It was just a terrible way to be told and to find out that actually this breast cancer that you thought you'd dealt with and was all, you know, being covered by tamoxifen, shall we say, in the surgery you've had in the radiotherapy, seems like it's reared its head in another part of my body that I've absolutely no idea about.

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 episode is a very hopeful one for anyone living with metastatic or incurable breast cancer, or perhaps any listeners whose loved ones have been diagnosed. Our guest, Laura Aschhurst, has been living with incurable cancer for almost 20 years. We'll be talking about her diagnosis and treatment and why she believes she's survived the disease for so long. We'll also talk about her brilliant campaigning to help others living with advanced or late stage breast cancer. Laura, welcome to the podcast.

Thank you for having me. Or should I say welcome back to the podcast? Because you actually came on this podcast in 2019 talking about how long you'd lived with metastatic breast cancer then and now you're back here now.

Yeah, with Claudia Knowles. And yeah, I actually hadn't really connected because in my mind I was thinking it was still when it was breast cancer care. But of course it wasn't. It had changed to breast cancer now then.

It was just changing to breast cancer now. Claudia was the previous host of this podcast. So we're going to start with a few warm up questions. If money was no object and you could go anywhere in the world on holiday or even to live, where would you go right now?

I would go back to Florence, which is where I went with my twin sister and my older sister um just about six months before our 40th birthday. And yeah, very happy memories there.

Fantastic. And if you could have an amazing chef cook a special meal just for you and your loved ones, what would you order right now?

Steak and chips with peas.

Nice and simple.

Bit of veg in there as well. of fibre. Complete the sentence. Right now I am

content.

Right now I want

ongoing stability.

I will never

say that I was grateful that cancer came into my life.

Okay, that's really interesting. I might ask you to elaborate on that in a moment. So your story is absolutely incredible. So we're going to start at the beginning. When and how were you first diagnosed with breast cancer?

So I was first diagnosed in September 2001. ah My daughter was three and our son was six months old. And oh we had just come back from holiday in Ibiza and it was about a week or so actually before I was about to return to work following my maternity leave and sadly the world experienced one of the most horrific events that we ever faced which was 9-11 and I had my first surgery for breast cancer two days after 9-11 so on the 13th of September 2001 and Yeah, that was pretty gruesome. It was a horrific time, as we all know. And um I just remember thinking my world's about to fall apart and the world seems to be falling apart.

I do know now that the tumour, the lump was already there before I was pregnant.

Yeah. And how did you find it? How did you? come to be diagnosed?

So literally, I mean, I have to be very honest and say that I wasn't checking my breasts. I was 34. It didn't really enter my head to check my breasts. We're all a lot more breast aware now. I actually found it in the shower when I was showering. We'd literally come back from our holiday that day and my husband had taken the children off to the local park and I was busy unpacking bits and had a quick shower and literally felt it in my right breast and then thought that's a bit strange, that feels odd. And then when I got out of the shower and went to dry my hair and clip my hair up as I pulled my hands above my head to put my clip in my head, I noticed some puckering and then put my hand back on that area that I'd felt in the shower. And that was the moment when I thought that there's something not right.

So you had your treatment and surgery for primary cancer?

Yeah.

And then how and when did you find out the cancer had come back?

So it was three years later. So September, again, 2004, and um another lump developed in the same breast, um non-related to the first tumour. So it meant that um I had had uh lymph node sampling at the first primary um episode and they took 12 lymph nodes, I think. They were all clear. But the... The next time this lump developed, they said it wasn't related to the first time and that now I would have to, well, they would encourage me to have a mastectomy. So in September 2004, I had a mastectomy with an immediate reconstruction because they explained that because I'd had 25 sessions of radiotherapy to that chest, side of the chest wall three years earlier, it wasn't possible to have any more radiation there. em but I have to say, The way that that was described to me, shall we say, they kind of kept to a minimum, the kind of experience it would be post-surgery. I wasn't prepared at all to have a mastectomy and immediate reconstruction, and I had muscle taken from my back. That took me about four months to recover from. And by that point, you know, two young children running around, I was quite debilitated.

Are you talking mentally or physically or both?

Both, because... m I think I had a little bit of a cavalier attitude towards my first diagnosis of breast cancer and thought this is just something that they're telling me I have to have removed, it's a lumpectomy, I'm just going to have radiotherapy and realise now that kind of approach is utterly ridiculous because radiotherapy is actually considered to be more curative than chemotherapy but I hear so many people now talk about I'm just having radiotherapy. em without perhaps realising the intensity of how radiotherapy works in the body. So I did have a bit of a cavalier attitude, I think, and I was very shocked when another tumour developed in that breast. And then all kinds of questions around, well, crikey, you if that breast had been removed, first of all, it wouldn't be there now to grow another tumour. And all of those kinds of questions popped up, but... I was floored really the second time.

