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I then got the confirmation that my breast cancer had spread to my bones and was now metastatic or incurable.

I had no idea that was coming. So, you know, it was the dreadful shock all over again. I have no idea what I said. In fact, I think I said, I dread those things about what do you say to someone who's diagnosed and what don't you say? And this thing sort of flashed through me and I said, what can we do? And that was all I could say. Nothing we could do really. Um,

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 one I know very well indeed. It's my own mum, Christine Price. I've talked about my own breast cancer on this podcast many times, but what I haven't talked about is how it affects the whole family. especially my mum and particularly because our family history with breast cancer goes back much further than me. My maternal grandmother was diagnosed with breast cancer very young and she sadly died when my mum was 18. Several decades later I was diagnosed with breast cancer myself and eventually we found out we have a gene fault that increases our chances of getting breast cancer. My mum's sister, my auntie, also had breast cancer and died a few years ago. So my mum is here to talk about the PALB2 gene mutation, losing a parent to cancer and what it's like when your mother, your sister and your daughter are diagnosed with breast cancer. Mum, welcome to the podcast.

Thank you for having me, Laura.

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? Well, as you know, we've traveled a lot over our lives, been to lots of places where you've lived in Brazil and Argentina. I think what's left on the list that's not too far away, I doubt we'll get to New Zealand, will be Alaska, which would be very nice. Wow, that would be amazing.

That's up there.

And also very tempting right now because it's very hot in the UK while we're recording this, so Alaska would probably be cooler. And complete the sentence. I will never... Camp again. We did a charity camping and marathon walk earlier in the year and it was, how would you describe it? The camping is really still at the forefront of my mind. It was absolutely awful in our little tent filled with all our belongings because it was pouring with rain outside. We seemed to run out of air so I panicked and couldn't breathe and I think three in the morning we gave up. and got ready for the trek.

it wasn't the best experience, but we lost, we raised a lot of money. We raised loads of money. charities.

We did, we did. All right, let's start at the beginning. So you were very young when your mum was diagnosed with breast cancer in the 1960s. What do you remember from that time?

So she was diagnosed when I was 12. It would have been 1964. And she was 37. To answer that question, have to go back to when I was six because when I was six, my sister and I were sat down in the front room of our little house by our parents and they told us they were getting divorced, which was a shock. And Heather was nearly five years older than me.

Heather is your sister.

Heather is my sister. Your auntie. And she cried. So I didn't really understand it, but I cried. And from there, My mum and my sister moved out into a flat in Marlott up the road and I stayed with my dad in the house and I used to see my mother at that time on the weekend and had the used to come and see our dad. I vividly remember that time being six when we were told about the divorce but when I was told about my mum having cancer at 12 I have no memory, no recollection of when or how I was told. And thinking about it, I think it must have been by letter because we didn't phone up, but we wrote letters all the time. You could post a letter in the evening and it would be there next day. And then you would reply. So we wrote lots of letters and I think that's how she must have told me looking back. But it somehow just infiltrated itself to me. So I knew about it, but the memory of being told is there isn't one. I do remember when I was about 13 and Heather and I, my mum, went on holiday, think it might have been to Cornwall, and it was hot and Heather and I were swimming in the sea and I tried to get my mum to come in and she was saying, no, no, I can't. And then she sort of acknowledged that she'd had an operation, which I think I knew about, but I don't think it had really sunk in because I hadn't, I didn't live with her and I wasn't aware of all of the situation evolving and when things were happening.

And did Heather explain it to you later in your life? Did she remember more about that time?

Yeah

Because she was living with your mum.

And she was five years older.
Yeah.

So yeah, she remembers a lot.

So what did she, what did Heather tell you about your mum's diagnosis? So your mum was 37, your mum Hetty, who my middle name is named after. So she was 37 when she was diagnosed. She had surgery. Did she, was she able to have any other treatment?

Yeah. So she had surgery first. That was a radical mastectomy. And then she had radiotherapy and there, as you know, localised treatments that work very well, but they don't prevent it from coming back. And there was no chemotherapy at no chemotherapy. I think chemotherapy was probably in its infancy. It was there, but I don't think it was routinely used for breast cancer. And she definitely did not have it. We didn't even know about it, I don't think. So that was her treatment at the time. Heather, my sister can't remember what drugs she had, but we, I do remember her partner, my mom's partner telling me that at the outset she was given six months to live.

Her first diagnosis?

first diagnosis, yes. And she lived six years. She had very bad osteoporosis, so it was very painful. She fell and she fractured her pelvis. And then 18 months before she died, she had her pituitary gland removed. And that did give her 18 months that she probably wouldn't have otherwise had. That's about as much as I know. And that's probably what Heather knows and can remember, because that was what was relayed to me.

You don't remember any information about the cancer coming back or spreading or what happened in the later stages of her life?

I don't remember when it happened or being told. My nanny, my mom's mom, spoke to me. I'm pretty sure that she was open about it, but I don't have much recollection of conversations.

And she died when she was what, 42?

43.

43, and I'm 43 now.

Yes.

So to think that, she was my age now when she died is kind of crazy. I mean, even the fact that she survived for six years back then without having chemotherapy is pretty amazing. Although she did have the surgery. But you were 18 then. So you were an adult, more or less, very young adult. What do you remember from from her dying or from around that time?

I think I was quite an immature 18 year old and I had my life where we lived. And I did go and see her, but I regret that I didn't.

Didn't spend much time

Yeah to see her more when I could have, but I think, you know, sometimes teenagers are a bit selfish, aren't they? And think of their own lives. I think I always thought, you know, as we always do, there's the rest of your lives.

