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

I've just finished today's chat with Paula, a patient with secondary breast cancer, and Catherine, one of Breast Cancer Now's nurses. We covered all sorts of aspects of Paula's secondary breast cancer experience from diagnosis, talking to her older children, the anxiety that she's had since having her diagnosis, and how going to support groups that Breast Cancer Now offers has really, really helped her to overcome her anxiety and to just talk to people who are going through similar. And then we also had nurse Catherine talking about the various services that Breast Cancer Now offers. So hopefully if you've been diagnosed with secondary breast cancer or with primary breast cancer, you'll find this a useful episode to find out a little bit more about the services that Breast Cancer Now offers and the things that you can get involved with if you've had a breast cancer diagnosis.

Today we're talking about secondary breast cancer with patient Paula Van Santen and Catherine Priestley, one of Breast Cancer Now's nurses. Paula was diagnosed with breast cancer in 2022 after noticing dimpling in her breast. Unfortunately, just two months later, she found out the cancer has spread to her lungs and was treatable, but no longer curable. She's been on treatment for three years now and has fortunately found a lot of comfort in Breast Cancer Now's support services. So we thought we'd to both Catherine and Paula about what services are available and how you too can benefit if you need support. Paula and Catherine, welcome to the podcast.

Hi.

Thank you very much for having us.

Paula, let's start with your story. Could you tell us a bit about your diagnosis, your primary diagnosis and what was happening in your life at that time?

It was just after COVID, 2022 and life was... coming back to life almost, isn't it? It's like you can go out, you can do this, socialising a lot more. Work was on the up. I'd just changed my role within my company that I work with. And it was in the shower. I just noticed a very small dimple in my left breast, almost just underneath my armpit, which got bigger as I lifted my arm. Without lifting my arm, you couldn't really see much. Because I have had breast cancer diagnosis in the family before, I knew to take it seriously. So within half an hour, I phoned the GP, got an appointment for the same day and went down there. She said, obviously, you know, 47, you're still quite young, premenopausal, perimenopausal, it's probably nothing, but let's get you checked. So within two weeks, I got my appointment through, headed up to the hospital for a mammogram and I really wasn't worried because treatment has come on so much. Even if it was the worst that I was expecting, I knew that treatment was likelihood to help me. So I really wasn't worried. I was really optimistic to take everything in my stride. That day, had the mammogram. They found something, took ultrasounds, which led to biopsies. They could clearly see something. And it was two weeks later, I got my diagnosis. Yes, you have multiple lumps in your left breast, this is the plan. I didn't like the plan. Me being stubborn, stick to my guns. I was the plan. The plan was a lumpectomy and then onto chemotherapy and radiotherapy. Something in my gut was telling me, listen to you, listen to yourself. Go for a mastectomy because there were so many little lumps, and some in the lymph nodes, it felt like that the mastectomy was the way to go for me. I'm not saying it's right for everybody. And I would always, always recommend people sourcing help. Breast Cancer Now is absolutely brilliant for that. The oncology department, wherever you are. But mastectomy was right for me. So I had my surgery, they all agreed with me in the end and had my surgery in the June, 2022. Vigorously doing all the exercise sheet that you get after the mastectomy, feeling really good about myself, knowing that this is the end. This is the start of the end. It's the light has started coming through. And then I had a CT scan before they were determining the chemotherapy treatment I was going to have. And the day later I got the diagnosis of secondary breast cancer and it had moved to my lungs and only very small nodules still there and got the news of incurable and my world fell apart. Obviously that was my diagnosis and lots more moved on from there, but that was how I found out about my diagnosis.

When they found the primary breast cancer, had they done a CT scan then and not seen anything in your lungs? So they think it had developed between the scans or had they not scanned previously?

No scans previously. The first CT scan I had was just before the chemotherapy was starting.

Well, so you had the mastectomy and then found that it had already spread. And you say that your world fell apart. How did it feel? In what way did you kind of react?

My initial thought was I needed to escape because we've got three children, albeit adult children. We say children, but they're adult children. The youngest at the time was just sitting her GCSEs. That... Literally while I was having my mastectomy, she was sitting and had GCSEs. And I needed to escape. I didn't want to speak to anybody. I was ignoring telephone calls. I just wanted to be left. I wanted to be in my own head, which is really weird because I'm a very talkative person, as I'm sure you can all figure. But I just needed space. I needed head space. I needed to find my path on how I needed to deal with it, not how the family needed me to deal with it, not how Joe Blog down the street wanted me to deal with it. It was what I needed. So we actually, we went to Bournemouth for the weekend, two nights stay where I could just switch off and be who I needed to be, cry, whatever, whatever that was needed. We hadn't told my daughter because we wanted to tell all the children at the same time and not one know before the others. So we went and she didn't know anything about what was going on.

She was on holiday with you, but she didn't know?

Yeah.

Was it easier in a way to pretend everything was okay?

Yeah, it was a little bit because I had her as a focus, but then I still had the headspace of not being around all my friends or my family and things like that. So it worked for me. It might not work for the next person, but for me, that's what I needed. And that to me, selfishly, that was more important.

