One of the things that I realised when I was being treated myself was empowerment is feeling confident enough to say, "Hold on, I want to stop this train and I want I've got some questions." Or, "Hold on, I don't think I'm happy with that decision." Welcome to the Breast Cancer Now podcast, providing support and information to anyone affected by breast cancer.

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

Today's guest is Claire Rowney, the CEO of Breast Cancer Now, which has just revealed some exciting new plans to help reach its goal. That goal is to make sure that by 2050, everyone diagnosed with breast cancer not only lives, but lives well. It's an ambitious mission that means if you're diagnosed with breast cancer, you'll have better care, better treatment, and a better outlook for the future. It also means people will be diagnosed with breast cancer sooner, meaning better prospects for successful treatment, and that those diagnosed with metastatic or secondary breast cancer will have an increased chance of survival. Claire is here to talk to us about how the charity plans to achieve those brilliant bold targets and how the brand new look will help Breast Cancer Now do this. She'll also talk about her own breast cancer diagnosis and how that has given her an even deeper understanding of the disease.

Claire, welcome to the podcast.

Thank you.

Or should I say welcome back to the podcast because you were with us about a year ago as well.

Yeah. It's lovely to be back. Lovely to see you.

It's lovely to have you. Thank you for making the time because I know you've got lots and lots and lots to do at breast cancer now. So, we'll start with a few warm-up questions. This is the Breast Cancer Now podcast. So, let's get to know and by that I mean let's get to now each other. If money was no object and you could go anywhere in the world, whether on holiday or to live, where would you go right now?

Well, it's pretty misty and murky outside, isn't it? So, I'm definitely going I'm heading for the sun. I think I'd go to San Sebastian. It's not too far, so a nice quick flight. We could be having a lovely lunch or dinner, you know, by in a few hours. There's the sea. There's some sunshine. There's great food. Yeah, I love San Sebastian.

Good choice. Great food. Speaking of which, if you could have the most talented chef cook you a special meal for you and your loved ones, what would you order right now?

Okay. So, I I was lucky enough to go to Mexico City last summer and went to this restaurant called Entramar and it's a fish restaurant and they butterfly a sea bass and they put like a green sauce on one side and a red sauce on the other and served it with tacos and salad and it was delicious. And I went with my children and we all just kind of feasted on it and I would do that again and again.

Amazing. Amazing.

We talk about bucket lists and life goals, but there's nothing quite like cancer to ground us in the here and now. If there's one thing from your life goals list that you could do now, what would it be and why? And cancer, money, all of those things are not part of the equation.

Well, when I was 40, I'm 53 now. When I was 40, I had this kind of vague bucket list. And one of the things I wanted to do was ride pillion on a motorbike. And I and I didn't. Um, but I actually did it a couple of weeks ago because of the cancer diagnosis. So, I've sort of done that. Um, and it was brilliant. I loved it.

And on a much smaller scale, what brings you joy right now?

You know, spending time with loved ones, laughing, having joyful moments. Um, small things, small things bring me joy.

And complete the sentence. I will never...

I will never take my good health for granted. Yes.
Yes. Yes.

Yes. And that is something we're going to be discussing. We're going to talk about your own breast cancer diagnosis. But first, I'd like to ask you about your plans with breast cancer. Now, so the charity has plans to make sure that by 2050, everyone diagnosed with breast cancer lives and lives well. That mission overarches everything you do at the charity. So, could you start by telling us what it actually means?
Does it mean that people who would have died from breast cancer will survive for longer now?

It means it means uh it does mean that it means so the lives um and means yeah we're going to continue to do research which will um accelerate treatments for people and help them live longer and accelerate our route to cures. Um but live well is about people having those joyful moments and enjoying a really high quality of life for as long as possible with a breast cancer diagnosis and all the way through you know for lots of people who have primary breast cancer they'll have their treatment it will end and that will be the last of breast cancer for them um but make sure that you know the way I talk about it sometimes is make sure that breast cancer is a bit of a blip in your life rather than something that will affect the rest of your life

wouldn't it be great if breast cancer could just be a blip. Yeah. And nothing more than that.

You've just revealed a new look for breast cancer now which includes a little makeover for the logo, for example. What's the thinking behind that?

Well, breast cancer now has been around for quite a long time and we have kind of shown up with lots of different colours and with lots of different fonts and things had become not terribly recognisable. you wouldn't always see a breast cancer now um leaflet or advert and be able to instantly say um that's breast cancer now. And we know that if people recognise us, they're more likely to use us. So what we've done is just try and simplify um our colours, our fonts, our tone of voice. So saying more fewer things kind of more clearly and more confidently. So um it's about a new confidence. It's about our new strategy and it's about really sort of driving a reappraisal and making people think, "Oh, hold on. Breast cancer now doesn't quite look or feel like I thought it did. Let me understand a bit more about it."

And people can go and have a look at the new logo. It's out now, but can you tell us from people who are just perhaps walking along listening to this podcast what it now looks like, what the brand now looks like?