Did you know that she was dying though?

Well, I knew when she was very ill. My mum was always very slim and I remember seeing her when she was really, really thin. And then I remember seeing her, which I think was later on. and she ballooned up and I believe, I'm told that was steroids.

Yeah, probably.

That was later on. I remember seeing her once in the flat, which must have been towards the end when she was in a dark room in bed. Other than that, you know, I mean, I was seeing her, but I don't think I was seeing her much more than certainly not any more than once a month, probably less than that. So it was, you know, obviously, you you lose your mum at 18 and it's, I remember being very upset and so on, but I think the grief comes later.

Yeah.

I think it's simply when you realise when you're a bit older, that you're not gonna see that person again, that they've lost years that they should have had, and the times that you should have had together, which would have been great. And she didn't live to see her four grandchildren, she would have been a wonderful grandma. So that's all very sad.

Yeah

I think a lot about her. I think more in recent times because of... what's happened in our family. But you know, it's grasp the moment when you can, isn't it?

Yeah.

You learn.

And I mean, I've never heard any of this detail from you before. Sometimes it takes inviting you onto a podcast to talk about it. But I obviously never met her because I was not born and you were so young. But what do you remember from what she was like as a personality?

I have some really good memories. have memories of being A lovely pretty woman, very dark haired, lots of dark hair, laughing funny. Really lovely woman, really, really pretty and really joyful. And I do have some good memories. She was a really good cook, very homely cook. She was wonderful at knitting and sewing, taught me to knit and sew in her fashion. Made all our clothes, you know, from our... scratchy socks to our coats to our really nice jumpers and dresses and things. And she worked as well. Yeah, she's a lovely, lovely woman and you would have. Got on well.

And you named my you named me sort of after her, my middle name.

Well, I did. And her partner, Bernard, at the time, all the time since she left my dad, who was just so emotional when You've got her name.

Oh, right. Yeah, it's funny. I remember him because he survived for quite a long time.

He went into his nineties.

Yeah, I remember him when I was growing up. So he was sort of another granddad figure. I grew up with lots of grandparents and step grandparents. And yeah, I really remember Bernard and I remember that my grandmother Hettie was an ice skater.

Yes, absolutely.

Yeah. Really into her skating.

Yeah. Well, her and Bernard were ice skating partners. She's was a really good skater.

Let's move on to what you knew and thought about breast cancer from your mother having had it in her thirties. Because I know I grew up with this knowledge. mean, I guess there's a lot about a lot. We like many families, there's a lot of stuff we don't talk about kind of personal things. So you get things in your head. I knew all the time when I was growing up that your mom had died when you were 18. And so I always had this thing in my head. that you could die when I was 18 or before it. Don't know if I've ever told you that, but I remember turning 18 and being like, it's okay, I'm safe now, which is a, yeah, it's a funny thing to think back on.

It's such a strange thing because I don't know if I've told you this, but Heather and I both grew up thinking that if we made it to 43, and we thought this independently, if we made it to 43, we'd be all right.

Wow. Because that's when our mum died. And we didn't mention it to each other until some later stage when we'd both gone past 43 and didn't know that the other one had thought it.

And it is a total coincidence that I'm 43 today.

I know it is. I know it is. And I'm really sorry whether I should even have mentioned that, but we can't help the fact that she died at 43.

It's a fact, isn't it? I'm going to touch wood, but I've only got, I've got 29 days until I'm 44. So I'm hoping that we're all right on that.

And Heather and I got well beyond 43.

Yes, you did. Yeah, just tell me about, so you obviously both had that fear or knowledge in the back of your mind that this could hit you. And I think we're in an age now where we've got podcasts and we all talk about stuff more. And I know you listen to this podcast and you probably hear me talking about things that I don't talk to you about in person. Did you grow up like, did you know to check yourself? Did you know the signs and symptoms of breast cancer? Did you, was it a kind of thing that was often on your mind?

I don't think it was out there as much as it is now to check yourself. I think all I really knew about was a breast lump. If you get breast cancers because you found a lump, I didn't know any more than that really. So I think I did, but I didn't really know. I don't think it was just about that you should check more carefully and so on. And it was a bit haphazard, but I'm sure Heather and I both did.

Yeah.

Yeah. I mean, I think that's been until very recent that people have... I mean, a lot of people still do think that you have to have a lump to have breast cancer. And of course, now there are lots of campaigns with breast cancer now and with Coppafeel talking about all the different signs and symptoms you can have. know, it's, it could be in your armpit. You can have swelling, can have discolouration, you could have leakage. are skin puckering. There are so many different signs and symptoms, but yeah, lump is the one that we always sort of have in mind.