And that second time was another primary cancer wasn't it? It hadn't spread beyond the breast at that point.

No.

So when did you find out that it had spread beyond the breast?

So um I actually was diagnosed in December 2007 but actually had been breathless for at least six or seven months before that. So I mentioned earlier that one of my favourite places in the world that I've been to and would love to go back to is Florence but that holds particular meaning for me because myself and my twin sister and my older sister, had to, we um arranged one day to visit and go up the top of the Duomo tower and I had to come back down halfway, halfway up. I just literally couldn't take another step. Went back down and waited for them in the piazza and sat there and thought, I'm six months away from being 40. I need to get fit and had absolutely no idea that anything to do with breathlessness. might be in any way, shape or form connected to my two previous breast cancers.

You mentioned that on the previous podcast that you recorded for this podcast in 2019 actually about not knowing that breathlessness can be a symptom of secondary or metastatic breast cancer, which I think a lot of people don't know. What is the difference though between breathlessness, normal breathlessness and breast cancer related breathlessness because I don't know anyone who walking up loads of steps wouldn't be a bit breathless because that's literally how it kind of works when we're exerting ourselves.

I think for me it just felt as though I was really quite unfit and I really couldn't get my breath.

Sort of like you can't breathe as opposed to you just out of breath from exercise.

yeah so you know I have to say that I didn't have uh a good history of being somebody that exercise regularly. But this felt different to being out of breath during normal exercise. um And if I moved around quickly or I was rushing around with the children and then it it started to be, you know, when I was even just going to the up the short flight of stairs at home. But I didn't actually relate that to anything. I went to my GP. really with lower back pain. It was that that prompted me to go. But again, not in my mind thinking it was anything to do with my previous breast cancers because I knew nothing about the signs and symptoms of metastatic breast cancer back then. I had really real problems on the morning getting out of bed. And my husband said, can't carry on like this. You need to get this looked at.
So I went to my GP and I was referred to for a spinal MRI. And it was the spinal consultant who had the job of telling me in a very kind of odd set of circumstances that my back was the least of my worries. I was on my own when I received that news because a couple of years earlier, sorry, the year before I'd actually left my full-time job as a senior lecturer in a college. Two episodes of breast cancer, the stress was enormous. It was a very highly pressured job as well. And I had left my position and set up a complementary therapy treatment room at home. So I had my own business. And my husband was working away in Japan and I went to the appointment on my own and my mother-in-law was looking after the two children and I actually had clients to get back for. That's how I just thought this is going to be in and out. He's going to tell me, you know, I might have to do some exercises for my back. And I can remember sitting there looking at my clock thinking. looking at my watch thinking, I'm the only person here. There's nobody else in this room. What's happening? And so um I could see him on the telephone and I was sat there for about 30 minutes. So he came out and said, I'm so sorry I've kept you waiting. I've been trying to get hold of your breast care team and... I just didn't know what he was talking about really. said, I don't understand why. And I said, I'm really sorry. said, but I've got to get back. I've got clients waiting. And he said, well, can you just come in and sit down and I'll talk you through what I can see here. And that's when he said, the lower back pain you've been experiencing is a little bit of normal wear and tear on L4 and L5. He said, but it's this shadowing in the lung regions that I'm concerned about. And he said, I actually am not really the person to be sharing this news, he said, but you can see what you can see and it's actually cancer in your lungs. So of course, the first thing I thought was I did have the odd cigarette. I've never been a proper smoker, but I had the odd cigarette in my 20s when I was socialising and I said, so you mean lung cancer? And he said, no, nothing to do with lung cancer. said, I think this is metastatic breast cancer from your, well, one or either one of your previous. primary breast cancers. I was by myself. It just kind of landed in my ears and rolled around my head and I just had no idea really what the impact of that was. em But I do remember saying to him, it popped into my head. I said, so we'll obviously have to have surgery. I'll have to have surgery and have all this cut out. And he said, no, no, no, it's not like that. It's not like that. This is breast cancer cells in the lungs. And it just didn't know what to say. I had to drive home on my own. I had to ring my husband. Obviously, there was a big time difference. It was just a terrible way to be told and to find out that actually this breast cancer that you thought you'd dealt with and was all, you know, being covered by tamoxifen, shall we say, in the surgery you've had in the radiotherapy, seems like it's reared its head in another part of my body. that I have absolutely no idea about.

And had it spread to your lungs and anywhere else or was it?