Yeah. So, um, it's simplified from a colour perspective. So, um, we've retained pink, which can be controversial for breast cancer, but it's, you know, we did lots of testing and we know that people see pink and they think of breast cancer. And one of the those kind of recognition things is really important to us. Our font is simplified. It's it's easier to read. Um, it stands out more um, off the page. Um, we've we've done a TV ad um, which you'll see um, and some really lovely radio ads as well. Um, so some of it is about how we look and our visual identity, but some of it is also about this kind of confident tone of voice and it's about how we show up and how people kind of can connect with us and understand us.

That's really interesting. And so for people listening to this podcast who have perhaps been diagnosed with breast cancer already, what does the new strategy and the new the new breast cancer now mean for them?

Well, I think Breast Cancer Now is by far the biggest breast cancer organisation in the UK. And so I think and we all think at Breast Cancer Now we have a responsibility to sort of act at scale. So what we want to do is create um a support offer, an information offer and you know connections for people um whoever they are and wherever they are so that as many people as possible who want something from Breast Cancer Now is able to access it. And at the moment um we don't operate at the scale which means everybody can access all of the services that we provide. So some of what we're doing is about scale and just putting our arms around more and more people with breast cancer. Some people won't need us. Some people have the information that they need. Um but we know that a lot of people don't feel that they get the support either emotional or from an information perspective that they want and they don't always know how to access it. So some of it is about us being more present. So we are really working on how we show up in the hospital setting and healthcare setting. So people find us when they need us. Um and then also another insight that's really important is often at the end of treatment people feel abandoned. So your oncologist will sign you off. They'll say well done off you go. You might have some drug therapy to continue over many years. You'll probably have a mammogram every year but other than that people feel a little bit abandoned. So making sure as well that we're there at that point to offer them the support that they need and information that they need because actually there's quite a lot to know about the end of treatment and what comes next.

And how are you going to do that? Will someone from breast cancer now be there in the hospital appointment or at the will someone get in touch with each patient and say okay these are your next steps?

So we're working through the details of that now. Um one option is definitely to have a person um in the hospital settings. Another is to think about the health care professionals and how we kind of adopt them as being advocates for breast cancer now and what that might look like. Some of it is going to be about just having information in more prominent places more consistently. Um because we show up kind of differently in different locations at the moment and we want to make sure that wherever you're wherever you're treated and wherever you get your diagnosis and treatment you can access breast cancer now information. And also like in radiotherapy wards, in chemotherapy wards, um because often we're not present there in a way that is really helpful because you know you and I both know that you can spend quite a lot of time in those places. Um and it would be quite good to be able to access a bit more support and connection there.

Oh yeah. I mean that is what it is literally when you're at the hospital that you pick up a leaflet because often there are waiting times long wait long waits in hospitals and you will pick up a leaflet. So you are quite a captive audience and if breast cancer now has some information in front of you then that is definitely something you you will read. I was actually at the hospital yesterday with my husband and I had an appointment and the oncologist told me uh that I need to do strength training and eat more protein in order to you know keep my bones really strong because of the oestrogen suppressing medications that I'm on. And we were driving home afterwards and my husband said to me, "Wouldn't it be great if the hospital could then if it could all be integrated and they could then say, "This is your strength plan and this is the protein that you need to eat and things like that." And I guess breast cancer now is being the sort of one-stop shop that will not necessarily tell you all the things you need to do and everywhere you need to go, but provide that sort of link between the patient and what happens next.
Would that is that the right way of...

Yeah that is right and uh I think what's really interesting is one of our most popular leaflets so one of the ones that you know we have to replace most often is um post-surgery exercise leaflet so we know that people aren't getting consistent information about exercise during post pre and so on and we know that can be a really important part of um rehabilitation um and likewise at the end of treatment um people are getting really inconsistent information about how to um actually reduce their um risk of recurrence um through physical activity and then things like you're talking about so strength training and so on. So yeah, we can fill in those gaps. What we're trying to do is get a more kind of formal um referral process because it's great when an oncologist or when a cancer nurse specialist will say breast cancer now has got this great bit of information or phone their helpline. um but it doesn't happen all the time. And so what we would quite like um is to be able to kind of get our arms around everybody who's had a breast cancer diagnosis as so that they know we're here and that we can give them really bespoke information, support and connection um in a way that suits them.

Yeah. Brilliant. I know that I mean for for me as a patient over the last 14 years, Breast Cancer Now has been so important in that it is a resource that I trust. So everyone, as much as we tell you not to, everyone goes to Google and Google's, you know, what does this mean? What what what are the side effects of this treatment? What might this mean for my prognosis or whatever? We all Google questions and I know that if I see in the search results either NHS or breast cancer now, I know that I'm going to be able to trust what I'm reading there. whereas you can end up down Reddit forums and you know all sorts of other internet uh holes

what's really interesting about that is you are googling it but now what we know is a lot of people are um using the AI generated response so they're not coming onto our website so lots and lots of charities are finding a reduction in people visiting their website all of our um information is trusted it's credible um you know it's verified by at least two um healthcare professionals before we publish it. Um, so one of the real challenges we've got in terms of people accessing really trusted, credible information is rewriting our website in a way that bots will read it and make sure that our content is part of that AI answer.
So there's a statistics which says within the next three years, websites will be read by bots more often than they will be read by humans.

