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And so I think if we provide better menopause support for breast cancer survivors, we can support people to perhaps stay on the treatments that are really important for them. And whilst they do so have a better quality of life.

There's always that thing we feel like we're bothering our doctors or oncologists. But of course, it is such an important thing to do with our quality of life, especially when you put all of these side effects and symptoms together and look at the overall impact on your life as a whole. It's not trivial. and it's really important and you can go back and have that conversation if you're struggling.

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, we're talking about menopause and cancer with a go-to guide to everything you need to know about hot flushes, vaginal dryness, low mood and more. Our guest is Dani Binnington, founder of the non-profit organisation Menopause and Cancer and host of the Menopause and Cancer podcast. Dani set up the podcast after she was diagnosed with breast cancer at 33 and was thrown into early menopause. She's created a worldwide community supporting people through cancer-driven menopause, and she's also written a book, Navigating Menopause After Cancer. We're also joined by Louise Grimsdell one of Breast Cancer Now's Senior Clinical Nurse Specialists who's here to provide more information and support on the specifics of menopause and cancer. Dani and Lou, welcome to the podcast.

Hi, thanks for having us. Or should I say welcome back, Dani, because you were on the podcast many, many years ago.

That is very true. yeah, lots has happened really in those few years.

It was before my time. So we're to start with a few warm up questions to each of you. So I'll go to Dani first and then then we'll go to Lou.

Oh no, I was hoping it'd be the other way around.

Maybe we'll mix it up.

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?

It would definitely be India. India's got a little bit of my heart, so I'd always go back there. You've been there already.

Lou?

Mine's Borneo. Again, went there for my honeymoon a good few years ago now, but would love to go back.

Lovely.

And we're often talking about bucket lists and long term goals. But if there's one thing from your life goals list that you could do now, what would it be and why?

You're going to go first?

I can go first. I would say a camper van tour around Europe with no real sort of plans or direction, which just literally is so different to how life feels at the moment.

Nice. I think mine would have to be work related. ticked that one off, it would be to get menopause support embedded into oncology services across the UK.

Amazing.

Well, we'll talk about that in some more detail soon, but that sounds like a brilliant goal to me. And complete the sentence, I will never.

Pretend I know it all because I think the best thing about my job and life has been to realise that you're always learning and it's so important to be able to change your mind.

Yeah, that is very true. Lou?

Bungy jump.

Yes, I agree with you. I will never do that either.

Dani, before we start talking about all things menopause, could you tell us about your cancer diagnosis? So where were you in your life before you were diagnosed and how did you find out you had breast cancer?

Yeah, of course. I was a really busy mum to three very young children. My twins were two at the time and my eldest daughter was four. And it was actually my husband that said, your parents aren't doing very well. They lived in Austria. We were in the UK. And he said, go and spend some time with your mom. And so I packed up because my dad wasn't doing very well. I packed our cases and I took my three kids and I kind of went on a bit of a solo parenting time. My husband was commuting weekly to really go and support my mom through a difficult time with my dad. And about six months in, I don't think I had slept by then because my twins never slept. It was a very busy time of our lives. About six months in, I was watching the telly, I had a grope in my armpit and there it was, a very, very obvious lump. Not a very small lump either. And I had no idea how I missed it for that long or maybe it just appeared overnight, but there it was. And that sort of derailed, as you know, our life forever.

And what happened after that? What treatment did you have? How long did it take to get diagnosed?

Diagnosis didn't take very long, although for the first few meetings, all I could always remember, it looked very benign. It looked like a fibroadenoma. It didn't look like anything to worry about. Christmas happened in between and I was kind of told, come back next year. And we've got a strong family history of cancer in my family. And so that didn't sit well with me. And so I really, really pushed to get seen quickly and to wrap it up really quickly and pushed for. appointments to get seen on a cancellation list and it turned out to be an aggressive type of cancer, not a hormone sensitive cancer, but I didn't know anything about breast cancers then. So I just was plonked on that roller coaster of treatment. It felt like someone put me on this roller coaster or escalator and it didn't seem there was a way off at the top. So I had lots of surgeries, chemotherapy and radiotherapy.

Wow. The beginning of that story sounds really similar to mine in the sense that it was thought that it was a fibroadenoma. It was thought that it was benign. I was told come back in a few months if it's not gone away.So thank God you did. You you stuck to your guns and you had that feeling and you decided to push for a diagnosis. You mentioned you had a strong family history. Have you had tests for BRCA gene, any other gene mutations?

Yeah, and the family history was all on my dad's side of the family and every woman on my dad's side of my family, like two of my paternal aunts, my grandmother and my great mother, all died of ovarian cancer before they even turned 55. All of them. But I wasn't very educated about genetics and family history. And so I think no one educated me either, no health care professional. And so I always thought I'm safe because it's on my dad's side of the family and it won't affect me. But my doctors then put two and two together and asked for me to go to genetic testing. And I am the carrier of the BRCA1 genetic mutation. So I am the first one in my family to be tested. I had breast cancer then. It kind of like wasn't a huge surprise, but it was still a really big shock.