The pleural lining. Yeah

So I received my official diagnosis on the 12th of December, 2007. So. And it was I'm with I'm with the same oncologist now and at the time. the scans and so on, they said that it looked like it was in the liver as well. um So when I was given the official diagnosis, it's in the lung region, the pleural lining, the liver. um You've got between three to six months if you choose not to have chemotherapy and up to two years if you choose chemotherapy. And then I can remember sitting there thinking, so that means I do have a choice. Some people choose not to have treatment. And my oncologist said, yes, of course, some people do choose not to have treatment. And of course that wasn't going to be an option for me. And my husband was with me and our world fell apart.

What an extraordinary thing to be told at that stage. How did it feel to be? told you might have three to six months or two years to live?

I just saw my whole life flash in front of me. And again, that might sound a bit stereotypical, but that is what happened. I can remember having an experience where I felt as though I wasn't actually in my body. I knew I was in the room and I could hear what was being said, but it just didn't feel like it was real. And I felt as though could see what was going on from an aerial view. em I've spoken to, I've had many years of support from a wonderful clinical psychologist called Dr. Annie Hickox and she has explained the correct term for that. But this kind of out of body experience that shock presents em with sudden and unexpected news of that kind. And I just couldn't see beyond, well, I couldn't actually see beyond Christmas. This was the 12th of December. Megan was going to be 10 on Boxing Day. Jack was six and a half. And so I said, well, can we at least have Christmas before I start chemotherapy? And she said, no, you have to start. My recommendation would be that you start next week. So I had my first chemotherapy on the 18th of December, 2007.

What did they get wrong? Because somebody told you by the sounds of it, you had a maximum of two years to live and you're now here it's 18 and a half years later.

I think in hindsight, that prognosis was given based on the limited drugs that were available then. And uh the fact that on that day, the report she was looking at said liver metastasis. So the fact that it was in two kind of visceral sites. uh Yeah, and based on her experience of the kind of survival rates that she was seeing based on the treatment that was available. So in my primary breast cancers, I hadn't had chemotherapy, you see. So this was the first time that I was exposed to chemotherapy. And she just said, you'll be on chemotherapy for the rest of your life. But the chemotherapy didn't work.

OK, so what happened? And was it in your liver?

So then so a scan six months later revealed that that area of metastatic spread in the liver was then deemed by another radiologist to be fatty cysts.

Right. OK.

And I was very angry. It was great news, but I was really angry.

Yeah.

Because em because anybody listening to this that knows about the metastatic disease and sites, et cetera, to hear that it's in lungs, pleural line and liver is a very tricky situation. And then I was being told, it's not in your liver. And I felt really angry, happy, but angry. Which, you know, in my professional work now, I teach mindfulness meditation and, I know a lot more now than I did back then about how it is possible to experience two polar opposites of emotions at the same time. And the answer was that, know, human beings make mistakes, make errors when they're reading things. And yeah, so the, so the, but the chemotherapy that I had, everything grew while I was on chemotherapy.

Wow.

So obviously the nature of my metastatic disease developed resistance to, to the chemotherapy.

So then what happened? Why are you still here? What treatment happened?

So then I was, um, given an aromatase inhibitor, let us off. just, having faced the gruelling regime, as you know, of chemotherapy, I looked at these tablets and thought, well, what on earth are they going to do? Obviously, I know a lot more now, and I would ask a lot more, but I still maintain that a lot of what we experience as breast cancer patients isn't fully explained before we embark upon whatever the treatment might be. And knowledge is power and you can prepare for and be, you know, to be forearmed is forewarned kind of thing. But I really do feel that there were aspects of my early treatment that just weren't explained. yeah, I mean, I mentally couldn't function. So the person I am today is there's just no contrast.

Yeah,

You know. I see people, I've supported people, friends who've run marathons and things like that and done real physical challenges during chemotherapy. I was virtually bed bound. I just couldn't function. And I think, again, it was the physiological impact of the chemotherapy. But I really did have quite a serious mental decline.

That makes sense, because you'd also just been given this news that, you know, you weren't expected to survive. much longer than a couple of years. you know, it's an awful lot for the body and the mind to cope with.
So letrazole, was that, that treatment works essentially?

So letrazole started to, started to shrink down. That's probably not the right terminology, but started to shrink down the disease. And my oncologist says that the way she describes it is that The biology of my disease has an exquisite sensitivity to the chemical compounds, the way that the letrazole all works. She has always used the words when it stops working.

Right.

Not if. However, I actually feel less confident as time goes on. eh Although I've had so many years of being stable, I feel less confident. um as though my luck could run out.

So have you been only on LetraZole for all of these years?

I'm on denusenbob as well now.

That's a bone strengthener.

Yeah. So basically em the one before that was Demeter, I think. So I've got a lot of bone issues because of being exposed to the LetraZole for so long. em And again, that's another, that is another issue that I have that women aren't given the information that they need. when they are prescribed an aromatase inhibitor in terms of how that affects their sexual health, their sexual functioning, how the impact of going into a very quick and treatment induced menopause and then having aromatase inhibitors on top of that. There needs to be so much more support for women. It's just incredible that there is the lack of support. around all of that, the side effects, because they're immense.