Okay,

which is wild, isn't it? Um, and so what we have to do is be ahead of that because what we don't want is women accessing misinformation, information that isn't relevant in the UK, um, and so on. As you say, there are there's lots and lots of really good community sourced information. So, we've got a really amazing forum where people get lots of really helpful advice from other people and peers who are having similar experiences to them. Um but again we we like moderate that and make sure that any medical clinical information is really really good. One of the things we know is people will often visit our website for a particular piece of information. So they'll have a specific question um but when they're there they'll understand that you know we offer peer-to-peer support so we can connect people with other people um like them. We offer courses for people. So um people for example at the end of their primary treatment um moving forward course is a very popular course but that doesn't come up if you Google what should I do after breast cancer surgery. Um so you know I don't think we're going to stop unfortunately um you know the way things are going in terms of AI and also I have to say I think AI can be an incredibly powerful tool in healthcare. So I think you know we we talked a little bit about early diagnosis um you know in radio uh in radiography I think AI is already showing really really significantly improved results in terms of accelerated diagnosis and so on. So it's just working with flowing with AI I think is what we're going to need to learn to do.

That's an absolutely fascinating topic that I actually think we could do a whole another episode on. So perhaps we will do that.

Yeah.

How is it going to be possible to achieve that goal to make sure that by by 2050 everyone lives and lives well?

So I think there's a few answers to that. We have to be smart about what it is that we're able to offer people at scale um because we want to really support people. Well, we have to find ways of doing that in a way that doesn't require lots and lots of money. We also need lots and lots of money. So we've got a plan to go from about 60 we we raise about60 million pounds a year um each year that's entirely from the UK public um and we are looking to increase that to around 100 million in the next five years. So we've got very big ambitions around that. We've got some really good strong plans. I'm very confident that we'll be able to do it. um that will enable us to provide more support and information, do more research um to make sure that we're you know accelerating better treatments and cures for people. Um so it's that really it's about focusing on the things that will make the biggest difference. So there's lots and lots of things we can do in breast cancer both in terms of research and supporting people. But what we're trying to be through this five-year strategy period that we're in now is be really focused on what's the biggest difference we can make.

Okay. I still find it I find it really like being in the position that I'm in of someone with secondary breast cancer knowing that there's, you know, a very limited number of treatments ahead for me. It's really hard to get my head around that idea of everyone by 2050 living and live well. What are you um how will you uh help people with that already have a metastatic or secondary breast cancer diagnosis for example?

Well, one of the things we do um is to make sure that treatments that exist are available um for people in the UK and we know that um there have been well in her very specifically recently has been rejected by um NICE. So we continue to um campaign, influence, talk about that. I had um meeting with the two pharmaceutical companies involved a couple of weeks ago, putting that back on the table, having the conversations um about how we can get in her to patients. So for those um drug therapies that already exist, we continue to we kind of will never give up on trying to get that um for people with secondary diagnosis. We know that um the drug therapies for secondary breast cancer patients will only last for a certain period of time and it's different for different people.
It's actually quite hard to predict but we also know they can then move on to another drug therapy and another drug therapy um and they are limited but they are becoming greater. So um I think about not just for um metastatic breast cancer patients but overall I think about 19 or 20 new drugs have been signed off in the last couple of years. So we know that treatments continue to um appear and you know we're putting money into that as well as pharmaceuticals and actually we're working really hard with pharmaceuticals as well um to make sure that breast cancer is very much sort of on the agenda.

Yeah. Okay. So, the last time we had you on this podcast at the beginning of 2025, you talked about your sister Katie who had had a breast cancer diagnosis and had been successfully treated and how that had given you a better more a closer understanding of what it's like to go through breast cancer. But since then, at the end of 2025, you were actually diagnosed with breast cancer yourself. Yeah. How did that come about? How did that diagnosis come about?

Um well it came about as um a result of kind of standard screening. So um I was invited for my second screening appointment. Um there was I had no signs and symptoms. I'd fully expected to be in out and getting on with my life. Um and I was recalled after my mammogram and I thought well that's a surprise. Um, and I just thought that the mammogram hadn't been taken correctly. And um, so I went um to the breast unit for my second mammogram, had um, a ultrasound and everyone was wearing breast cancer now lanyards and um, you know, as they're doing they say you know what do you do?
And I said oh actually I work for breast cancer now and um, so I talked about what I did. They you know what's lovely was I got so much good feedback as I had my ultrasound um about breast cancer now and what an amazing organisation and that was lovely and then they said oh I think we'll do a bio we're not worried but I think we'll do a biopsy and I thought oh my goodness I think they're just going to do a biopsy because they don't want to misdiagnose me I don't think anyone's worried so have my biopsy and I kind of remember thinking well at least I'll know what a biopsy is like um and that will be a good you know it's not a good experience but I'll at least have some sort of empathy now for what that feels like. Went back a few weeks later for my results and was collected by a cancer specialist in reception. So immediately I thought, "Oh gosh, I think I'm going to get bad news and I hadn't expected it."
Um, so yeah, so I got my breast cancer diagnosis. Um, because it was picked up as part of standard mammogram, it was very small. There was no signs and symptoms. Nobody could feel it. I couldn't feel it. No one could feel it. Um but and then I very quickly got my kind of treatment um pathway explained to me which was um because it was small stage one um very early that I could have surgery and radiotherapy and that I wouldn't need chemotherapy.