So we're skipping forward a few decades now. You've had a daughter and a son. I'm 29. So we're going back to 2012 and I went to live in Argentina. So I was living on the other side of the world from you. was 29 and I found a lump in my breast in the January and I went to have a mammogram and an ultrasound in a hospital in Argentina. And I have to say, as soon as I found that lump, I thought breast cancer. I know a lot of people say, oh, I thought it would never happen to me and they find a lump and think, oh, it definitely won't be cancer. For me, as soon as I found a lump, I thought definitely breast cancer because, you know, I'd had my grandmother had had it in her thirties and I knew that even though I didn't know many details. So I went straight away to get it checked out and I had this mammogram and ultrasound and the doctor there in Argentina said, It's 99 % certain that it's a fibroadenoma. It should go away on its own within three months, but if it doesn't, you could always go back. He didn't say definitely go back, but he said, you can come back in three months. And that's when I contacted you. So I didn't tell you, I didn't want to worry you and say, I found a lump in my breast because I thought you would automatically think breast cancer. So a few months after finding that lump and being told it was a fibroadenoma, I then moved to Ireland as you do. and very much encouraged by you. I went back to the GP, almost didn't go to the GP in Ireland because they told me it would cost 60 euros to see the GP in Dublin and in the UK we don't have to pay to go and see the GP. So I was like, oh, I'm not going to pay 60 euros to be told again what I've just been told, which is that it's a fibroadenoma, but it hadn't gone away. So I did go back. Thanks very much to you for encouraging me to go back and get it checked out again. I was told the same again, that it's probably nothing, probably not cancer, but we'll refer you to the hospital to get some tests. Then I waited, I think four weeks. I know it's different in the UK. There's the two week pathway. I don't know how it is in Ireland now, but this was 2012. So I waited four weeks. Then I had a hospital consultation. They said the same again, it's probably nothing, but we'll put you through for tests, but non-urgent tests because they didn't think it was anything to worry about. And then it was, think a six week wait. And then I had the mammogram and the ultrasound again. And that's when they said, okay, we're just going to do a biopsy just to make sure. And then, and then they pulled me in for a biopsy, a core biopsy, which is where they put the big needle in to check the lump. And then they said, you'll get your results in a week. And during that week, I didn't worry at all because I thought I've been told by so many people that it's nothing. So I really didn't think it was going to be cancer then. I remember I did, I think, 8K run that week and I was really active doing all sorts of things. And then I went back on the Friday in June 2012 and that's when they said it was cancer. And I remember calling you shortly after finding out that news. What do you remember from then?

I remember more of that day because you told me about the appointment that day for your results. And I didn't think it would be breast cancer either. know, again, they'd said they expected it to be a cyst of fibroadenoma. So I wasn't expecting that at all. But I was expecting to hear from you. I think your appointment had been late morning or something and I expected a message to say, yeah, everything's fine. And I didn't get a message. And I was at home. Your dad was away in Brazil working. coincidence. By coincidence, yes. And I didn't get this call from you or a message from you. So I messaged to say, everything OK? I was getting worried by then. Still didn't think it was going to be breast cancer, but I was getting worried that it was something more serious because she hadn't called. And then eventually you rang me and you told me, which was a dreadful shock. Just weren't expecting that at all. I have no idea. I think I asked you to explain what they'd said and we tried that.

I remember I said, it's cancer and you said, is it malignant?

Did I?

Yeah. And I said, yeah, that's what cancer is.

I think, yeah,

I think because you were just confused.

Then I think from there it was all systems go because it was, it was urgent that you got surgery. And you were in Ireland, you weren't on the NHS. So it was a question of, I think I got on with some practical things, phoning the Christie. getting you booked in for surgery. You'd already got some scans booked in. In Ireland the following week, a bone scan, the CT scan, which I went with you.

Yeah, so you were amazing then. You definitely kicked into action mode and I think you did lots of the breaking the news. Do you remember, so my dad was away. You told him over the phone?

I did. I thought about whether to ring him. And I thought that if it had been me that was away, I would want to know whether that's the same with somebody else, but I did ring him. Um, and I think I rang Philip, your brother that day. don't think I probably rang anybody else that day. was all geared up to try and get things moving with booked in my flight to Dublin and getting things organised with the hospital. So you flew over to Dublin and actually, because we are who we are, we did a rooftop German techno exercise class at the company where I was working at the time. Very active. didn't, I don't think I felt, I didn't feel like I had cancer. was, you know, I felt physically fit and healthy. But there was the worry in my mind that I'd found the lump four months earlier and that had been quite delayed. So I definitely did feel that urgency to have a surgery. But what happened basically over the next six to eight months is I moved back in with you in Huddersfield so that I could go transferred to the hospital in Manchester, basically moved back in with my parents at 29 turning 30, started having chemo just after my 30th birthday. I think we delayed it by a week. I was turning 30, you were turning 60. So we had your 60th celebrations just after I lost all my hair. I remember I was wearing a wig and I was basically a child again, cause you and my dad took me to all the appointments, came to chemo with me every time. and came to all the consultations and everything, went through everything with me, I think. What was that like for you having your 30 year old daughter back at home again and looking after me?

I think we were a bit like a sealed unit. We just wanted to do what we could for you in a practical way, which we did do. You know, I remember getting up, having a little book. I've still got the little book. of things that needed doing, practical things, like had to be up into your room at half past six with your steroids and some ginger biscuits to eat with them or something like that. And just, I think the practical things you can do and help with, what was the really hardest bit was the support in a mental and emotional way, which I don't think we very good at.

You were.

Still not very good at. But yeah, think we did do things. You did, You did have friends around to see you. I think you had a couple of people that came to stay, but largely we were very, scared about infection. Anywhere we went, we were worried about somebody in the queue, the supermarket that coughed and anything like that. We were just so worried about when you're on chemotherapy and it was strong for you. We couldn't take a cough or a cold home. So they were concerns.

Yeah, I remember starting to use hand gel at that time. And this was long before the pandemic. I've been paranoid about germs ever since then, since 2012, when they warn you so strongly that you're susceptible to any kind of, you know, people's coughs and colds and it could really affect you. So I've always been germ phobic since then, I think.
I do remember it was during the 2012 Summer Olympics. And I remember us watching some of the races on the TV in the hospital whilst I was having chemo. I particularly remember, don't know if it was my first chemo when we were watching the Brownlee brothers in the triathlon. Is it the triathlon that they won? These Yorkshire brothers anyway, they got gold in the 2012 Olympics. I remember it being so emotional because the three of us were there, just the chemo's dripping into my arm and we're watching. Do you remember that?