Yeah, I mean, and that's obviously where breast cancer now comes in because our oncology teams and our surgery, you know, surgeons, understandably, their job is to keep the cancer away. And it's such a tricky, tricky situation because a drug like letrazole comes in with the hope that it will keep your cancer away. And for many people diagnosed with metastatic cancer, you're thinking in terms of, know, years, might get a few years. You don't necessarily think in terms of decades.

There aren't that many people like you who have survived over a decade with metastatic cancer. And of course, the longer you are lucky, the longer you are fortunate enough to survive with metastatic cancer, probably the more you're going to be feeling those long-term side effects. But it does make sense that, you know, it's not the oncologist or the oncology team, perhaps, em job to support. And that's, you know, one of the ways we try and come in with this podcast and support with those side side effect issues like sexual health, like the mental health, like the physical exercise side and all of that. But as you say, there's. And that's the thing, isn't it? The best oncologists in the world can't treat the mental impact.

Yeah. Can't doesn't prescribe. for the mental fallout of receiving a devastating diagnosis like a breast cancer diagnosis. um So obviously there are many constraints within the NHS, but individuals need to be much better supported. um Almost as though you were their oncologist, but you then referred to other allied health professionals within the NHS that said, look, right, Let's look at bone health. Let's look at sexual reproductive health, em mental health. All 12 weeks of the mental health support that I've had has had to be paid for privately. And really that's not people. People want to be able to function, to contribute, to still work, to contribute to society, to be, you know, to be a functioning human being. And we need. a lot more support than we currently get.

What do you think needs to be done in an ideal world?

we need to have a much more holistic approach.
In the NHS? From the health teams?

To the treatment of cancer we need a much more holistic approach because you know it's a disease that the term breast cancer is an umbrella term for so many different subtypes of breast cancer and until you're actually in the world of breast cancer you're not aware of that breast cancer is breast cancer. Well of course it's not we know there's so many different types of breast cancer and The way that science has moved on in terms of knowing about our genomic makeup, DNA, the microbiome, gut health, all of that, the individual nature of one single human being and how they respond to that treatment is going to vary so much amongst a line up of 10 women, for example. It's so complex. There's no one answer. But personally, and having kind of been able to have a bit of an overview over the last 20 odd years, we need to be doing more around holistic care to be able to live well alongside the cancer and post survivorship.

You've obviously got the LetraZole, is the medicine that's working really well with your body. You've obviously got, you know, it's obviously something that just worked fantastically well for you. em But alongside that, what are you doing and what would you say has contributed to helping you live so long with a stable cancer on LetraZole?

So I always say and will say that it is the LetraZole that is doing the work. um my ability to live well alongside that is em the attention to my mental health that I've had to do. em I was first referred to my first eight week mindfulness based stress reduction program in 2012. Didn't really take it that seriously and didn't really understand it to be honest. And then my mental wellbeing took another dip and I was on, there was a period of time when I was on antidepressants and I can't tell you Laura how many hours of my life I have wasted. down rabbit holes on the internet. But I did come across a paper that said that there was some kind of interaction and whether it was a valid, reliable paper. But I decided overnight that I was going to come off my antidepressants, which is not advisable. nobody would ever say that that's a good idea. But I decided that I didn't want to take them anymore. And that was that. And I was going to look at other ways to support my mental well-being. em Now, obviously, there's a lot of debate and discussion around the benefits of antidepressants. and I would say that I was doing really well on them. um It was rather silly of me to come off them. uh But then once I'd made that decision, I thought I need to look at other other avenues. And I came back to the mindfulness and explored ways of supporting my mental well-being that way and then went on to training it. And then that's how I my living now as a mindfulness meditation practitioner, supporting lots of cancer patients, because some of my private work is with Percy Health. um And that's, that's, I would say that that's my lifetime's work.

Yeah. Wow.

Being able to support people coming from a stance of lived experience em and guiding people through a program of mindfulness meditation and looking at how at first the reaction is often what on earth is all that about? em but then over a number of weeks to be able to see some changes and then people start to develop a daily meditation practice and then look at how that influences their well-being and then they really want to engage and that's exactly what happened to me. So I went from being a complete cynic to knowing that my meditation practice, if I don't do it, it is like I haven't cleaned my teeth. um Now. how that's impacting my immune function and helping to boost my wellbeing, who knows?

Yeah, that's the thing. don't... Nobody can, no one's going to be able to tell me that.