And you've had that treatment successfully now? Yes. And you're doing okay?

I'm doing great. Yeah, I'm doing great. Um, you know, it was an initially a shock and then of course doing the job that I do. It felt like a bit of a kind of big hall to kind of go into work and say, "Oh god, I', you know, I've got breast cancer." And decide how I was going to talk about it, who I was going to talk to about it. I'm naturally a very open person, so I've been open about it, you know, all the way through. I just wanted to make sure people heard it in the right order. my children uh you know both away um living in Scotland, one at uni, one who's got works up there. So I needed to make sure they knew um yeah it was a complicated time. It was an intense time and it was you know I was treated very quickly. Um so I was in the right place. You know I was I was very lucky to have incredibly supportive friends, family and colleagues um who you know really put their arms around me and looked after me.

Well, I'm very very glad that you caught it at stage one and that you you know you've been able to have the treatment which is because you went for your mammogram which is amazing. Yeah. Um but how did it feel not just as the CEO of breast cancer now but for you as a person to be diagnosed with breast cancer? Like it sounds like it was it was a shock but?

I mean it is it was a shock. So um I worked at cancer research okay for 13 years McMillan for five. I know the stats. I know one in two people get cancer. I know one in seven women will get breast cancer, but you still don't expect to hear it yourself, do you? You like you'll know that nobody everyone always thinks it's going to be someone else or at least that's my experience and I certainly did. I kind of thought I've put the hours in on cancer here. I done my bit. I don't think uh you know I've had an experience that means I've I've come out of the other side and hopefully you know it's you know we were talking about hopefully it's a blip in my story rather than something that will be with me for the rest of my life.

And how has the experience given you a deeper understanding and has it given you any clarity in terms of the work you do with Breast Cancer Now?

I think one of the really good things about our strategy, so before I had my diagnosis, is we were already kind of very clear on what we wanted to do, what we were going to do, and what we weren't going to do, and why we'd made those choices. Um, I think what it gave me as a person who's kind of heard those words, you've got cancer, and somebody who's been on that treatment pathway is understanding actually when you feel or certainly when I felt slightly more out of control than I expected to, which I didn't enjoy. Um, and also, you know, one of the really sort of pertinent things that I think I've come to understand is what empowerment really is. So, I think when I've talked about empowering patients before, I've thought about it as making sure that they've got the information that they need. And I think one of the things that I realised when I was being treated myself was empowerment is feeling confident enough to say, "Hold on, I want to stop this train and I want I've got some questions." Or, "Hold on, I don't think I'm happy with that decision." And I thought as the CEO of Breast Cancer Now, I I was I would been an incredibly empowered patient because I had access to all of this amazing information. And you know, I obviously am sort of completely um immersed in breast cancer, but the reality is even I found it hard to say, "Hold on, I'm not sure. I'm not sure I'm happy with that." And I thought, "God, if I find that hard, how are we going to help other women to feel confident enough to do that?" So, I've rethought empowerment quite a lot as a result of my diagnosis.

What would you say to someone else who is struggling in that setting with feeling empowered?

I think um what I would say is I I think probably what we need to do is help people with questions to ask. Help people to feel confident that it's normal and okay to say I want to slow things down or I want to ask a question or is there an alternative to X Y and Zed and just give people some tools for that. So there is the information but then there's also the how bit. Yeah. Um so it's around the how.

I would have to say that I think that empowerment is something that really comes with time because that's something that I have learned over my time over the last 14 years since that first breast cancer diagnosis. I feel so much more confident now in the hospital setting. For me, sometimes you don't want to ask something because you don't want to second guess the nurse or the doctor who is seeing you that day or you don't want to sound like you're doubting their knowledge and their ability.

Yeah.

But actually sometimes you asking that additional question is not you doubting their ability. It's just you saying it's you standing up for yourself. It's you saying is there another way that we could do this? and then sometimes getting them to think differently about it.

Yeah. And I think I think that's a really good point. I also think, you know, all of the medical professionals that I encountered wanted the best for me.

Absolutely.

Um and they do and that means sometimes not doing the first thing that they think of. Um and with you asking those questions, you'll have prompted them to rethink and re-evaluate the plan. Um and I think they'll have appreciated that.

Yeah, I hope so. Yes.

Mhm. Um, so you were diagnosed because of a mammogram. Yes. But in the UK, breast cancer screening is offered to women aged 50 and over, but lots of women don't go for their mammograms. Why is it important to go for your screening?