I do. And Philip was once mistaken for a Brownlee brother.

Oh, was he

Yes, because he was a cyclist and looked a bit like them. Yeah, yeah, I do remember that because the I think you actually went to one of the events and then later, yeah, the day before your second chemotherapy treatment, you went to the Paralympics. Yeah. And Dad and I were just out of our minds trying to talk you out of it because we didn't want you going.

Being prone to infection and being on your own. we thought you'd. strong enough and but you went and you came back the same day. Yeah I went to see Ellie Simmons the swimmer in and she won gold I think and that was one of the most emotional amazing things I've ever seen so I'm very glad that I did go to London I sold some of my tickets though so yeah.
So over the next 10 years we're going to skip forward a decade again over the next 10 years I was given the all-clear pretty much as soon as I as I have my surgery and I went away got a new job did lots of traveling both with work and not with work, moved back out of home after those six months with you, I think. And I think there was always for me in the back of my mind, this fear slash idea that the cancer could come back any point. I think also because I made friends with quite a lot of people in the community, partly through Coppafeel, the charity, and I did know people whose cancer came back. after getting it really young and some of them died and you know, so it's always present in your mind. what was that, did you also have that fear? What was that period like for you?

I think I was still a bit naive, but I did have more fear than I used to have. I do remember, I think it was 2013 and you were home after you'd had radiotherapy and I'd read a book that a girl called Lisa Lynch had written. Yes, the C word I think it was called. Yeah, she had cancer very young. taken this book back to you in your bedroom and you said to me, you know, she's died, don't you? think at 28 or 30. And I didn't know. And that was a shock and it brings it home to you that these things can and do happen. And I knew about your involvement with Chris and Mara and hallenga and their stories. And Coppafeel was great because you made friends there that were young like you and had similar illness to you. But I think I probably was still naive about it, or whether I was just heading this hand, I don't know. I didn't think it would come back. I really didn't think it would come back. I never was scared. I know now, but I don't think I was scared then, you this could return. But that was before, it was before my sister was diagnosed and it was before we knew about the gene mutation.

Yes. Well, we'll talk about your sister in a moment, but did it also make, did my having breast cancer When I was 29, you were 59. Did that make you more vigilant of breast health as well for you? Did it make you worried about, and did you also change?
Were you having mammograms then?

I was having mammograms then. And you used to remind me, know, make sure you're going for your mammograms. They were every three years, so not that, luckily that was fine at that stage. I was a bit more vigilant, but I think I was just one of those that you've had cancer, you've been treated. you're good and you're well, you know, we're getting on with our lives. Sounds a bit like that.
A few years after my diagnosis, your sister Heather, my auntie, was diagnosed with breast cancer, but she had triple negative breast cancer, which is a different kind. So my breast cancer is oestrogen fed, HER2 negative. Hers was triple negative, which means that she couldn't have any of the oestrogen suppressing drugs, for example, that I had or the HER2 suppressing drugs that a lot of people have. Tell us about Heather's diagnosis and how old was she?

Heather was 67. It was March 2015 when she phoned me and we had a long conversation because sometimes you don't know what to say. It's all such a shock and you call back. But we had a long conversation at the time. It was another of those, oh no, it can't be moments. But we had a long talk. She was 67 and she did explain quite a lot of it to me. I think she'd known for a little while because she was relatively calm and I know her chemotherapy started only about five days after that. So she'd probably known a couple of weeks. Sorry, no, she had chemotherapy first.

Yeah.

Yeah. And she obviously, three years earlier, I'd gone through all my treatments. So she knew that you knew quite a lot about it. And she would have, I guess she would have immediately related it to the fact that I'd. had breast cancer as well.

Yeah, think Heather and I had a lot of chats when you were having treatment. She was really, really supportive. And so she was very much involved in what was going on with you. And so knew a lot more by that stage. I remember saying to you, we did wonder if it was connected to yours and my mum. And you saying, well, she's 67, it's triple negative, it's different. Whereas not many people get breast cancer at 29, quite a lot do in their late sixties. So it could just be that it's not related at all.

And for context, so in 2012, when I got my diagnosis, we had the BRCA, sorry, I had the BRCA gene test. So we went for genetic counselling. We learned about the possibility that your mother could have... passed down, could have had a gene mutation because it was very, very, very rare in the sixties for someone to get cancer in their breast cancer in their thirties. It was still very rare in 2012, but it was even rarer in the sixties. So there was, we thought there was a good possibility that we had the BRCA gene mutation, but I had the test in 2012 and we found out that it was negative. So you didn't have the test cause it was thought that we didn't have that, but they did say to us at the time. there may be more genes we can test for in future. So we went away and then by the time Heather was diagnosed in 2015, we thought, well, it's probably not connected because we don't have the BRCA gene mutation.
So we'll come back to that in a moment. Just on Heather. So I remember Heather died very sadly in 2020 during the pandemic, but it wasn't the breast cancer that came back as far as we understand.

No, that's correct. So after her treatment she was well for four years, so getting on for four years. In 2019 she was diagnosed with a, she actually sent me a message about this one. So must have been very hard to talk about. She sent me a text or an email to say that she'd been diagnosed with a brain tumour. And then when we spoke about it, it was a glioblastoma, which is very, very rarely connected with breast cancer. It wasn't. I'm pretty sure it wasn't a spread from the original breast cancer. was something that comes as a primary. Very awful thing. People generally don't live more than a year or so with it.