And you just reminded me that a couple of days ago, I saw your story about this and about the trip to Bournemouth in the Breast Cancer Now magazine.

Yes, it is.

Which has just come out at the time of recording. Catherine, would you be able to tell us what secondary breast cancer is?

Yeah, sure. So secondary breast cancer is breast cancer that's spread beyond the breast and the lymph nodes underneath the arm to other parts of the body. So that typically is the bones, the liver, the lungs, sometimes the brain as well. It can be in other places as well. So some women experience secondary breast cancer in and around their abdomen, for instance, around their ovaries and their gut. Or some people experience it in their skin as well. But what we know about secondary breast cancer is although we can treat it, and there is lots more treatments than there have ever been before, and still building on those treatments is we know that we still can't cure that. We haven't got to that stage yet.

And what does incurable but treatable mean? Because it's a really hard concept for a lot of us to get our heads around. And some people with second breast cancer could live for 20 years. So it's quite confusing.

It is. So when we give treatment for early breast cancer, for primary breast cancer, then we are giving it with the hopes of removing that breast cancer and reducing the chances of it coming back. We can never say that somebody is cured. that it's never going to come back. But the intent of that treatment is hopefully to cure people. With secondary breast cancer, because it's quite complex, because it's spread, and although you can see or maybe have symptoms of secondary breast cancer in various parts of the body as I've explained, quite often there are other cells that you can't see on your CT scans and that sort of thing. And it's quite difficult to contain in the sense of being able to remove it. and give treatment to then also remove the rest of those cells. The cells tend to change as time goes on, so it gets a little bit more difficult. So we know that we can treat it, and there are some great treatments to keep the cancer under control. For some people, that means that their tumors, their secondary tumors, actually shrink or even disappear. You certainly hear of people talking about the fact that they've got no evidence of disease. But certainly people, when they're stable, are under control and it means really when we're talking about treatable but not curable is we know we're not going to be able to stop that cancer but we know that we can treat it and treat it like you say for these days far more many years in many people not everybody sadly than we've ever done before.

Yeah and when we talk about stable in secondary breast cancer terms it usually means that there is cancer found on the scans but It's not moving, it's not growing, it's not shrinking, it's just stable. I've known people who've kept their cancer stable for many years.

Yeah, absolutely. Different people have different ways of describing it. But it is the stableness. Is it not finding, you're not finding elsewhere in the body or the tumours getting bigger? So keeping it under control and keeping it as is. Sometimes people worry about the fact that the tumours are not getting smaller or they haven't disappeared. Stable and keeping things where they are on that level playing field is as good as things reducing in size.

Well, on that note, Paula, you were diagnosed in 2022 with secondary breast cancer. What treatments have you had and how are you doing now?

I'm good. I'm good. I don't want to tempt fate, but I'm healthy. When you say you're healthy and you have cancer, people look at you as if to say, you've got cancer, how can you be healthy? But I am healthy. I have my issues, you know, as we all do, when living with a diagnosis such as mine. But I'm stable. There's no evidence of active disease, which is obviously you will be able to explain a lot better than I am. But basically it means something along the lines of there's no, it's not moving, so it's stable. So it's just another and it's not visible as well. I think it's that thing that Catherine said like, there is probably a cell here and a cell there in your body that is cancerous. But it's so small as to be undetectable on a scan and it's not moving and it's not doing anything. And therefore we say no evidence of active disease sometimes. So I've had shrinkage and I'm stable since three years later. I'm on hormone treatment. So I'm on a drug called letrozole, ribociclib, and I have Prostap injections quarterly. And that's just to stop my ovaries from producing the oestrogen. But yeah, it's keeping me in a good place and that's all I can ask for and I'm happy with that.

That's fantastic. Similar story with me. So, you know, two people in the same room with secondary breast cancer, both on very, very similar treatments and both, I was also diagnosed in 2022. Yeah, three years on just keeping everything crossed that we can continue this way, living our lives.

So Catherine, you're a clinical nurse specialist. I had not heard of that term before I got my secondary breast cancer diagnosis. I'd heard of a breast care nurse, think, or breast cancer nurse. It's a term that people who are new to secondary breast cancer might not have heard of. But in fact, everyone in the UK, as far as I understand it, is assigned a specialist nurse. What is your role? Can you tell us a bit about that?

So my role at Breast Cancer Now is, as you say, do with, specifically to do with secondary breast cancer as we've described. And that means that I work with the organisation and anybody in the organisation that is talking about doing anything with involving people with secondary breast cancer in any way, shape or form. But it also means that I'm hopefully a clinical expert in that topic. I don't know everything, nobody knows everything and I've learnt so much in the decade that I've been in this role. But it does mean that I'm able to support other people, be able to give them information. I think the strength of the team that we have at Breast Cancer Now, and there are 11 of us nurses at the moment and hopefully to grow in the future, is that we've all got our own topics of expertise. So we don't all know everything, as I say, nobody can do that, but we all have those areas of expertise. So I've had to learn, I've had to learn lots in the decade, but it's been a really enjoyable role and meeting so many different people. We write the publications and the web information that is out there for everybody to access when they've got secondary breast cancer as well as all the primary breast cancer information as well for people to access. We support some of our services as well and I have a brilliant relationship with our secondary breast cancer services team. They're wonderful. We're expanding those services. I'm sure we'll come on to talk about that later. But I also support the policy and the campaigns team. Much of our work at Breast Cancer Now on policy and campaigns is around secondary breast cancer because we can see that there is a disparity. There is a difference between secondary breast cancer and primary breast cancer. And you said that everybody should be assigned a breast care nurse or a clinical nurse specialist, ever such a slight difference but actually from the support point of view from a patient's perspective then really that person, that nurse is there to give them support, to give them information, to help them understand their diagnosis and to help them make their way forward or to support them whilst they're going through treatment for secondary breast cancer.