It's really important to go because around a third of breast cancers are picked up as part of this kind of standard mammogram process. So between the ages of 50 and 70, you can expect to get um have mammograms every 3 years. Um it's important because um if a breast cancer is diagnosed at stage one, survival rates over five years are around 98%. So you have a really really good chance of survival if you're diagnosed at stage one. When things you know um progress, the survival rates become less and less good and outcomes at stage four um you know as low as 27%. So that's a five-year survival.

That's the five year survival.

Yeah. So, mammograms are a really effective tool as is breast awareness. So, the other two thirds have picked up because people will find a sign or symptom um of breast cancer. So um people checking their breath you know we talk about it um a lot but touch looking and feeling your breasts is the other kind of part of the armoury that we have um to make sure that um diagnosis comes early

and I have to ask this that there are people like me who are breast aware who do everything right who are aware of the signs and symptoms of breast cancer who go and get it checked out straight away. So in my case, I found a lump in 2012. I went straight to the hospital to get it checked out. I did have a family history, so I knew that there was a high chance I could have breast cancer. This actually wasn't in the UK, so um I'm not holding anyone to account, but it took me four months before I got my primary diagnosis. Then 10 years later, when I was in the UK, started getting signs and symptoms of secondary breast cancer or metastatic breast cancer. um where I strongly believed it had spread to the bone. And even with my knowledge of uh those signs and symptoms, it still took 9 months to be diagnosed with breast cancer. So even with someone with the knowledge that I have, there are delays to diagnosis. And I was 29 when I found the lump, 39 when I got the signs and symptoms of the metastatic breast cancer. So I was way way way younger than the screening age for mammograms. So obviously wasn't having mammograms. what are you doing at breast cancer now to make sure that young people are taken more seriously in terms of diagnosis?

Well, we we work with GPS and primary health care professionals to understand the signs and symptoms of breast cancer. Um and we uh advocate with healthcare professionals kind of across the board around um taking seriously people young women and older women who know know their bodies and know that something's different. So one of the things we always say is if it's different for you it's worth checking out. And um we quite often get calls to our helpline from women who feel that they're still worried about something and they've been dismissed. So, you know, one of the things anybody with a signal symptom, certainly of a primary breast cancer, so a lump in their breast, should expect is a is a referral, a quick referral, um to have that checked out. Um and that's another part of the empowering story, isn't it? Is making sure that people feel able to say actually what I want is X, Y, and Z. And likewise, um when there are signs and symptoms of secondary breast cancer, um that health care professionals take that seriously. I think one of the problems with um metastatic breast cancer is it isn't always well recorded on people's medical records. Um so people and and you know sometimes a primary diagnosis particularly 10 years out won't come up very kind of prominently. Um, and so one of the things we say to people who've had a primary breast cancer diagnosis and have finished their treatment is never be afraid to remind somebody that you've had breast cancer because GPS don't necessarily go back 10 years before they open the door to you um and you talk to them about your signs and symptoms.

You're so right. Yeah. I I remember seeing doctors GPS in that time in between my primary and my secondary diagnosis. And I remember whenever I had an issue, whatever it might be, sometimes I would say, "By the way, I had breast cancer 5 years ago, 6 years ago, 7 years ago, whatever it was." And sometimes I sometimes I felt silly bringing it up because I was like, "Of course, it's not going to be related to that." But at any time it can be related to that. And as you say, it might be necessary to you advocate advocate for yourself by saying this did happen. This, you know, I have breast cancer on my history.

And yeah, of course, because you wouldn't necessarily um know, for example, a headache could be a sign of um metastatic breast cancer or you know, joint aches and so on. So um yeah, you have to leave that in the hands of the medical professionals, but you have to kind of lead them there and give them some clues.

And of course, by the way, any listeners, if you're having headaches, it's not necessarily anything to do with breast cancer. There are so many reasons for headaches, joint pains, all often related to the treatments that we're having, the ongoing treatments that we're having for breast cancer. One of Breast Cancer Now's goals is to make sure people are diagnosed earlier. So, every uh every age group, not just the younger people, how are you going to make sure people get diagnosed earlier?

Well, some of that is going to be about screening and working with within the system um to help people access screening in a more consistent way. Some of it is going to be about lobbying around diagnostic centres because we know there aren't enough diagnostic centres. Another great thing in the uh the government's 10-year cancer plan is um an investment in diagnostic um equipment and so on, which we think is really important. Working with um industry on um new ways to detect cancer. So we know that um there are blood tests now that are starting to show real promise in terms of people um understanding a breast cancer diagnosis long before kind of signs and symptoms show up. So some of it is about well we've got some really effective ways of helping people get diagnosed. let's make sure they're being really well used. And some of it is about innovation in this space and helping to accelerate some of that so people can get diagnosis much earlier um and therefore have much sort of more effective treatment that has much lower impact on you know their lives. So that's part of the living and living well.

So many of our listeners, just going back to uh what we talked about with metastatic breast cancer, many of our listeners will have had breast cancer and been successfully treated like you um and they're possibly getting on with their lives having tamoxifen or other drugs to help keep the cancer away. For those people, it's really important that they look out for the signs and symptoms of the breast cancer spreading. Yeah. How uh what's your focus? what kind of work are you doing around helping those people um at breast cancer now?