So skipping forward just two years after COVID. we're now in 2022. I got my first diagnosis in 2012. In 2022, well actually towards the end of 2021, I started to get pain around my sternum bone. which I suspected immediately was that the cancer had spread to my bone, but I got, didn't really quite get the right tests initially. But then skipping forward to June 2020, sorry, July 2022, I then got the confirmation that my breast cancer had spread to my bones and was now metastatic or incurable. I do remember calling you that. evening to tell you, I don't think I told you that I was having all the tests. I think you knew that I had this pain, but I don't think I've fully told you. But I do remember calling you that evening and you and my dad were going out for dinner and I told you. And you, yeah, do you wanna say how that felt when you heard that news?

Again, you know, I think I'm just so naive, but I wasn't expecting it to be, I hadn't detected anything in you. I had no idea that was coming. So, you know, it was the dreadful shock all over again. I have no idea what I said. In fact, I think I said I dread those things about what do you say to someone who's diagnosed and what don't you say? And this thing sort of flashed through me and I said, what can what can we do? And that was all I could say. Nothing we could do really.
But yeah, that was just a shocking shock because, you know, then when it's come back, it's It's secondary and it's bad, isn't it?

Yeah. And I think, I'm trying to think what I remember from that. I think I had to really psych myself up to call the people that I called that day, which was, you know, just a very small handful of people. But I do remember that you and my dad were going out for dinner and I thought, oh, they'll definitely stay home now after this news, but you went out for dinner anyway, didn't you?

We did

Purely because you're a people pleaser like me and you don't want to let people down so you didn't want to cancel your dinner appointment.

And I don't think we told the people that we... It was our good friends, you know, our good friends that we always used to go out for dinner with. I don't know how we got through it. I honestly don't know. I think we must have just for a couple of hours compartmentalised it for a short while and then come back. But also it's such a shock that you're not really... You know, you're not dealing with it, are you? Until later, these things come to you afterwards, don't they?

I remember what my dad said. I don't really remember what you said. think you were maybe a bit more practical, but I do remember my dad came on the phone and he said something like, you'll be fine. You're going to, he didn't say you're going to beat this, but he said something like, you are going to get through this, I think. And I just said, yeah, yeah, I know. Even though I knew that that wasn't the case, I knew that it was just a sort of kidding yourself thing. But that's what he needed to say in that moment. so I just said, yeah, yeah, yeah. So it'll all be fine. Thinking, no, it won't be at all. But now four years later, it's, we're, day after tomorrow is my four year anniversary of that day. Of course, all the coincidences, and we didn't organise this podcast around those days, but it's turned out that way. Yeah, four years to that day and I am fine. Like, yes, I still have metastatic breast cancer, but. I'm and I will always will have and I will always be on the drugs, but I'm living an amazing life. I really didn't think at that point, I really thought, you know, the statistics were very bleak. The prognosis was very bleak, even though my oncologist had been really, really hopeful with me and said, you know, there's a good chance that you'll live a long time and those sorts of things. But I knew so much, I think from knowing people like Chris Halenga, who founded Coffafeel and knowing. of so many people for whom it had spread, I think I was pessimistic probably. my mind, I just realistic, I think. I've always been realistic about these things. I would never think, oh, I'm gonna be cured because that's not, that just doesn't happen. But now, the way I am now, know, doing this podcast, working, going on holidays, you know, being able to travel again, all of those things and living a reasonably good life despite all. all of the side effects, I feel much, much more optimistic than I did then.
What about you?

I think at the time I was actually quite angry when people were just lovely, but telling people and I'd heard of these statistics as well that you were quoted and I was just angry that it just shouldn't be. I think dad's words would have been because he was convincing himself you're going to be fine.

Yeah, of course.

Which was a good thing to do. don't think anger lasted. It was then a case of dealing with it. But I like you. think by that point, I was much more realistic. know, I know it's there and and you can't get rid of it. But it but it is you went through that awful surgery. That was a really terrible time. All that pain and everything and the emotion afterwards of not being able to exercise, not being able to work and all those things that really get you down. That upset me. But you were told that you'd probably not be able to swim again. You were a great swimmer. But you I actually wasn't.

I probably exaggerated that. They said I wouldn't be able to do front crawl quite as I did it before. wasn't that you'd never be able to swim again.

No, not as well. But yeah, you can and you can do everything that you've always done really. I think it's a question of getting on with your life. we see that you get on with your life. And so we do with ours.

Yeah. I think maybe with chemo when I was 29 and with the treatment that I have gone through from 39 onwards and with the surgery and things,

You having a mother who had been through this, a sister who had been through this and now a daughter going through all of this?

Twice.

twice. How did that, how does that make you feel as the person who hasn't had cancer?

Um. Well in terms of you, guilty because I'd much rather it been me.

Sorry, I'm asking you all these emotional questions.

But you know, that's natural, isn't it? You shouldn't be your daughter. But yeah, we know the reason, don't we, with the mutated gene. It's awful for my mum going so young, it's awful for my sister. And what you've had to go through is awful, but you you're living a great life.

But maybe the order of things is because you're such a practical, capable, positive person and you've been, you know, maybe your role was always to be the person who can do all the support and all the cooking, delicious, healthy soups.

When you first were diagnosed and you were home and I bought this book called something like Healthy Eating Whilst on Chemotherapy or something. I used to make loads of this soup, veggie this soup, you must have been sick to death of it. But yeah, it's just something that you can do that you think might help, whether it does or not. It's just any little thing, isn't it?