And were you a nurse in hospitals before you came to Breast Cancer Now?

So my interest in breast cancer actually came from moving back to the UK, from living elsewhere in Europe. And I went to work for a private hospital. And what I could see on the ward there was a different, we had different patients on the ward. And we had women who were coming in for their surgery, for their lumpectomies, for their mastectomies, for breast cancer. But they didn't have a breast care nurse. We had somebody pop in from the NHS. but that didn't really give them the support and the ongoing support. So I tried to fill that in that role. And really my development of my role and the jobs from there on, it was that that really motivated me to move. I went to work in screening in a screening unit. And at that point, that was when I actually came to Breast Cancer Now. And then I also went back to practice. So I've worked for Breast Cancer Now or CARE. I think this is my 17th year, but I've had pockets of being in practice along the way. So the variety of what I've done is reasonable, maybe not as much as some of my colleagues. Some of them have got terrific experience, they really have. But what I really like about being with the charity is just the variety of the days that we have. No two days are the same. But we all take our part on our helpline and I ask our nurse written enquiry service. There are some staple things, jobs that we all have to do, and then we top those up by doing all sorts of things across the charity. And I love the work that I do.

I think as patients, we often feel that we can't approach our doctor or oncologist about certain things because we don't want to use up too much of their time. And we think that we need to just limit those five minute consultations to talking about our scan results. What can we go to our nurse or CNS about what sorts of issues can we talk to you about?

So for us at Breast Cancer Now, then you can talk to us about anything. What we're not able to do is give you medical advice. We can talk through what's been offered to you, help you understand that, help you think about things to make decisions, perhaps put you in touch with other people who've had to make those decisions and just empower people to be able to do that. We're also a listening ear because sometimes it is that time you don't get with your consultations, as you say, is limited, particularly these days. And sometimes people just want to be heard. We do an awful lot of signposting on the helpline to other organisations and other charities for support as well. But we also signpost back to the medical teams, people's medical teams, because sometimes they're the only people that are best placed to the questions that maybe people have. So people can talk to us about anything, side effects, managing side effects, just thinking about making decisions, emotional support, where to go to find other support as well. No question is too big or too small. We're here to listen as well, even if people don't have a question. Quite often they ring and say, I don't really know why I'm ringing you, but I just want to talk and find out why you're there and what you can offer me.

And that's for the nurses at Breast Cancer Now. I think it's broadly similar with the nurses that you're assigned at the hospital. So I was assigned a CNS when I was diagnosed and she would call me or come to the appointments. And when I was first diagnosed, it was particularly helpful because she made an effort to find out about my living situation at home. Who was there to look after me should I need it? What other issues might we have going on in the family that could also be worrying me or, you know, taking up my time, stressing me out and how could she potentially help in any way with that or at least make sure she pointed me in the right direction for the various support that I needed. And then now she'll be there, for example, if I just have a niggle or a worry, I could send a message to her and say, I'm worried about a certain pain that I've got. And she might then make the decision to check with the oncologist or check with someone else in the nursing team or get back to me or check up on a prescription or something like that. So I find they're there for loads of different, different kind of purposes. What about you Paula?

So pretty same as me. It's when you've got to chase up, chase up things like the pharmacy, getting my prescription written up and things like that. If I'm struggling, I'll just phone up my oncology nurse specialist and she'll just sort it out for me. I email them sometimes because I know that they're busy and I know if I know that it's not something that I actually need to speak to them about, I'll email so they can get back to me when they can rather than if it's different, if it's an emergency. And then I do use support group helplines such as Breast Cancer Now as well. If I felt that it's something that maybe I needed just to let off some steam rather than have a question for my oncology team, then I will call Breast Cancer Now or when I attend my Breast Cancer Now support group. I let off steam there as well.

And of course, as you say, if it is an emergency, yes, that's not when you contact this nurse. You should have an emergency helpline with your hospital, which in my case, I think is a Macmillan helpline, but there's always a helpline that you can call. So if you've ever got temperature or anything like that, or even go straight to A&E. So Paula, you just mentioned the secondary breast cancer meetups that you go to through Breast Cancer Now. I know you started attending those a while ago. What do you get out of those meetups and how do they work?

