I can do. And we have seen, you know, we've had patients like Hannah on this podcast last year who because she knew so much about clinical trials and she knew she could have a clinical trial, she therefore got a clinical trial. And I do sometimes feel like as a patient, especially as a secondary breast cancer patient, you have to advocate for yourself. And so the only way for me to be able to do that is to know, you know, to read about it and to find out about it and speak to other patients and get advice and work with breast cancer now to see what can be done.

Information is power. I think your point about clinical trials is really important as well. I've said this for probably 20 years now. Outcomes for people on clinical trials tend to be better than those not on clinical trials because you're tending, by the time you're at a clinical trial stage, treatments will generally be at least as good as the standard treatment but probably better. You'll be having more appointments and you'll tend to be seeing real specialists in your particular cancer type. So I say to anyone, if you can get on a clinical trial, do it.

Yeah, yeah, fantastic. I haven't done one yet, but hopefully someday one will be available to me. Another of the things that I've noticed when we talk about secondary breast cancer is that so many people have no idea what that is. They sometimes think secondary breast cancer is a second breast cancer. And actually I met someone randomly in the gym the other night. who was a retired GP and I said, I have secondary breast cancer. And he said, what? And I said, he said, hang on, what do you mean? And I said, I had to say stage four. And then I had to say metastatic and he went, no. And he couldn't believe it. I think because I look young. But what I have noticed is people don't know what it is. He did know what it was, but he couldn't believe it. But a lot of people just don't know what it is. And in the Enhertu campaigning last year, some of the breast cancer community like Sophie Blake, for example, who is one of the campaigners in the Enhurtu campaign, had to use the word 'terminal' to get the media to understand and to get the public to understand the severity of what she is talking about with secondary breast cancer, because the word 'terminal' was the only thing that could get the people to understand, but also drove the news to make headlines out of it because they understood the severity of it. Breast Cancer Now has elected to use the term secondary breast cancer rather than any of those alternative terms of which there are many. Why that particular term? What is the plan, I guess, to get that more understood?

Great question. And the truth is, I actually don't know the origin story of why we use secondary breast cancer. My confident assumption is our cancer Voices, so people with lived experience, will have been involved in that decision-making process and that will be where we ended up. I think you're right, it's not well understood. Metastatic breast cancer is also not well understood. And the more specific you get in any way when you talk about breast cancer, the less it's understood is what I would say. So we've definitely got an education job to do. And there's lots of problematic language in cancer anyway, things like remission, things like cure, things like secondary. I was talking to somebody at the Brain Tumour Charity yesterday and I was talking to her about secondary breast cancer and she said, well of course we call it metastatic brain cancer. And I thought, God, I actually was thinking about that data collection point and I was thinking, well I wonder if some doctors would classify that as metastatic brain and then are we getting it in our data? And then I also started to go down this hole of, well, I wonder if you're seen in a breast cancer clinic or you're seen in a brain cancer clinic or whether you're seen in both. And how all of that works in the system isn't uniform. So again, there's this variation. But to answer your question about what will we do, we will do more from a public awareness perspective, certainly. One of the very interesting things that we've been talking, well, I think it's very interesting, things that we've been talking about: when we've been thinking about our strategy is where we put our efforts in terms of public health work. And although we know there are lifestyle changes that could stop people developing primary breast cancer, the job of a charity of our size to change lifestyle behaviors of the whole UK population is quite limited. But what we can do at the end of a primary breast cancer diagnosis is have a captive audience who we talk to about lifestyle changes that will limit chances of recurrence. And in doing that, I think we can start to educate primary, sort of post-primary breast cancer patients about secondary. And I think that's the most, if we were prioritising who we wanted to understand about secondary breast cancer, however we describe it in the future, that is the cohort of people that I would most want to understand it because they're the ones it will most impact, having a really good understanding of it. GPs is a really interesting one. So on average, a GP will probably only see eight cancer patients a year. A), because people aren't diagnosed early enough, so they're being diagnosed in A&E and so on. But actually, because of the number of GPs and the number of cancer cases across the UK – this isn't just breast cancer, this is any sort of cancer – actually, it's really quite limited the number of people that actually have cancer that go into their surgeries. So then we need to...

Before diagnosis, do you mean or do mean people with...

No, before diagnosis.

Right.

So presenting to their GP with things that will get them referred and then we'll get them a positive diagnosis. There are lots of more people that they'll refer, but of those referrals that will actually turn out to have cancer. So GPs... I have some sympathy for GPs in that there's an awful lot that they're dealing with and cancer actually is quite a small part of what they're dealing with and then breast cancer is a smaller part and then secondary breast cancer is an even smaller part. But given that signs and symptoms aren't actually very different to general signs and symptoms of a cancer diagnosis, and we would hope from a record-keeping perspective that it's clear that a primary breast cancer diagnosis has happened, that could definitely be improved, that pathway and referral and kind of speedier referral. But again, like so many of the things that I've talked to you about today, there were lots of different things we need to do in order to solve a problem.