So um I talked about the kind of what we're in the world to do is give people information, give people support and help them connect. And so in this space um what we want to do first of all is make sure people get really consistent information. So what we know is at the end of a primary breast cancer treatment, so you'll see your oncologist, your oncologist will say off you go with your tamoxifen or whatever it is that you're um prescribed and uh come back if you're worried about anything. And people do worry about things and they don't go back because they don't want to bother an oncologist, but they also might not get information about how to prevent their risk of recurrence.
And there's really interesting data around um risk reduction and some of that is really um things that are in our own hands. So being active is really important, having a you know a healthy BMI is really important. Um having a healthy diet is important, you know, moderating alcohol and so on. So people don't always get that information in a consistent way and they don't necessarily understand the impact of it. So a study recently showed that um being active and that's moderately active that isn't like super active can have higher efficacy in terms of preventing recurrence than preventative chemotherapy and so much more palatable right than preventative chemotherapy. So it's making sure people have that kind of information. There's also this trajectory of recurrence. So about 25% of people unfortunately will have a recurrence after a primary breast cancer diagnosis. Um but that can happen over a sort of 20 year period like you know yourself that when you had your secondary diagnosis that was 10 years later and that's quite common during that 10 20 year period new research will have been completed new insights will have been known and if you last talked to your oncologist 10 15 years ago you won't know about that unless you're being very sort of actively um self-educating. So, one of the things we want to do is to kind of say there are around 60,000 women each year and men who finish their um primary treatment and we want to kind of get our arms around them and say just keep in touch with us. We'll make sure that you know the most relevant and pertinent information for you. Um and if you've got any worries, come back and talk to us because we're always here. We know that you finished your primary breast cancer um treatment, but it doesn't mean that we aren't here for you because we are. So those are those are the things and then so that's information it's support when they need it and also it's putting other people in touch um with other people who are going through the end of their treatment who are kind of entering this new phase of their lives

And how do you do that metaphorical arms around the person, Do you is it like is there a point person for every person who finishes their cancer treatment or is it like you're on a mailing list and we'll follow up with you every so often?

So the answer to that at the moment is um people have to we have to stay in touch with them because they've been in contact with us. The ideal scenario and something that we're working with the department of health on is a referral route. So at the end of the treatment pathway people are referred to breast cancer now as a point of contact and so then we are able to maintain a relationship with all of them and I think for the sort of general health of the nation that will be a really really good thing. we know that the NHS doesn't have the capacity um to to do that and we we can do it and we can do it on their behalf. So um I'm optimistic that at some point during the strategy period we will work that out and um be able to more easily work with that cohort of people finishing their treatment every year. Y

eah, I think that would be absolutely brilliant because it really is the period. Lots of listeners will, you know, this will resonate with them. When you finish your treatment, whether it's radiotherapy or chemotherapy or surgery, you might have had a year's worth of treatment and that period of your life will have been so full on and then suddenly you're no longer going to the hospital every month or every day. You're left either with a drug that you have to take daily, sometimes with no drugs at all. you're just go, you know, triple negative, for example, you're just thrust out into the world and expected to go back to your daily life. And from speaking to all the people I've spoken to over the years, that seems to be the the period where people feel most at sea and could just do with those arms around them. So, if they could be referred to someone from Breast Cancer Now, I could just 100% see how that would be really, really comforting. Good.

Good. Well, I hope it happens soon. But in the meantime, of course, we are here for everybody. So, anybody who needs any support information, wants to connect with somebody, get in touch.

And this might be too personal a question, so feel free not to answer it if you don't want to. But how do you feel? You're you're at that time now. Um I know you've not had chemotherapy, but you are at that sort of end of end of treatment, and you've obviously got access to the wonderful information of breast cancer now at your fingertips, but how do you feel now um to be coming out of the the uh active treatment?

I feel a sense of relief um that I'm out the other side. Um I feel very fortunate that my treatment was fairly light compared to some people um and uh that was because it was caught at such an early stage. Um you know recurrence, breast cancer recurrence is a really big part of our new strategy. Um we really want to understand um recurrence. We want to understand dormanancy. So that's when uh it looks like you're cancer-free, but you have a cancer cell or two that have kind of gone to sleep. Something wakes them up and that's what creates um you know a spread and we don't understand dormancy um at the moment. So that's a really big part of our strategy is thinking about those things. So I spend a lot of time talking about it. Um what I know is 25% of people will have a recurrence at some point. um the speed of that recurrence um will differ from person to person and it will differ in terms of cancer type. Um it's present in my mind but I'm also very aware because I talk about breast cancer every day that it could become a really huge um part of my thinking about me. I've been lucky I've been quite able to disassociate my personal experience from my professional life. Um and I'm hoping that that will continue.

And I know you're from speaking the last time we did this podcast together, you do lots of strength training, you go to the gym, you're very active, but has having this diagnosis and knowing that keeping active and keeping a good diet um and various lifestyle changes um knowing that that can help keep the cancer away. Has that changed your approach at all or and have you become more uh vigilant of your own body?