Yeah, yeah. It's like me, for example, I do lots of exercise. I take care of my gut health. I get lots of sleep, get lots of water. There's another thing that I was just thinking and it's completely escaped my mind, but... Oh, acupuncture. But I don't know which of those things is helping. They're probably all helping is the thing. And if I think if something's making you feel good and it is typically a healthy habit, for example, know, smoking might make you feel good, but we know that's not a good thing to do em cancer wise and for your health. But if it's, if it's sort of known to be a good thing, like mindfulness or like exercising or whatever, then...

The impact of exercise,

Chances are it will have a good impact

The research now that's emerging about movement, you know, this idea of movement is medicine. The impact of exercise is phenomenal and how that affects immune function. em it doesn't have to be really vigorous exercise, gentle movement. One of the components of mindfulness is what we call mindful movement. And even that kind of movement triggers enzymes in the body that helps strengthen the skeleton, have a protective function. And it is a whole fascinating area of science. But I think, you know, the cancer drugs are to treat the cancer. The fallout of the cancer drugs is the toxicity that we have as a result of being exposed to the cancer treatment. How can we prop up on bolster and support our well-being with other things?

Yeah.

Like good sleep. moving regularly, eating well.

And what about nutrition? Have you changed your diet a lot over the last, well, since 2007 when you were diagnosed?

Well, I'm going to be very honest and be truthful. There was a period of time when I visited a naturopathic doctor and for six months I was on a, I use the word regime because it was a regime. No sugar, no dairy, no alcohol. No meat, no processed food, no fish. So I lived on vegetables and rice for six months. The damage that I did.

No protein.

Very, very little.

Okay.

The damage that perhaps some protein from within the vegetables, the damage that I did from living in that way. My oncologist said I had contributed towards my loss of bone density. um I looked very unwell, lost more weight. And the psychological damage of feeling deprived, I would go out with my family for a meal or could the restaurant do a plate of vegetables. em And that was not helpful. And I stopped it and reintroduced all of the basic components of what comprises a healthy diet.

So now your diet is just quite balanced.

It's a balanced diet.

Nothing radical is... No. contributing to your survival diet wise?

Absolutely nothing and I really think it's important that people hear that because it would be wrong for anybody to think to come away from listening to this that oh crikey I'm gonna go and change my diet. I'm actually saying that what I did was very damaging to me mentally as well.

Well thanks for saying that because if you google the longest person to survive with metastatic breast cancer in the UK your name does come up. I think there's someone in the US as well, but I can imagine that because you are, I am guessing one of the longest surviving people with metastatic breast cancer, people want to know what you're doing. obviously it would be risky if you came on here and said, well, I'm vegan and um paleo diet or whatever, you know, that would be quite a risky thing to say. does it feel like a sort of pressure on you knowing that you've survived?

Well, I'm always very honest about saying that, you know, I am fortunate, not lucky, I'm fortunate that the biology of my disease has locked on to the LetraZole. And actually, I mean, I didn't ever have any testing for her to put ER positive disease. And it's very important that people understand that the complexity of breast cancer is is such that there are a lot more aggressive breast cancers than I had. My original primaries, you know, uh were Easton driven. So that's important to hear as well because, you know, I do feel, I mean, it'll bring me onto this topic of survivor guilt. I do feel uh pressured sometimes to kind of... explain what is my secret. There isn't a secret. There isn't a secret. next time I go for my review with my oncologist, next time my bloods are looked at, next time I'm scanned, I could have progression. I was having a conversation last week with my oncologist about, felt as though I always feel a little bit like I've missed out on having a CDK46 inhibitor because they came out long after I had started LetraZole. That's like ribocyclib and palbocyclib. And I remember talking to my oncologist when those drugs were approved in combination with LetraZole. And she said, no, we don't need to expose you to anything else because the LetraZole is doing the work. but funnily enough, just last week, I was talking to her about that. And she said, you know, if we were having a discussion today about the LetraZole has had its day kind of thing, your next step would be a CDK46 inhibitor, something like Palbo with full vestrant. So I haven't missed out uh and I am allowed to have that em as my next line of treatment.

But essentially what you're saying is that you've survived all these years, but it's also from the luck in the first place of having a cancer that can have those particular drugs and that have worked for you.

Yes

But you're saying you do feel a sort of survivor's guilt. I do um in the sense that em I've lost so many friends over the years. One of my really close friends, Nina, she died a few years ago now. em And all of the ladies that I met when I was first diagnosed, none of them are here. em And so sometimes people ask me, Why do you do all of this campaigning and this volunteering within the breast cancer world when you're doing so well? Don't you just want to walk away from it all?
And the answer is no, because I can't. Because there are many people, many women, friends who've gone, who've died, who would love to be doing what I'm doing. And I feel duty bound to help change the landscape where I can. em And there's, you know, there's many people you've been involved in campaigning. What drives us to do that? We want to create change and we want the landscape to be better for people who have yet to be diagnosed. And, you know, we want to be counted. We want better access and quicker access to drugs. We want to eliminate a post-code lottery system that exists. We want people to not be in the situation that I certainly was where I knew absolutely nothing about the red flag signs and symptoms of metastatic breast cancer. And of course, we have our Amazing. Late Jo Taylor to thank for the red flag signs and symptoms that she developed, the infographics, because that does make me still feel quite angry that I had had two episodes of primary breast cancer and at no point was it ever discussed with me that there would be the slightest possibility of ever having another problem.