Okay. Well, we'll talk about that and what happened afterwards in a moment, because you were thrown into surgical menopause after having your ovaries removed in your late thirties. Louise, shall we start with the crucial question? What is menopause?

Yeah, so feel free to chip in, Dani, because again, this is your area of expertise. Certainly, I mean, menopause is one day in time. It is 12 months from your last sort of period. But what we talk about and generally in the UK, the average age of natural menopause is around 52. Prior to that, there is sort of premenopausal when you've got regular periods and then there's that period of time which is perimenopause. So again, if you're going into a natural menopause, there'll be a slow decline for most people of their hormones. And then after that one day, once you've reached the 12 months, you become postmenopausal. And then I'm sure we'll go into all of the impacts of being postmenopausal.

We will. Yeah, we've got lots and lots of questions and lots of experience between us as well. Could you tell us about that process of being thrown into a surgical menopause?

Yeah, and actually in retrospect, what I know now is I was going through menopause a couple of times. So when I had chemotherapy, my ovaries stopped and my period stopped. And I remember my oncologist saying, you're going to lose your hair. You might have problems with your fingernails and nausea. We're going to treat that like there's loads of side effects I was expecting. And I think I was also expecting for my periods to stop. I had no idea that meant menopause. I didn't know. I was so poorly educated as a young woman. And I also didn't know that menopause meant having symptoms of what that means for my body. I don't think the word was mentioned, but it was definitely told. I was definitely told your periods might stop, but I no idea. In my case, my periods came back. So looking back, I know I was in a medically induced temporary menopause because my periods came back. And then because I'm a BRCA1 carrier, I had to make the decision, what do I do about more risks of more breast cancer and my higher risk of ovarian cancer? And everyone is so different, but my own story was that I felt it was quite easy to let go of my breasts. I was never really booby kind of girl. I kind of thought I can do this. I'm good bouncing back from surgery. And so I embarked on a double mastectomy. how that was handled to me then preparing for my removal of my ovaries was so different. I just couldn't quite believe it. And that really sort of set me on this path of trying to find out what I can do for myself. And then meeting lots of people along the way who also didn't know what they could do for themselves. sort of it was my own little sort of menopause revolution, I think.

Why do you think you couldn't believe it?
Was it because you'd had kids and you sort of knew what your ovaries and what your body had done?

Yeah, because by then when I was preparing for my oophorectomy, so the removal of my ovaries, the menopause revolution, you'll remember it Lou, was rife in the UK. Everyone was talking about the menopause and HRT and there were people on the telly and campaigning outside houses of parliament and I thought, but I don't fit their narrative because when I asked about my solutions for menopause, it was either, well, you've had breast cancer, there isn't much you can do, or let's wait and see. But when I had my double mastectomy, I was such an active participant in managing that. They were like, Danny, do you want to go flat? Do you want a reconstruction? You can keep your nipples. We can have them tattooed on later. We'll go straight to expanders or we'll look at your tummy fat. I was like, actively choosing how to do this. When it was about removing my ovaries, I was just told it's a keyhole surgery. You'll be in and out the same day. Don't worry about it. And I was like, my doctors are telling me this. But all of those campaigners are out there saying the menopause is a thing, like something doesn't add up. And I realised that women after cancer are falling massively through the cracks.

Yeah, it's, it's so they didn't say this is what's going to happen after that surgery. They didn't explain any of the side effects symptoms you were going to feel?

Oh, they did explain all of that. And that was the end of the story.

They just didn't tell you there were any possible solutions. Okay. And what What did you feel after you had that surgery?

What was or what has menopause been like for you after surgery?

Very isolating, very confusing. There's lots of different opinions out there. There is no real advice from anyone really that I could look towards. There was no community. I couldn't fit the narrative of other people. Frustrating. I felt very angry that there wasn't more support. I thought, well, I'm now a 39 year old young patient. I've gone through a lot. I've advocated through my breast cancer treatment. Why would you leave me hanging now? So a lot of those symptoms that were sort of like around not being able to access support, but then also changes in mood, depression, more loneliness, increased anxiety, itching skin, no sex drive, no libido. Should I carry on? Dry vagina. Like there is so much. didn't all hit me at once. It came in waves, things came and went, other things stayed, some things went worse. And I think I was then aware that this is the menopause because I was starting to really look into what I can do for myself and others. But I think a lot of people are sitting in the dark.