I've definitely become more vigilant of my own body. Um, one of the reasons actually that the surgery, for example, had quite low impact on me was because I went into it very physically fit. So, we we haven't talked a lot about pre-habilitation, but even two weeks of exercise before surgery can make a huge difference to people's ability to um rehabilitate. So, um I was lucky that I sort of went into it pretty fit. Um, and then I got back to the gym pretty quickly. um and did sort of light exercise to start with but picked up my strength training as quickly as I could. Um some of that is about physical fitness and some of it is about like mental wellness. So I'm not somebody who finds meditation and sitting quietly easy. Um and so as part of the exercise is my way of um sort of de-stressing as well. But I would advocate to anybody anybody actually whether they've had a breast cancer diagnosis or not to be active. you know, I sit on um that there's a group called the Richmond Group and that it's a it's a um collection of healthcare charities. So, heart charities, stroke, diabetes, lots of different sorts of cancers. And we come together because we know that physical activity is one of the things that will help prevent all of those conditions. Um and it's a really really important part of staying healthy.

We have done a couple of episodes previously about uh pre-habilitation and exercising with cancer. One was with Dr. Sam Orange and one was with Fran Whitfield who is a metastatic patient herself and a personal trainer um and cancer exercise specialist. So we'll point to those um episodes in the show notes. So we um touched on the type of breast cancer called triple negative breast cancer a moment ago. There are certain types of breast cancer that are often seen as more aggressive or that have fewer treatment options such as triple negative breast cancer. What are you doing to help with those specific types of cancer such as triple negative?

Um triple negative is a very aggressive cancer. Um what's interesting is it shows up um in the black community actually much more than um in other communities. Um in terms of recurrence, uh the recurrence rates are high in triple negative and they happen quite quickly. So they don't follow the same trends as an oestrogen positive um breast cancer. So what we're doing is two things. We're doing some research into um triple negative so we understand it better u holistically and we're also looking at that recurrence part and why it is that um triple negative recurs so quickly um and what we might be able to do to stop it. We also of course are offering support um to people with a triple negative diagnosis and we're able to put people in touch with other people who have had that sort of diagnosis for kind of connection.

And what a lot of people don't know is that you fund some incredible research. You've actually got this beautiful laboratory at King's College London where if I'm not mistaken there's a whole triple negative lab with loads of work being done.

Yeah, that's right. So, um, we're very focused on it. You know, I talked about the fact that the strategy is about being kind of super focused on making the biggest difference. And we think, you know, if we can crack triple negative, um, breast cancer, then we're going to be helping a lot of women um, and particularly a lot of women who don't have great outcomes.

Yeah. And we are going to be doing some episodes specifically around triple negative breast cancer. So, um, people, please stay tuned to the podcast to find those episodes. One of the things I hear time after time and again we have touched on it very briefly is that certain communities or ethnicities can have a worse outlook than others and I know that that's down to lots of different factors like later diagnosis or lower health literacy in deprived areas. What are you doing at breast cancer now to help with health inequalities within cancer?

Health inequalities is a really important part of our new strategy. um we're being pretty specific in thinking about people the the sort of 20% of people that have the least good outcomes. So we're doing some work to really understand who those groups are um in terms of kind of um the ethnic groups that we see have less good outcomes. Some of that is about working with those communities um to sort of bust some myths. So for example um there are quite a lot of um African women who won't go to the doctor unless there's something wrong. So screening is seen as a bit of a waste of time and um there needs to be there needs to be an ailment almost to to kind of have a medical procedure. So there are all again this this isn't I I wish there was a quick fix but this is about kind of local grassroots work working with different you know working in different places so rural communities is really interesting as well. um lower socioeconomic groups are really interesting, but different interventions will work in different places. And so we're, you know, we've done some tests already um on breast awareness training and on screening, but we're going to continue to do those things.

Big question for you now, Claire. How close are we to finding a cure for breast cancer?

Um this is a great question, Laura. So, um, cures is one of those words that sort of, you know, is a little bit, um, controversial in cancer charities and, um, I think that, well, we know that there are lots of different sorts of breast cancers, right? So, there's not going to be a cure, but what we know is that there are some cancers, uh, HPV kind of related cancers, for example, can now be vaccinated against in young people. So, essentially there is l

ike cervical cancer? Cervical cancer.

Yeah.

And and there are a few other cancers that are HPV related. Um so you know essentially it can still exist but if people are vaccinated they won't get it and that for me counts as a cure because we have a tool in place which means nobody need get um that cancer and HPV related cancer again. So I think there are lots of reasons to be hopeful that across you know different cancer tumour types um cures will be found um and I think you know we continue to do research into treatments um and so on for cancer and you know some of that early diagnostic work can mean people will better understand and will be able to take steps to prevent themselves developing cancer which is another kind of cure. It depends how um how you think about cure, I think, as to whether or not um you'd say we're close or not, but for sure reducing the number of people that die of breast cancer is definitely within our reach.