Yeah. And that's one of the big things that breast cancer now is looking to do going forward in terms of every person who has had a primary breast cancer diagnosis should know the signs and symptoms of secondary breast cancer and should be aware and know what to look out for. So hopefully that's something that is changing is going to change lots.

And Jo's passion and her life's work was part was about that. And it's that sense of, you know, the infographics that Jo produced. they undoubtedly have saved people's lives because people will have gone sooner, not sat on symptoms that like I did that I didn't know were symptoms m and present earlier because we know that with cancer, the earlier we access treatment and receive a diagnosis and the sooner we're on treatment, the better our chances of longer survival. em So the work that Joe did as a pioneer em in terms of awareness, advocacy, pushing for change. In fact, demanding change is her greatest legacy. um And that's where I'm at currently.

Well, this is what I was going to ask you. So Joe Taylor is, was your friend who founded MetUp UK, which is a fantastic breast cancer, metastatic breast cancer advocacy group. em Joe obviously sadly died last year in 2025. but you were recently appointed as chair of the charity. So tell us a bit about MetUp UK and what the organisation does.

So we are the only UK based patient advocacy group that is totally led by volunteers. So a non-salaried team uh and very small in comparison to, well certainly obviously to Breast Cancer Now, uh but with a very loud voice. present on NICE approval panels, SMC panels, really a group of people that are passionate about trying to create change. So in terms of data collection, currently if somebody dies from metastatic breast cancer, that death is counted, but there is no accurate number of... people living with metastatic breast cancer because the data isn't collected and submitted to the central database as it should be by every trust. So it became mandatory in 2013 for every trust to submit the data to the central cancer data set base for people in that trust with metastatic breast cancer. And it's still not routinely happening. there, you know, we come to the question of how can you provide support and services for a group of the population living with metastatic breast cancer if we don't actually know how many of them there are. And now it's estimated that there's around 65,000 of us. um The number will be higher. But the NAOMI data audit that's going on, that won't capture somebody like me because it's from 2015 onwards.

Oh, it's people diagnosed from 2015 onwards. Okay.
Yeah. And that's one of the things that Joe was fighting for was to get people with metastatic breast cancer counted so that we would know how many people in the country are living with the disease and therefore know how to help those people. What does it mean to you the fact that you're not counted?

It makes me feel like we don't matter. em And there's that whole sense of, so if we don't matter, does that mean, you know, we've got nothing to contribute towards society? em Who cares? We are people with families, with loved ones. We do work. We do contribute to our society. It's that idea of we do matter. Everybody matters. And it really is important that the country has an accurate number of how many of us there are for a whole range of reasons. But one of the things that I was able to do in terms of some campaigning work that I was involved in a few years ago with our local trust, with the support of my MP Rishi Sunak, who when I met him in the treasury, the day that I told him that there was no accurate number of metastatic breast cancer patients was early March 2020. And I had an appointment with him and he apologised for keeping me waiting. He came into the room, not verbatim, but said, I'm really sorry, I was about to sign off a COVID agreement. That went all over my head. when I, and then obviously several weeks later, we know what happened, the whole country went into lockdown. But when I sat and told him that there wasn't any accurate data, so he was chancellor of the Exchequer then, he said, I don't want to appear rude, he said, but I'll get my research team to look into that. He said, because I can't quite, I can't understand what you're saying. He said, because every decision I make as chancellor of the Exchequer is based on data. And it was kind of mind blowing really to him. So he then helped me and supported me locally as my MP to help us get the very first clinical nurse specialist at our trust. So for the first 15 years of being a metastatic breast cancer patient, I didn't have a named CNS.

Which is a specialist nurse essentially that you are assigned once you have a metastatic diagnosis.

Yes, and there are many parts of the country still that where trusts don't have a CNS. We've now got two, because there's over 200 of us at our trust. And following the appointment of our first CNS, I then set up a support group for us, because that was one of the things that I really would have loved to have had when I was very first diagnosed, because there was zero support. And also we didn't have the social media support that there is now. There was no Instagram. there wasn't the ability to connect in the way that there is now. It's a totally different landscape in terms of how social media can help people when they're feeling very isolated and alone, depending upon where they live in the country.
I've met lots of women who actually don't know one other person within like a 30, 40 mile radius of where they live. em And social media connects. It's a brilliant example of how it can be really helpful.