I get a giggle to be honest. It is a group of women and men if obviously men wanted to come and they needed to, that we will just sit there, have coffee, tea, and we're just friends that meet up for a coffee. It doesn't have to be about our cancer diagnosis. It doesn't have to be about the weather which we tend to always go to, don't we? But it can be anything and it's been a godsend for me. First one I went to, I'm sure you will, I know you do, Catherine. I sat in the car, in the car park, couldn't get out, so nervous, because it's the unknown, isn't it? You think that it's going to be something that it's not and you build yourself up in the head that it's, I'm not going to be able to cope with this. This isn't right for me. So I drove straight home again. But the second one I thought, don't be so silly, you know, a good talking to. And I went in and I'm so pleased I did. So pleased I did. They're a lovely bunch of ladies. There's lots of people, new ladies coming all the time. And I'm trying to help us as a group, trying to help with them, giving them the confidence to say, we've all been there. Just come in, meet us all. You'll realize we're not scary. And it has been a godsend for me. It really has.

And those are physical meetups rather than online. Is there an online meetup that people can take part in as well if they're not near to one of the centres?

Yeah, so the meetups, the in-person meetups that Paula has been talking about, we have 44 of those currently across the country. Majority are in England, we do have some in Scotland, in Northern Ireland as well, and North Wales. Currently around six online meetups a month which people can book onto, no problem. People can go to the in-person meetups as well as the online. Some people do a mixture, some people are not near enough to go to their meetup in person. Some people just like a mixture, some people actually are only down the road from an in-person meetup, but online is much better. They just feel a bit safer. There is an amount of anonymity sometimes there. You can switch your camera off, you can just listen and be part of that just listening to the group talk. And I think having those sort of options is really important and it's made such a difference to so many people to be able to access that. I realise that in person or online is not necessarily everybody's cup of tea, nor is a group. We've recently, we're just piloting also a chat online chat group as well, which is definitely anonymous. There's no microphone, there's no camera. It is like the old school chat room if you like. And you just make yourself up a name and... All of our services are facilitated by a therapist. So for us at Breast Cancer Now, it's quite important that there's somebody there to facilitate discussion, not take over discussion, but just make sure that everybody has their say, make sure we keep an eye on people who are a little bit quieter, that they make sure that they have their opportunity to speak. And there's absolutely nothing the matter with people meeting up socially, having a cup of coffee. But what most people describe those meetups as is a safe place to talk about and that. They're with other people who get it, who understand what's going on in that space in your head and why the things bother you at three o'clock in the morning and why you do ring the helpline and why you're a bit, oh, I'm not really sure whether I should ask that question or where to find that information out. So there's room for so many services out there. We really want to grow ours and certainly everybody else's contribution out there, other organisations and charities do a really great job as well. And we should all work together to support the people, everybody that's got secondary breast cancer.

I think there's a thing where if you are fortunate enough like us to have got to a place where you feel quite healthy, I think you go from a place of being like a newbie in the breast cancer, in secondary breast cancer to someone who is then able to come for other people. And that's quite a lovely thing. But sometimes when you go to those meetups, you meet people who have they're a few years on from you and they're still alive. And that in itself is just brilliant to see, because it's like, well, look at them, they look healthy and they look happy and they can still walk and you know, they're laughing and they're having a cup of tea and a biscuit and you just sort of see a bit of hope. How has it been for you?

That's exactly the same as me. It's sometimes people think that secondary breast cancer, you're not allowed to laugh. You're not allowed to be socialising. You certainly can't go to the pub because you you're ill, but I'm not. Well, I am, but I'm not. And while I'm physically able, I still want to be doing all of these things and go into that group. Like you said, is the obviously without going into personal situations of the women in the group, because it's private, is that there's some that have had secondary breast cancer a lot longer than me. And now there are some coming in the newly diagnosed and I'm in the middle. And as much as I don't want to be in this situation I have been put in, I am. So I need to make the most of my life, but also to give back to others that have been given to me the opportunities. And that's why I'm trying to bring more awareness that secondary breast cancer doesn't mean to say that you've got to stop doing everything you love. You can still work, you can still socialise, you can still live to the extent. May have to take a few more precautions like, you know, public transport, I don't like so much because I'm worried about all the bugs, a bit paranoid and other things like that. But that's my personal preference. I just want people to see me still as a human being and not somebody with an illness. But I'm very open about my illness because I think that's actually really important for people to see that you can still be an able-bodied person and still live with this illness in a positive way, so to speak.

Is there an element as well for you? So for me, for example, I find it quite difficult to talk to my family and my loved ones, my closest ones about my breast cancer.

Yeah.

But when you go and meet those slightly more distant from you people who know about it, it's easier to talk about the stuff that's on your mind.