Yeah, and I think those practical things are the most important thing. Like, you know, emotional support is of course important, but actually the practical stuff is, you know, lots of people say, what can I do to help you? And actually what you can do to help people is cook for them, give them lifts to hospital appointments, help them administer their medications when they got... 15 million different drugs to take and things like that. And that's exactly what you did.

And you feel like you're doing something.

And you were like, like I could not have got through it without you. I really couldn't.

Let's talk about genes. So in 2012, I had the BRCA test. It came back negative. And then in 2022, when I got my secondary diagnosis or my metastatic diagnosis, one of the oncologists said to me, oh, we can retest your genes and see if they find anything. And they still had the sample that I had given them in 2012. So didn't even need to do a new blood test, which blew my mind. And they went away and on a random hospital appointment where I was getting the results of I was there for something else. The oncologist accidentally read out something, something, something, pal B2 mutation. And I said, what? I didn't have the results of that yet. And basically they just got the results of this PALB2 mutation to say that, yes, they were now able to test for this new mutation, PALB2, which is very similar to BRCA1 and BRCA2, and that I had tested positive for it. And I was like, wow, you know, I was there discussing something else. I was lying on a hospital bed and I'd... I'd had a migraine and I was feeling really awful. And I found out this news, which is like literally what caused my cancer. This was the question that I'd had all my life that linked me most, almost definitely to you and to my grandmother who'd had it in her thirties was such a light bulb moment for me because it, I'd spent my whole, the previous 10 years thinking what did I do? that get why did I get breast cancer when none of my friends got breast cancer? Why, you know, there must be something that was there genetically. so then to find out this was amazing. Like I was happy to find that out apart from, of course, the implications on wider family, but just to know that something that I already thought was was actually true.
How did that feel for you getting that for me getting that news and you obviously assuming that it was passed down from your side of the family?

Well, going back to the BRCA1 and 2 that you were tested for, when that came back negative, I remember the phone call early one morning, you were in your room and you got the call and that you didn't have that mutation and we were just so, so relieved, and I. But I felt that you still thought that there was something else that it could have been inherited.

Yeah

And I don't think I particularly did, you know, I think I thought, right, well, that's really great. You don't have that. And it's not that. I don't think I so much thought that it would be another, although it was mentioned, another mutation. And so when that came, I don't know whether we knew straight away that it was, or was inherited, I think probably I did, and that it had to have come from me or your dad. And you assumed it would be me because of my mum, more likely, and there's no cancer on your dad's side. And I think maybe for you, I felt some relief because you did always want to know why. And you did have that sort of surety, you then?

And did that change anything for you in terms of worrying about yourself? obviously, so skipping forward, you then eventually got a test and it confirmed that you also have the PALB2 mutation, which means that your lifetime risk of breast cancer is also quite high. sorry to keep mentioning your age, but you're in your seventies now and you haven't had breast cancer, thank God. But does it, does it, has it made you extra vigilant? I know you have the annual mammograms now, don't you?

Well, I do. And I have MRIs as well. So I got the diagnosis quite a long time after you. think yours was probably, was it August?

Yeah.

And mine was the following June. It took a long time because they didn't have a blood sample from me. I had to go through, I'd gone through the oncogeneticist. appointment with you where we'd done family trees and all sorts of things and that it was likely that it would be me and so I would be the one to be tested. But then I had then had to have another appointment with a geneticist in Yorkshire and wait for the blood tests and so on and then wait for the results and it was the following June when I got my results and I remember getting them the letter came and I was expecting it to be me. I didn't want it to be a dad. And I was on my way to the station to go on one of those long journeys down to Cornwall to see my step-mom who wasn't well. And I remember just thinking, yeah, well, I've got that confirmation. It was expected. But I was absolutely distraught. When I got to my digs, seven or eight hours later, I just cried and cried and cried. I give you that thing. And there was I at 70 71, fit and well, had a great life. And I've given it to you.

But you hadn't given , It's just genes. Think of all the other great genes you gave me.

Well, it was totally illogical because it was no more my fault than my mother's fault giving it to me. It was just what it evolved. I certainly didn't... I expected it to be me and I would rather it would be me. But it was... When you expect something, it's not the same as having been confirmed.

Yeah. So that was quite bad. But then... You pick yourself up and you did what I was there to do and went to see my stepmother. And then from there, it was a question of having to tell your brother.

Yeah. And interestingly, so we so my brother eventually also got tested probably about two years after that. Quite a long time. He has three daughters. So we were quite worried about that. He very fortunately did not have the a power B2 mutation, which is amazing because it means it stops with me in our family line because I don't have biological children. have stepchildren, so they fortunately don't have it. But as far as we know, my cousins who are the sons of my auntie Heather, who had triple negative breast cancer, we don't think that they've had anything tested yet. So that's still a question mark. So there are potential family implications but... I was advised by the geneticist that we saw together that if I did turn out to be the one that had inherited it and passed it on that I should contact close family and my cousins, my mother had two brothers and it can obviously go down the male line as well, that I should try and contact as many of those that I could and... Fortunately, all the family tree stuff that Heather and I had done was useful because I was able to get in touch with them. And one came back and said that he'd been tested and it was negative, which was great. I haven't heard from the others, but at least they have the information. The fact that your brothers came back negative was just fantastic because the implications are still there for a man that can still get breast cancer, much less of a percentage, but also possibilities of. pancreatic cancer, think prostate cancer. So for him and his wife, that was a worrying time. And then the knock on effect for their daughters that if he'd been positive, they could be and would need screening from a very young age, which can be dangerous. So that was a great relief. And I couldn't possibly pass it to you both.
Yeah. I mean, I totally understand that guilt and sense of blame that you might feel, but I mean, it's literally, it's just having a child, know, no one knows what genes they're going to pass on to their child. And you have to think of all the great genes you passed on to me as well, you know, like there's lots of, there's lots of great stuff. And yeah, we don't know whether Heather's cancer was connected through the gene or not. We'll possibly know. Well, we may know if her sons get tested, but. for now, yeah, but it is possible that she had a PALB2 mutation and that she still had a different type of cancer from me, triple negative. That is still, it doesn't matter the type No, the geneticist did say that because I questioned it thinking that because hers was different to you, it couldn't be the connection with the gene, but apparently it could be.
So we don't know.