I don't know anyone near where I live. just, I mostly know people through online actually. And you know, that started with my primary diagnosis in 2012. think that social media for all its faults and there are many faults has really, really helped me to connect with other people. So yeah, that is a really strong positive.

What's the work that you're doing with Meta UK at the moment?

So, I was already a chair, sorry excuse me, was a trustee for the Darker Side of Pink. So um I had responsibility for moving the 31 pink figurines around the country. explain what that Yeah, so again that was one of the visions of Jo of having 31 Perspex figurines touring the country in public places to demonstrate that every single day 31 women die in the UK from metastatic breast cancer. It's a profoundly moving uh display. uh Each perspex figurine has a QR code on the chest that takes somebody to that person's story. My lovely Nina, that was one of my dear friends that died, she took part in the campaign. yeah, it's, I think we're up to 15 now of the 31 women who originally started. I'm included in the campaign as well, so I'm part of the 31, but the campaign started in 2021. So we've lost kind of just under half of the women now. So yeah, that was another really, really key instrumental push from Joe to make sure that the UK starts to sit up and listen and say. There's 31 women dying every day here in the UK of this disease. We're not being counted. There's barriers to drug access. There's bureaucratic systems around drugs being approved. And it's just not good enough. But as an organisation, as a charity now, we're moving forward as a team with Jo's vision and legacy always in our hearts and minds and her voice is in our head as well. And carrying forward. where she left off. And that is one of my greatest privileges and always will be.

And what are the main things that you're doing? What are you fighting for?

So em the calls that we are asking for are the issues that still exist, know, lack of data collection, em barriers geographically, postcode lottery type of situation in accessing drugs em and this equity of access. that all patients matter, irrespective of where you live. It shouldn't matter whether you live in Bournemouth or Birmingham as to how your treatment is given and the experience that you have em and that whole notion of equity.

And from your work with MetUp UK and from your general work, do you get a sense that there's hope for breakthroughs in terms of drugs for metastatic breast cancer?

I do have hope. but also em realistic hope in the sense that we're not just talking about a cure for metastatic breast cancer. It's that umbrella term. And within that, we've got all of those spokes, as it were, within the umbrella of all the different types, subgroups, subtypes of metastatic breast disease. So how far away we are from that. em You know, I have a... a good friend, Dr. Hugo de la Penna, who was a breast cancer oncologist at Southampton Hospital. And he always talks about, know, yes, new drugs are coming through. But they're very harsh and they're unkind and they're toxic to the body. need kinder drugs that help people to live longer and but live well alongside.

Absolutely.

You're very close to the work, you're very close to the approvals process, the behind the scenes fighting, the campaigning. Where do you find hope as a patient yourself? Where do you find the hope to survive for longer, but the hope to be able to help others, the hope for things to improve?

You know, I would never want anybody to be in the situation that I was in when I was first diagnosed, knowing absolutely nothing as a primary breast cancer patient about the impact of metastatic disease. And, you know, this idea of support, quick and early diagnosis, there's the hope that the systems that the NHS works within uh are tightened up and work more cohesively and effectively. And without lobbying and campaigning, nothing is ever going to change. it's trying to, the hope is part of helping to influence change. And of course, I'm little minnow amongst thousands of people across the country who are campaigning for all kinds of different things. But in MetupUK, we've all got that same vision. We're patients who want better outcomes for patients like ourselves and for us as well. And nobody understands it better than patients ourselves. And actually the work that you're doing with Meta UK is incredible. The work that Jo did, her legacy is absolutely phenomenal. And yeah, it's really, really important work. So thank you on behalf of all the other patients for doing what you're doing. Well, thank you.

Thank you. Cause I know the work that you're involved in as well.

Thank you. And you said at the beginning that you will never say that you're grateful for having cancer. Can you explain what you mean by that?

It's just a statement that really puts the hairs on the back of my neck standing up. You know, cancer happens to be my challenge. um There are lots of people in life who have different kinds of challenges that I've never experienced. um But cancer is a brutal disease and I will never be grateful that it came into my life. I am, of course, filled with gratitude every day that I have lived as long as I have. But The idea of saying that I'm grateful that cancer came into my life just does not sit well with me. It has impacted everything, every aspect of my life, my career, my family life, my children. And yes, let's be frank, I've been very fortunate. I had two children before the breast cancer happened. That's another topic, but it's an area as well that I'm grateful for. the idea of saying I didn't need cancer to come into my life to be grateful for my life.

Oh yeah, absolutely.

It just doesn't sit well with me at all. And everybody has a different approach to this. But for me personally, it really doesn't sit well.