Yeah, most definitely. I think sometimes I think my family are just sick of hearing about it, to be quite honest. I know that they're not and they'll always be there. My sister has been my rock. If ever I've got an issue that I don't want to bother anybody else, even my support group, I'll phone my sister. She's my go-to person. My husband, he's, dare I say, probably still in a bit of denial over the whole situation. Doesn't like to think about it. Doesn't want to plan for what's to come. I'm the complete opposite. I like to have things structured. I need to know what's going on and what will happen. I try to keep it fairly quiet in front of my children, but I'm also very open. And again, there are some women out there and men that have chosen not to tell their family members. And I'm sure you've come across that. That's their personal preference. For me, I talk too much. There's no way I could keep it quiet. So what you see is what you get with me. And that's how I've tried to keep going with my kids. No secrecy in them because they need to come to terms with it. Part of this diagnosis is grieving for yourself, but also letting your children grieve for you beforehand. There's different stages to it. I've gone past that grieving for myself now. And it's giving time for other people to see that I'm okay with what's happening. I may not like it, but it's happening. I can't stop it. So let's embrace what's happening and let's talk about it rather than not.

And that's why we're here!

Yeah, exactly!

Your three children were old enough to know what cancer means when you were diagnosed. How did you, I know you held off on telling your daughter while she was doing her GCSEs, but how did you break the news to them?

It was the day we got back from Bournemouth, so it only two days later after my secondary diagnosis because I mean they could clearly see that I was crying all the time. They knew that I'd had this appointment at the hospital. The last thing I wanted to do was make them worry without... Information is key I think and they're at the age where they can deal with it. They may not like it but I think it was the right decision for me and my family especially to tell them. We told them all individually. My husband told one of the children because I physically couldn't face them. And then I told the other two and they were okay. I mean, obviously how they dealt with it behind a closed door is how they dealt with it. I probably will never know. My eldest son said, well, that sucks. And you know, that's not fair. All the normal things that young adults would come out with. But they've dealt with it very, very well, I think. My son, birthdays, Christmas, buys me every experience he can find. We're going to super car, he is, not me, doing a super car drive in a couple of weeks that we got in for Christmas. And it's like, mum, you're coming. Because it's about seeing me in those pictures with them, it's those memories for the future. Probably won't see grandchildren. Hopefully I will, because you never know, do you? But that's okay. But they'll know that I was part of their life and that's important to me. So having me in the pictures, having me in those memories is good.

I think what Paula has said has hit the nail on the head really. It is trying to sort of balance that openness and honesty. An awful lot of women really do worry whether their children are tiny or whether they're older that they're going to have, it's going to have a big impact, which it will. It can't fail to do that. But I think that openness. We know children of any age really do benefit from being included to some extent or another. And that's not to say that you necessarily have to sit down and tell them everything from A to Z right at the beginning, but it's that starting of that conversation about what's going on and what might happen, encouraging the children to sort of say, you know, ask questions. And also being open about emotions as well, that it's okay to be sad and to be upset, but that everybody is here to support each other and that you will be honest and give them information. And information is key. We have quite a lot of information. In fact, we have more than quite a lot of information at Breast Cancer Now, a massive portfolio of written information. And we are starting to deliver more that is specific to secondary breast cancer. So I know that there are publications coming about talking to children specifically for those who've got a diagnosis of secondary breast cancer. We do an awful lot of signposting out to people like the Ruth Strauss Foundation, for instance, and Winston's Wish and Child Bereavement. All of those organisations have got some fantastic skills. So we're not necessarily the experts at Breast Cancer Now, and I'm definitely not, but we've worked with so many people on so many occasions that, you know, that's the type of information that is consistently given. And I think the one thing that sticks with me really is that, you know, some people worry about the kids finding out, but the thing is control, I think, from a point of view of what you can and can't do is something that an awful lot of mums want to make sure they have and... If you do actually start that conversation, as I say, not necessarily sit down and give them all that information, at least you're delivering it in a way that you want them to hear it, rather than them finding out from somebody else, another friend whose mum said this in the playground, or a text message, or a card, and somebody's written something in. Kids are really, really astute. They're really, really astute. And they're also really resilient as well. Pretty egotistical, so they will do what we call puddle jumping, so one minute they'll be upset and really shocked and upset, and then the next time it's, when am I going to football and can I go around to Joe's to play? They do this in and out. But with the right support, which we can signpost people to, kids can manage and manage really, really well. So we do encourage people to think about, not necessarily say, you must, or you really need to think about this, but just... just give them the tools to think about that.

And you did actually say, if you don't mind me saying, about control. Now, the diagnosis, everything's taken out of your control, but giving yourself some of that control back and how you deal with it with your children is really important. And I felt for myself, the way I delivered it to my children is exactly what you just said. was my control over my diagnosis and how I portrayed it to the children, what I said to them and how I said to them. and then I could filter things through and that was my control. I've really, really, yeah, you hit the nail on the head on that one.

We've done a brilliant episode as well on talking to children about cancer and we've got one to come on talking to children about grief and death. They're both with Caroline Leek from Fruit Fly Collective, which is a brilliant organization. So anyone who's worried about talking to their children about cancer, do have a look at Fruit Fly Collective, I can never say that one. And the link will be in the show notes to that episode as well.

And Catherine, what about husbands in denial or partners in denial? Because this is something that I'm hearing a lot at the moment. My husband is in a bit of denial about it, even though lots of the patients are saying, you know, I've come to terms with it, but my husband is really, doesn't want to talk about it. What do you do with someone who just won't talk about it?