So, the likelihood is that there would never be one cure for breast cancer. There would be multiple for different types of breast cancer. And are you saying that it would be a vaccination against different types of breast cancer is the more likely thing to happen?

I don't know if vaccination is going to be um is going to be the route, but what we know is from other cancer types that you know those sorts of things are happening now. Um and you know we can learn from those as we can from kind of other long-term diseases that um are being essentially stopped in their tracks. Um which is you know good enough, isn't it?

Oh, wouldn't that be amazing?

Yeah.

And how close are we to finding out what causes breast cancer?

Well, we know, you know, we we know lots about um risk factors of developing um breast cancer. So, I mean, we should start by saying a lot of them you can't do anything about. So, aging um and the sort of metabolic breakdown of your body um is one of the things that creates these sort of um mutations which mean you develop cancer, breast cancer and other cancer types. Um, we know that lifestyle can affect it. So, um, things like your diet, things like smoking, um, exercise, we've talked about a lot, but that's really important. Um, low blood sugar, you know, various kind of lifestyle things. And then environmental things, so what you're exposed to can also, um, you know, have an impact. So, I think we know what at a kind of macro level causes breast cancer. uh what's quite difficult for individuals is to say the reason you've got breast cancer is this um but every day I think we're learning more about um risk factors and ways to reduce risk.

Let's just briefly talk about pink because you said that you've done lots of lots of talking to people, lots of studies and you decided to stick with pink as the colour for breast cancer. Now lots of people associate pink with breast cancer. It's a very effective tool, but lots of people who've had breast cancer think, well, there's nothing pink and fluffy about it. It's a horrible, hideous disease. And some people sort of take offence.
So, what would you say to those people who they say pink gives them the ick?

You know, I can't stop it giving people the ick. And I I totally get it. I think the pink that I think about pink as being a brave, confident, recognisable colour that in, you know, will immediately and instinctively make people think about breast cancer um in a way that if we changed it to blue, it wouldn't. And um I should say we've got purple as a colour that's synonymous with secondary breast cancer for many people. So we haven't lost that. That's in our colours, but it's just not in our kind of uh main logo.

And why was it important to create this new look and to spend charity money, I guess, on creating this new look?

Yeah, it was important because we need people to recognise breast cancer now. Um, and because we had a brand that was a little bit well, it was there was a lot going on. People didn't necessarily see it, recognise it. And we know that if people are aware of your brand, they're more likely to do something as a result of it. So that's reach out to us for support or fund raise for us and fundraising is a really really huge part of our ability to be successful because we rely on the UK public so extensively to be able to do the work that we do.

You need to raise a huge huge huge amount of money to achieve all these things and I absolutely want to make sure that you raise that money. So, how can our listeners get involved with Breast Cancer Now um to help with that fundraising?

There are lots of ways. There are lots of ways. So, um some people choose to give us a regular gift and just say, I'm going to give you £10 a month and um I will enjoy seeing what you do with it. Um and that's one really straightforward kind of low-effort way of giving if people can afford to. Um and we're very grateful to our we call them regular um donors. So our regular donors, some people prefer to take on a challenge and get sponsored and so on. So there's, you know, things like London Marathon, the Great North Run, we do bike rides, we do swims. A lot of people do their own thing. So we'll just say, well, I'm going to go and do a fundraiser. And they'll do a disco or a party. Um and then we have things like um wear it pink. So for people that don't have the ick about pink, um people can get dressed up in pink clothes and do it, you know, in offices and with colleagues and so on. And that's a really big fundraiser for us as is afternoon tea. So lots of people have an afternoon tea for us.

You actually got your breast cancer diagnosis in breast cancer awareness month, didn't you?

First day. So yeah, first of October. So yeah, it was breast cancer awareness month. A very busy month for me um professionally. And you know, my diary was busy, busy, busy, busy. And um yeah, I went to the hospital on the 1st of October, got my diagnosis and wow actually do you know in many ways it was a great distraction because I was very busy at work and when you're waiting for the treatment that's one of the that's one of the tricky times I found was um telling people communicating it not yet sort of being in the space of stopping it in its tracks. Um so yeah it was a very strange um coincidence.

And what have you learned from having breast cancer yourself?

Um, well, I've learned that it can happen to anyone and uh, you know, and I sort of knew that, but now I've experienced it, I think I know it more. Um, that you can be healthy and you can do lots of those things that should reduce your risk and still get breast cancer. Um, and that, you know, life, I mean, it's a terrible cliche, isn't it? But life is for living. And so, you should do some of those things that are on your bucket list and and have some fun. Um, and you know, take the joy where it is available.

Absolutely. I'd like to finish with the question we're asking everyone on this podcast, which is in one sentence, if the listener takes one thing away from today's episode, what should it be?

I think on the basis of my experience, be breast aware. And if you're invited for a mammogram, definitely attend it.

Absolutely. I mean, you being here today to tell me that is proof that going for your mammogram is absolutely 100% worth it. So, if you are invited to one, go. Yeah. Claire, thank you so much for all that you've shared with us today and thank you for coming on the Breast Cancer Now podcast.

Thanks for having me.

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