So my big question has always been, why did my grandmother and me get breast cancer if you haven't and I don't want you to have. whenever I'm asking that question, I'm really, really glad you haven't had it and I hope you never have to. But it's just a big question like what has happened in our lifestyles that have been different? So we've talked about some potential things. And I know we talked about it with the genetic counsellor at the hospital when I had the BRCA test or when you had the BRCA test, can't remember.

The PALB2 test.

PALB2 test, sorry. Yeah, we've talked about various things. for example, you had your first child when you were 27 and it is thought that if you, it's thought that pregnancy, I believe, can protect you from, that something to do with the oestrogen levels in pregnancy can protect you. So I was told in 2012, very unhelpfully, that if I had had children by that age, 29, I might not have got breast cancer, which was an incredibly unhelpful thing to have been told because I was single. You know, I hadn't had children and I might never have children after that diagnosis that they told me about. And there they were saying, oh, if you had had children, you might not have had breast cancer. So that wasn't great. But so you had had children by the age of 27, which could have been protective on your genes, but there's not that much difference between 27 and 29. So another thing is city living. So by the age of 29, I had lived in big cities for the best part of a decade. Whereas, what was your lifestyle like at that age? Did you?

In my 20s?

Yeah.

I lived in Bristol for some while, about eight years there, but not in the centre. I think in terms of the pregnancy, my mum was only 20 when she had Heather, so she was very young to have a first child. So that sort of discounts that one. Breastfeeding, I suppose, I think he's maybe meant to help there, you have a child youngish and breastfeed. But she was a smoker. She was quite a heavy smoker.

And smoking is big risk factor in breast cancer as well if you have a gene mutation. So it's not that if you smoke you're going to get breast cancer, but if you already have a gene mutation and you're a smoker, yes actually, that would have increased her chances.

Well I'd say all the other things that would have protected her, she did right. So she had her first child very young. She... was a healthy fit person. used to skate and do all sorts of things. She ate well. She cooked home things because we didn't have fast foods then. She was, you know, think she was slim. The only thing I can think that wasn't right was that was the smoking, but it could just be bad luck, couldn't it? We just don't know.

Of course, luck is always a factor. And when I mentioned city living, I'm talking about smoke fumes, toxins, all the big toxins that you can get from living in a big city. Again, it's just a small risk factor, but it is a thing. The other one for me is alcohol. So I did drink quite a lot in my, from my late teens to my late twenties. I always pretended to you that I didn't, but I barely drink anything now, but I definitely did drink quite a lot from quite a young age. Never smoked or anything else, but always. probably quite a lot of alcohol during that time and so I do have a guilt with that.

So did I.

Did you? In your twenties?

17, 18, I used to drink a lot. I think I probably eased off, but I did carry on drinking maybe until I was expecting to get pregnant. So I don't know how we compare there, certainly I did drink. I don't know whether if you're going to mention it, but I think there's the stress level too.

Stress, mean, stress is a big one for me because I feel like I went through a lot of stress with work in my 20s and that, yeah, I've always had my own suspicions that there could have been stress in my life that contributed to the cancer, but everything I've heard since then is that there's no evidence to link stress with breast cancer and in fact, it's not a contributing factor.

Well, that's good then, isn't it?

Yeah, we'll never know.

Since having breast cancer at 29, it's completely changed my, I guess, perspective on life in the sense of, you know, I've always thought life could be short. So whatever I want to do, I'm going to do it now. And that's what drove me through my thirties, I think, and what drives me now in my early forties. Has it had a positive effect on you in a similar way? Would you say?

I think for me and your dad together, we've But we've tried to make sure that we do what we want to do. You you don't know how much time you've got. you, we've always been savers, but we've been careful. But you know, now if we want to have meals out, go on holidays, we'll have as many as we want. We buy what we want.

Within reason.

Within reason, most definitely. And I think we know to do things while we can.

Yes. And what have you learned? about breast cancer over the last few years of having it in our lives?

Oh, I've learned such a lot because I knew virtually nothing. I think all I knew about breast cancer, even though my mother had had it, was that you probably have treatment which makes you sick. You probably lose your hair. It might make you infertile. I knew nothing more than that, really. I've learned such a lot. I've learned a lot from... certainly from these podcasts, all the things I've read, all the things you've been through, still loads that I don't know, I'm sure, but I do know a lot about it now, but this I didn't.

And how has it affected you listening to these podcasts and also reading a lot of the stuff that I've shared online over the years?

The reading has been very emotional, I think, you know, knowing how you felt and it just brings everything back of what there's been and I sometimes come across photos of you when you're in your 20s and carefree and I can't look at those. But I think, yes, the reading is hard. The podcasts, I do find them emotional, but I find them really, really good to listen to. Sometimes I sit and watch and listen. Sometimes I just have them on in the kitchen and then I just listen to it in the background. I've got a lot out of those. I enjoy every one.