I think that's really tricky, isn't it? Because you can't make people talk about it. But I think, again, you know, between couples, there are plenty of people who are, you know, go down that road over in a little bit of denial. And it's trying to sort of open up communication and having those opportunities to speak and just encouraging them to speak about it. We definitely hear from people on the helpline who want to sort of support their wives, their mothers, their daughter, whoever it is, but are really afraid of opening up conversation. They don't want to upset them, but actually being open can make people understand how you're feeling, each side is feeling, and what helps and what doesn't help. There is quite a lack of support, I would say, for partners. That's something that is really, you know, I would really like to think that we could develop at some point in the future. So it is really tricky. And I guess, you know, the longer people are living with secondary breast cancer, which is a brilliant thing to think about, and the fact that that could develop even, and you'll be even better in the future, that does still mean that that's an awful long time to be living with the impact of the disease and to be alongside somebody when they're experiencing that is very different to being the individual themselves, but is no less sort of difficult to deal with. So our helpline is there for anybody that is supporting somebody, is married to, is with in any way, shape or form, to sort of open up and just talk to us about that as well. And I think those meetups might help with that as well, because I think you can worry about a loved one who might be in denial and it's not just partners as you say, it might be your parents, you know, if you're in your forties say, you might have elderly parents who might also be in denial about it. And that is totally natural, isn't it? But you might find someone at one of those meetups who is going through similar, but has maybe overcome it and maybe has some thoughts.

Paula, when we have secondary breast cancer, we usually have scans every three months, but if that's going well and there's no kind of no news, no news is good news at each scan, then you sometimes move to six months scans. Am I right in thinking that you've moved to a six month scan?

I am, after my diagnosis, I went onto my treatment plan and I had my first CT scan three months after my treatment had started. That came back with significant reduction and stable scans. So my oncologist, absolutely lovely lady at the Churchill hospital, she said, you're fine. You go to six months. My heart sank because the thought of an extra three months. Well, that's an extra three months if it has grown. That's three months less treatment. It can get twice as big, you know, your mind just goes, you go off on all these different roundabout exits, don't you? Of which direction is this going to take me? That first six months was the worst waiting. And then I had the six monthly scan. Obviously I was still having quarterly bloods which does tend to show, I don't know what it shows up, but it shows something. That's your answer. And that can tell whether or not the cancer's moving, I think. And my six-monthly came back and it hadn't moved, hadn't done anything, and it was still stable. And I've been on six-monthly scans now for three years. And until, God forbid, hopefully a long way down the line, but when it does happen, because it will, and it starts to grow again, I'll probably go back to three months.

Yeah. And have you found a way of managing that scanxiety, if that's what you would call it?

Yeah, I do call it scanxiety. I don't mind having the scans done, because you're not gonna change the outcome.

Of course, yeah.

You can't change what the scan is gonna show. It's the waiting. It can be, I mean, the quickest time that I had to wait was two weeks for my scan results. The longest is normally five to six. It's that waiting in between, is it taking this long because it's grown and they're just keep checking, keep checking. Are they re-deciding what treatment that I need? Are they having the morning meetings about Paula Van Santen and what should be done next? So it's all those and it doesn't help with them anxiety hence why it's called scanxiety, I suppose. But that's the bit that's the hardest, the scan itself is fairly straightforward. It doesn't hurt. It's not invasive.

And have you found anything to occupy you and take your mind off it and help with the mental side of it, because I know you do floral design, don't you?

Yes, I'm a florist by trade. Arts and crafts is my go to. If I'm struggling, I will sketch and I love gardening. Anything to do with flowers, floristry, wreath making is my niche.

They're both great things to do because getting outside in nature, doing things that don't involve being on your phone or social media, top!

Yeah, I've tried to reduce my social media and death scrolling and seeing how everybody else is living their lives to the full. So I have tried to reduce that. But six months a year when it's light and warm like it is today, it's fine. But when it's dark and it's getting dark early, they're the times that are really, really difficult. The way I worded it recently to my sister was, I'm really struggling with anxiety, panicky, not like leaving the house as much as I previously was, especially with having a few UTIs. I need to be near the toilet. It's just a long story. And I found my house has become my sanctuary, but it's also become my holder. It's my prison. It stops me from doing things. But I love my house. I love my garden. But something stops me from living sometimes and leaving that space because it's become too safe.

Low mood, anxiety, depression. It's a very common side effect of secondary breast cancer and breast cancer as well. What should be the first port of call when we're talking about low mood?