Yeah. From my point of view, in terms of that awareness raising about what secondary breast cancer is, it's about, yes, it's about teaching people about the signs and symptoms of secondary breast cancer to primary patients is incredibly important and it's incredibly well done. I think it's a fantastic campaign. But for me, it's about getting people in the wider public to understand what it is and to understand the difference between that and terminal because sometimes terminal, terminal I think used to be the word for secondary breast cancer a long, long time ago because when you were diagnosed with a secondary breast cancer, you wouldn't have long before you died because the treatments weren't there because research has come on so much. So now we can't call it terminal because you're not necessarily immediately dying. You might, like me, live for years. And so what I'm trying to teach people is that you can live with secondary breast cancer and you can have a good life and you can work and you can exercise and you can do all of those things. So it's for me educating employers about the fact that, yeah, I am here and colleagues and people like that, that I am here and I do have secondary breast cancer, but at the moment I'm well. And that also ties in with your 2050 goal of people with any kind of breast cancer, not only living, but living well. So it's a whole, there's so many different areas that go into this whole question of terminology and what it all means and raising awareness.

Yeah, and I think you're really right about it. And I think we've definitely got a role to play, but people believe it when they see people like you. So, you I can say, and I often do say, people with secondary breast cancer are vibrant women who contribute, and men who contribute to society, who are doing jobs, who are raising children, who are amazing citizens of the world. And people say, oh, that sounds great. But then they see someone like you, and they're like, oh, that's what it actually means. And so we've, for sure we've got a role to play, but actually, I think people like you advocating for you know, a life with secondary breast cancer, but also the more people who are out there living longer because they are a growing population, people would experience it firsthand and will really believe it.

And people like me can obviously only live due to charities like yours, you know, all goes in circles.

In five years time, what's the one thing you'll feel proudest to have achieved? Making change for people with a breast cancer diagnosis and that means more breakthroughs. It means... I'd really love to catalyse breast cancer research more in the UK. So find new ways of funding breast cancer research probably in collaboration with others to make sure that we've got more stuff happening because there are loads of ideas that we can't chase at the moment. And being there for more people with a breast cancer diagnosis and helping them understand we're there for them. So I think at the moment lots of people think Breast Cancer Now is for them, but some people think we're not for them. And so doing more to reach more people, particularly those people that might really benefit from our support, I think would be two things.

If anyone listening would like to help you go towards that goal by doing some fundraising, what sorts of things can they do and how can they get involved?

Great question. So, there are lots of events that people can participate in. So all sorts of things like we have an Afternoon Tea, we have a wear it pink campaign. So there are lots of campaigns that people can do collectively at home. We are part of lots of events like London Marathon, Great North Run, etc. We've just had the brilliant news, it was revealed this week, so February, 2025, that Chris Hoy's... Bike Ride up in Scotland in September...

Tour de Four.

Tour de Four. We're one of five beneficiary charities for that. So you could definitely participate if you fancy a 65-kilometre bike ride and something like that. You can fundraise any way you like. You can do a pub quiz. You can, you know, do a bake-off at work or you can donate on a regular basis. One of the things that I say to people is the lowest effort way to donate to us is to just set up a monthly direct debit. It doesn't sound very sexy, but for us, it's so lovely to know without having to sort of chase around that we've got that money coming in regularly. So it's a really powerful way to give. And sometimes people can't afford to give right now. That's also absolutely fine. But when you write a will, you're able to leave donations in charity and doing that is another really important income stream for us. So there are loads of ways. What I would say is we're so grateful. We rely 100% on the UK public, so we don't get any government funding. So everything we do is because people go out and do do fundraising for us and we're incredibly grateful.

Speaking of the Chris Hoy Tour de Four event, so Chris Hoy is the Olympic medal-winning cyclist who last year announced that he is living with stage four prostate cancer and so he's organised this new event. I don't know if it's going to be annual or if it's just a one-off, but it's supporting charities like Prostate Cancer UK, Maggie's, and Breast Cancer Now is one of those charities. What does it mean to you to have that kind of support from someone who is living with prostate cancer, not breast cancer?

I think Chris has done a really amazing thing in raising the profile of metastatic disease, so disease that spread from any part of a body and I think he's just started a new conversation and I think that's really important for all of us. As a charity who's benefiting, well it's fantastic because it means we're up there, people are thinking about us as being one of the important contributors to ending the spread of cancer and we are, so I'm glad that we've been recognised as that. And also an organisation that can really get behind and amplify an event like that as well. We have– you've talked a lot about our campaigning team who are fantastic and really, really busy. We have a really awesome fundraising team and they will really kind of grip this and run with it. And I think the plan is that it is for more than one year. So we're excited about being long-term partners.

Yeah. I'm going to sign up. I'm going to try and do it.

Are you? Good, great.

It's in September.

It is September the 7th, Glasgow. I'll be there. We can go together. And you can actually do different distances. You don't have to do 65.

Yes. So he has a distance for people with secondary breast cancer, which I think is like a mile or something. It's very, very achievable.

I'd like to finish with the question we ask everyone on this podcast. And it's an honor to ask you, the CEO of Breast Cancer Now, because you are part of this vision. Breast Cancer Now's vision is that by 2050, everyone diagnosed with breast cancer will not only live, but be supported to live well. What does it mean to you, Claire, to live well?

Well, living well for me personally means being sort of free and having free choice and liberated. You know, I talked a little bit about that. So it means being able to choose to do what I want to do when I want to do it in the way that I want to. And that is my dream for everybody with a breast cancer diagnosis as well. That kind of idea that you live an unlimited life and you can make your choices, and a breast cancer diagnosis isn't the thing that's going to hold you back from it. So yeah, that's living well for me.

Let's hope that comes true.

Yes, absolutely.

Thank you so much, Claire. It's been an absolute pleasure to have you on the podcast.

Thanks for having me.

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