Thank you for being such a loyal listener.

Well, they are quite emotional because it's so close to home. They're good to listen to. There's a lot of, I try my best to share hopeful stuff on here as well.

Oh, definitely, definitely.

Yeah.

Yeah. Oh, there always is, you know, the ones I've listened to of the CEO and the two women and, yeah, there's always fun and, know, of joy there as well.

And I know you just said that you looked at the photos of me in my twenties and I was all carefree and joyful and stuff. I actually think I'm more carefree now than I was in my twenties, because in my twenties I was all... career, career, career. I was very serious about, know, I didn't really, I didn't know how to take time off. I didn't know how to rest or relax. I didn't really know the meaning of the word rest in my twenties. It was all about my career and working all the hours. And, you know, I think in the, in the years building up to my breast cancer diagnosis, I was working. 12, 14, 16 hour days a lot of the time. And I really wasn't resting or taking time. Whereas I'm the total opposite of that now. And I obviously still work hard, but I really know how to rest. And I really give myself a break when I need a break. And I think a lot about, know, I really prioritise things like holidays, whether it's, you know, just a day off. work and going for a swim in my local town, know. So, yeah, please don't think that.

I mean, well, that's that's that's very good to hear. I think it's the looking at them and thinking that was that girl that should have had a whole life ahead of her in the way that she'd hoped. And yeah, and that wasn't to be. But I know that you do everything that you get enjoyment from now and really do live a good life with. And you keep in touch with all your friends, old and new and. I have a great life, you don't need worry. Well you're a wonder.

And so my dad has obviously been absolutely amazing throughout everything as well. You've both been so supportive and so there for me over the years.
I know you can't speak entirely for him, but what do think has been his experience of breast cancer with us over the last 14 years?

Well, there's a few things I remember. When you were first diagnosed, there was the question of perhaps freezing your eggs. and it was a really difficult decision to make. We knew, well, we'd been told it would be a dangerous thing to do, or could be, because it would increase the oestrogen, which was not good for you with your cancer. But there was very little time to think about it because you had to get on and have the surgery and then the chemotherapy. And there was no help. We were really in a dilemma with that. But Dad was very clear-headed and said... Well, there's really no point doing that if in doing that, it's probably going to, you know, make you more real and you could die. What's the point in trying to have children when, you know, you might not be there. So exactly. And he really saw that so clearly. And that's, think when you made your decision, I don't know if you remember that, but it was. That's like the most poignant memory probably of, yeah, of like probably the hardest weekend of my life. I would say.

Not him saying that, trying to make that decision. Because actually what they say now is that it is safe to freeze your eggs before chemo if you have an oestrogen sensitive cancer. It's obviously all done in a very controlled manner and it depends on the person and the age and everything. But there are lots and lots of people who do that now. But back then, they didn't necessarily say it was dangerous, but they said we just don't have enough. statistics and evidence to say how it will affect you. And, you know, it's, still was a choice for me, but I think in choosing to have frozen my eggs, I would have to delay chemo and we'd already had a delay to my diagnosis of four months. So I knew that this lump had been there for four months and I just thought, yeah. I was worried about taking longer to go through this egg freezing process and I didn't know until the very last minute what I was going to do, whether I was going to go for it or not. And yeah, it was totally my dad saying that, putting it into perspective and saying, you know, what's the point in trying to make sure you can possibly potentially have a child some many years down the line if if you're not there to look after that child. And yeah, it was that, and I've never regretted making that decision.

Absolutely. I remember that very clearly all the dilemma of that time and him just coming out with that. And it was really clear headed and sensible and the right thing to do. I think. Yeah. And then I remember a few days after you were going back to how he felt a few days after you were diagnosed. And I went out to see our neighbours who we'd known for decades and knew very well and telling them and you know we're all a bit upset and Ian said and how's Tony?

That's my dad,

your dad, and I just said well it's his daughter and they did have kids but you know they knew it shouldn't be your daughter but over time I think we were just talking about this the other day that we don't really dwell on it It's always there, we know it's there, but we don't normally actively worry. We worry when it's scan time.

Yeah, you probably have more scanx-ie-ity than me.

We have a fair bit, I think. It's because you're waiting for the results and you're waiting for the call or the message from you. So that's quite difficult, but that has to be done. We appreciate that that's done. You also know that my track history is not to tell you if there's anything wrong so that you wouldn't know about it until there is bad news.

Well, I don't know, but yeah, we did say together that we don't actively worry really. We don't dwell on it too much. We know it's there. We know it'll be there, but we do largely get on with our lives. And dad talks about it to quite a lot of people. does chat about it and that's good. And I think the more open you are, the easier it is to talk really.

Definitely, yeah. What is the one thing you'd like listeners to take away from this episode?

It's different for everybody, I suppose, isn't it really? think you just deal with it how you can deal with it. I think listening to these things is always good because you get to know more. All of the resources are there now, which weren't there. I remember just wishing that there'd been somebody I could have, a professional person that I could have asked for advice on how I... was with you, how I could help you. Which is there now, isn't it?
All those resources are there now and I think it's maybe being aware that they're there. Asking for help. Asking for help, treatments are kinder, knowing that, a little bit kinder. And just having people that you can now raise absolutely anything with really because all the resources are there, I think they are.

Well thank you so much, I it's been very emotional going through all of these quite traumatic things and diagnoses and things in the past but it's been amazing to have you on and to just share this really personal story so thank you thank you mum for coming on

thank you Laura, for having me

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