I think firstly, just letting somebody know how you feel. It's the same with anything really. It's important for those conversations to be had. The same with menopausal symptoms, vaginal dryness. There's lots of things that people don't really want to open the conversation up. But if you don't do that, then there's no way of talking to somebody about how that can be helped and you can be supported. And the same with low mood. An awful lot of people experience low mood. That's not necessarily depression. I think we tend to think of being low mood as being depressed, but there is a clinical definition to depression. But if we think about low mood generally, finding support and finding somebody to talk through, finding ways of managing that. I'm no counsellor and I know the limits of my practice and we talk to an awful lot of people and give that support and give emotional support on the helpline. But we also know it's right for us to signpost people to different talking therapies, be that a clinical psychologist or a counsellor, and they've all got very different approaches, different therapists to be able to look at how you're coping, how your mood is. Some people will need some medication. It's not unusual for us to talk to people who say they've been put on medication to help their low mood, not necessarily diagnosed with clinical depression. And sometimes that works and sometimes it doesn't. It can take a little while for those sorts of things to work. But often people find that just having the outlook of being able to talk about how they feel. So if you've got somebody that's in denial in the house and you don't have that opportunity, you don't meet other people who get it. You don't really have people who want to listen to you or you think they don't want to listen to you, that they're fed up of you or that sort of thing, can be really isolating and very oppressive. So opening the conversation, talking to other people about how they've dealt with that as well. And I always think that both the professional and the peer go parallel together really. Somebody who's got the skills to be able to help you and have that information and the expertise in managing low mood, but also people who know how it is to have been there and what they did and what lifted their mood. Be that getting out in nature, something as simple as that, or getting back to exercise, swimming, those sorts of things, or something completely different.

Well, I've been struggling for the last six months with anxiety, but I couldn't recognise it was anxiety at first. And everybody kept saying to me, I think you're depressed. I think you're depressed. I'm not depressed. I knew that I wasn't depressed. I'm happy-go-lucky. I'm not sad. I'm not unhappy, but I'm struggling with the get up and go mood, the... Oh, I should be really looking forward to doing this or why don't I do this? It was the anxiety that was holding me back and it still is to some extent, and I'm not going to sugar coat it. I am struggling with anxiety. Leaving the house can sometimes be a struggle. Socialising when everybody else is really happy around you. Sometimes you want to be around it and you don't want to stop people having fun, but then you start to think... This is all still going to carry on even when I'm gone. And it's those thoughts that start to go through your mind and it gets your anxiety to the stage where what's the point in socialising? I'll just hide away because maybe I'm better hiding away than being in the forefront. Then people will have a better time without me because they've to get used to me not being there anyway. So let's start now. So it's trying to overcome those anxieties. My support group has given me loads and loads of pointers. They were actually my first point of call to not self-diagnose but recognise that this is anxiety, we've all had it, some more than others, this is what they've done, this is what somebody else has done, what's going to work for you and they've given me suggestions of where to go. But it's recognising where you're at, like you talked about depression and anxiety being separate and each one will have different types of treatment and that's where I'm at at the moment. So yes, I've really badly struggled with anxiety.

And have you been on any clinical trials? Cause I know you've been in touch with Make 2nds Count.

I haven't taken on any clinical trials. I spoke to Mel at Make 2nds Counts. Catherine put me in the right direction there. We had a lovely conversation, lovely lady, and we went through everything with a fine tooth comb. She was so good. But because I am stable, because I have had a reduction, for me, don't fix what's not broke kind of thing. The treatment is working, so why do anything to rock the boat? So I've chosen, and obviously it is always my choice, to not go forward with any trials, but I will be contacting her again in the future for sure. If my next scan in August comes back and there may be progression, I might decide to phone her again and just see what's now available. Because like she explained is that the trials are so frequent and they come and go so frequently. What was right for me, right that she was telling me six months ago may not be there now. So there's no point in saying, oh, you can do this in six months, a year, and it might not be available. So I'll give her a call back as and when.

So Make 2nds Count have a clinical trials service. The team actually only consists of Mel at the moment for Make 2nds Count, but she's a lead clinical trials nurse. And it's an information giving service first and foremost from my perspective. And it allows people to find out about clinical trials and do a bit of mythbusting. Quite often people think that clinical trials are for when treatment options are now limited or no treatment options. But that's not the case. Many people can experience, are you part of a clinical trial as part of their treatment? And it can be a really important part of some people's treatment pathway. So they can be considered any time. You're absolutely right, Paula. There is no reason to say to anybody, do you want to join a trial when your treatment is working and working well? But at the time that there is some progression, some people want to know. But you need to know whether a trial is for you or not and whether it's something that you would want to join. So that information given really helps informed consent, informed decision making and even if after talking to Mel somebody says thanks for the information a clinical trial isn't for me that's still a useful service. You've made that decision, you've had all the information equally somebody might like yourself, say, actually, I'd be interested in a clinical trial. It's not what I thought. I'm not the guinea pig. They're not just testing something out that they don't know whether it's going to work or not. And then if necessary, if it's the right time, then Mel will also look and search for clinical trials that could be open to the individual. And that might be in their local area or their region, but it could also be nationally as well. And I think that's the great thing about the service. is that they've got a handle on a lot of clinical trials, always changing, as you said, up and down the country. And some people will choose in Glasgow to say, I will go to the Royal Marsden, if that's where the trial is based. Some of the companies actually pay transport fees, travel fees, and that sort of thing. But if people are well enough and they want to go on a trial, then it opens those doors up or encourages them to go back to their oncologist and to have that conversation about trials with them. So you can look on the Make 2nds Count website, you can fill in a form and then Mel will give you an appointment to have that one-hour or so discussion on the telephone and get all the information you need, whether you need it right here right now or whether that's further down the line as Paula was saying.

Yeah and you don't have to wait until you start progressing.