When you were first diagnosed with breast cancer, so before the metastatic cancer, your kids were three years old and six months old and they're now both adults. So many people in this community don't get to see. their kids grow up, sadly. How has cancer affected your relationship with your kids and how has it affected them and how have you got through it together?

So um when I was first diagnosed with metastatic breast cancer, em a very close friend of our son, Jack, his mum died and a close friend of my daughter, her mum died of breast cancer. em They were exposed to the wrath of cancer from a very early age. And in the early days, they weren't aware about the nature of metastatic breast cancer because we didn't share that with them. That was our personal choice. Everybody will decide how they best tell their children and what age. But in their early teen years, they became very aware that I was doing exceptionally well. And em we talked more openly about it from their early teens. It's made them very, very appreciative of life. And it's made them make the most of what gifts and skills and talents they've got. And it's made them very understanding of how fortunate they are to still have me. They've seen firsthand some of their friends who've lost their parents. and know the impact that that's had. So they are very grateful too. And I think it's made them from a very early age as well, know and be aware about the fragility of life. Tomorrow is guaranteed for nobody. em And to come back to my mindfulness work, that's the focus of what I'm trying to share with people is that so many of us, different experiences, backgrounds, walk of life. We waste so much time worrying about the small stuff and how can we be more present and enjoy the time that we have. em And that again, you know, if we come back to the surviving girls, that really sits heavily with me that so many of my friends em died when the children were very young. em I have had so much more time than I ever, ever, ever thought I was going to have. And our daughter gets married at Christmas. ah

Wow. Congratulations.

So um that is something really quite incredible. I never in my wildest dreams ever thought that I would see my daughter get married.

Yeah. Yeah, of course. Because she was so young.

And if you'd have known 19 years ago almost that you were diagnosed, If you'd have known that you'd still be here in 2026, how do you think you would have done life differently?
If you would have done life differently?

um I would say I would have tried to worry less, but that's really difficult to do. m I wouldn't change anything about my life. em I just think that if I think of the times where my mental well-being was really poor, I would have liked to have known if I'd had a crystal ball that things are actually going to evolve in a way that you couldn't possibly imagine now. And perhaps I would have liked to have been able to visualise a future more with me in it. uh And that's something that I've had support with from Dr. Annie Hickox, this idea that visualising yourself in the future. is a very powerful thing. Nobody's saying that that's the answer to beating cancer, of course not. But to actually be able to look forward to the, with optimistic hope that you might be there. em And of course that's balanced with the reality of the disease as well.

What would you say to someone who's recently been diagnosed with stage four breast cancer?

To be as informed as you can to not go down the rabbit hole of the internet, to use reliable sources, to ask questions, to be an advocate for themselves, their own patient advocate, em to find their voice, to ask when they don't understand and to push when the answer might be no. I spent hundreds and hundreds of hours looking for cues for cancer that don't exist. And I could have been out in the fresh air walking with my children.

Yeah. To finish the episode with the question we ask everyone, what's the one thing you'd like people to take away from this episode?

I think if it's somebody listening that is a metastatic breast cancer patient or an early primary breast cancer patient to advocate for yourself, to be as informed as you can be, but to be able to be in the present if you can and to just allow yourself kindness and compassion and to understand that this is really something quite challenging and serious in your life and maybe to perhaps look at making some adjustments to your life that might mean, if it's possible, a little bit less stress, making some adjustments regarding food that you eat, making sure you've got a more balanced, perhaps healthy diet. But again, having said that, lots of people have been super fit, couldn't have a better balanced diet and they still develop breast cancer. um just having a balanced view on what is out there. and what they can access, knowing what the treatment lines are, etcetera. um And advocating for themselves in a way, if they are a patient, that means that it's a shared relationship with their oncologist and them as a patient. And that if they are not happy with their oncologist, that they are allowed to switch and change.

Yeah, that's really good advice.

And if anyone is interested in Metup UK, the work that you do or perhaps joining, the campaigns and helping with some of work that you do, which director would you point them in?

So there is the contact email address on the MetupK website and um you'll be welcomed with open arms because we do need more volunteers.

And we'll put that on the link in the show notes as well.

Brilliant. Laura, thank you so much for joining us.

Thank you for having me.

If you enjoyed this episode of the Breast Cancer Now podcast, make sure to subscribe on Apple podcasts, Spotify or wherever you get your podcasts. Please also leave us a rating or review on Apple podcasts and perhaps recommend it to someone you think would find it helpful. The more people we can reach, the more we can get Breast Cancer Now's vital resources to those who need them. You can find support and information on our website, BreastCancerNow.org and you can follow Breast Cancer Now on social media at Breast Cancer Now. All the links mentioned in this episode are listed in the show notes in your podcast app. Thank you for listening to the Breast Cancer Now podcast.