Nope.

No.

You can get in touch with them at any point if you're stable or no evidence of disease or if you've got progression just to get to chat to them and you know, get on the system.

It's a case of knowledge is power and you know if you got to that point which you know inevitably people do, however long that takes that their treatment stops working, rather than getting to that point and taking on the anxiety and the impact of that and then being presented, do I go on a trial and not maybe the oncologist or the the research nurse has put that in front of you. That's really difficult to take on board at that time when you're, this is a change in your treatment, it's a change in your condition. Hopefully you're going to get that under control again with another line of treatment. So actually arming yourself with that information about what trials are and what they aren't is also really helpful. You're ahead of the game if you think you've got that information and it makes it that little bit easier for you to make that decision as to whether a trial or a particular trial is something that you want to join on.

I'd like to ask you both about travel insurance. Paula, have you managed to travel since your secondary diagnosis?

Yeah, I'm not going to stop! Yeah, just come back from Holland to see the tulips. Sand Travel insurance. I used Insurancewith. Obviously, if I was to get progression, I would let the insurance company know because my policy would be affected. But at the moment, it's all okay. So yes, definitely traveling.

Oh, that's brilliant. Because I had a nightmare when I was first diagnosed because I was about to be going on a trip and my travel insurance had run out and I couldn't get insured by anyone. And the reason for that was that I had just started treatment. And when you've just started treatment, often insurers won't insure you because it's not about your cancer progressing. It's that they don't know how you're going to react to the drugs, the new drugs that you're on. You will generally find that most travel, most normal travel insurance companies won't cover you for a secondary cancer diagnosis. However, there is a brilliant one called Insurancewith, which we'll link to in the show notes, which was set up by the brilliant Fiona, who has secondary breast cancer herself and therefore understands.

We definitely found it a lot easier going with Insurancewith. The forms, yes, they're long. They can be a little bit complicated if you don't know the terminology.

Mm-hmm!

That's where Breast Cancer Now came in for me because I would call the nurse and ask them what this terminology meant, which was brilliant. But we also got my husband insured with the same insurance company. Again, personal preference, because if anything was to happen with me, we didn't want to have to be dealing with two different insurance companies. Fiona, give some great advice about thinking about when to travel.

You're absolutely right, Laura, that when you've just first gone on to treatment or changed treatment, that can be a tricky time. won't. cover you or cover you to the extent that you need it or thinking about where you go is another thing as well that can be really expensive in places I think like she said Mexico and the US but actually much cheaper closer to home in Europe or even some other countries that are a little bit further away depending on the healthcare system and the cost of that as well. So she also directs people to a website called Travel Insurance Explained as well. Which is a new, it's not a company, it's an information website, but that's got some great information on there.

I think I feel a whole 'nother episode coming on on breast cancer and travel.

Oh yeah, that would be good.

I'd like to finish with the question we're asking everyone on this podcast. Breast Cancer Now's vision is that by 2050, everyone diagnosed with breast cancer will not only live, but be supported to live well. Paula, what does it mean to you to live well?

Everything. I think that living well shows that treatments are coming forward. And if you're not living well, then this is standing still. We always need to be moving forward. What I would like to see is routine mammograms being brought forward for the younger age, like cervical smear. Because I think, you know, I was 47 when I got diagnosed. 50 now. Obviously now I'm at the age where I've stopped my routine mammograms, if it had been earlier when I was perimenopause, then obviously my cancer probably would have been caught earlier and it'd be nice to bring it down even lower than perimenopause. So by then I'd like to be seeing that happen. Um, keep traveling.

Keep traveling.

Oh yeah. Keep traveling. I've already traveled the world, um, in my younger years. but there's still so much more to see.

Yeah. Catherine, what does living well mean to you?

I think if I reflect back over, I'm not gonna say how many years I've been around, then that's changed. I guess that living well changes in the same way as people's cancer does and their lives do, outside cancer, without cancer, all of that sort of thing. I'm not a good sharer. I know I talk a lot, a bit like you Paula. But I'm not a good sharer. So I think living well for me telling myself is sharing and being heard and being listened to. And I think that's what an awful lot of people at the moment need when they call us. But I think anybody listening to this podcast, even if they're not affected by breast cancer, I think we all need to listen to ourselves, share what we feel is appropriate and get the appropriate support so we feel listened to. and heard and respected as an individual.

And where can people find out more about Breast Cancer Now's support services for people living with breast cancer?

So they can go to our website so www.breastcancernow.org or of course they can ring us the nurses on our helpline so 0808 800 6000 and we're open 9 till 4 Monday to Friday and on a Saturday 9 till 1. Bank holidays we get the day off. But we're always there. There's always a voicemail for people to leave us a message on and we will always try and get back to people if they leave us their name and their number. And also our health information, which we've got a huge portfolio of information spanning all of the treatments, both primary and secondary breast cancer, lots on side effects as well, which you can find that on our website as well. If you go to the area of publications, you can download and you can order them for free and all of our support and information is free.

Thank you so much Paula and Catherine.

Thank you.

Thank you for having us.

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 @breastcancernow. 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.