I think it's really interesting that you, when I asked you that question, what was menopause like for you, you led with all the mental health side of it. And then you moved on to the physical almost as if it was an and after thought, and actually that shows how strong that impact was on you, how strong that effect was. And actually the physical side effects that you had, affected you mentally.
And as it does with many people, as you've learned over the years with your work, just before we start talking about the different ways menopause and perimenopause affects us, my own experience is almost the opposite of yours. So I was diagnosed with breast cancer when I was 29. I started chemo. My period stopped during chemo, but they came back about a year after, maybe I think, but got really different sporadic weaker over the years. And I had a whole period of 10 years before I got a metastatic diagnosis. And during that time I'd had kind of a perimenopause for 10 years. So I was on tamoxifen and I suffered from hot flushes, aching joints. maybe some differences in mood, fatigue, the whole shebang of what we think of as perimenopause. And then when I got a metastatic diagnosis, I started on Zolodex and Letrozole, which essentially turned, shut me into a medically induced menopause. And then overnight, those symptoms all just ramped up to the power of 25 thousand or whatever, the hot flush has got a million times worse and a lot more frequent. The bone aches and the fatigue got much, much worse. The mood situation plummeted and there's obviously the secondary factor of that is that I was also dealing with the impact of a diagnosis, a terrible diagnosis. So we've got some kind of different, lots of the same signs and symptoms, but with a different timeline, different severity over different periods of time, et cetera. So between us, we've got all the experience.

And it's really important to mention that because Lou explained so beautifully how menopause and perimenopause happens for healthy people. someone with a history of cancer, it's a very different and more abrupt situation. And I think it's really important to say it affects people after any type of cancer, because it's not the cancer that makes you menopausal, it's the treatment. And so whether of course, we're here to talk about breast cancer, but there people after any type of cancer who have radiotherapy to the pelvis or surgery. And it's important to include everyone in this conversation. And at whatever point we often have people that come to us 15 years after the active cancer treatment finished and they're still really struggling.

absolutely. Yeah. Well, mine's 14 years after the beginning of my first diagnosis and I'm still going through either perimenopause or well it's menopause because I haven't had period for years but I'm still getting all the hot flushes and everything that you think, I think you think that it's gonna end at some point. Is there a way to summarise what the main symptoms of menopause are?

So there is a long list but the most common side effect, symptoms sorry, of menopause, hot flushes, vaginal dryness, palpitations, night sweats. itchy skin, sleeplessness, lack of or low libido.

Low mood, anxiety, weight gain. There is lots more.

Joint aches, rage.

Love it. So true.

It reads like the long list of side effects on the back of a medication package.

Having said that, hopefully not everyone will get all of those symptoms. But there is a checklist both with breast cancer now and on Dani's website.

Yeah.

Very satisfying thing to go through that long checklist going, yep, got that, got that, got that, got that. Anyway, we'll go on to the questions specific to menopause in a moment, but First of all, I wanted to talk to you about you set up Menopause and Cancer. Am I right in thinking Menopause and Cancer, the podcast came first and then came the organisation?

Yeah, at first, my own patience of needs to learn more about what I could do for myself led me to opening and setting up a Facebook group years ago now. And it was just one of my sleepless nights, you three o'clock in the morning when you're on browsing the worldwide web. I thought, just see if there are some others. And I remember it was a really busy afternoon. Kids were running around. They were a bit older then. And I opened my laptop to check Facebook. I did expect a handful of people because I'd been chatting with them on Instagram. But when I opened the app, there were about 300 people to be let in. And when I admitted one by one, I was like, oh my gosh, these people from all over the world, they had different types of cancer, different treatments, pushed them into the menopause and they had different symptoms. But the more and more I listened, There were the same stories. All of them said, no one told me I was going to be made menopausal or that it will be such a big impact. They said, I've no idea where to go for help. And then they also said, I feel really lonely. And so initially it was really nice for me to feel less alone. And I then kind of thought, what can I do? And at that point I had my turning point for me. And my turning point was a really amazing menopause consultation on the NHS in the UK. And that one appointment suddenly opened the doors to my options after my type of cancer, what I could do for my symptoms. And so I could see it's possible, but in my Facebook group, I could see it's not possible. It's not happening for most people. And so I thought a podcast is a great idea. I can pull that off. And I was just going to give the microphone to all of the experts that I sort of started to meet. And the purpose was to share their knowledge and expertise with the people that couldn't access anything. But more and more people kept emailing saying, Dani, I absolutely love the podcast. It's amazing. It's the best thing I've found. But. and there was always a but every email and I and there were weeks I had hundreds of emails because the podcast really gained some traction because there wasn't anything else and there was always a but people still didn't still didn't know where to go for help. They still didn't get the right help from the medical team. And so although I was providing some support, it wasn't enough. And that's when the not for profit was born.

And tell us about the not for profit. What do you actually do? What do we do?

So we aim to bridge that gap, this information gap, and we bring expert advice in different ways, whether it's a workshop, an online forum, whether it's written resources to our community that is now a global community. We also go on the road. So we've got about 13 locations in the UK that are menopause and cancer hubs. And in these hubs, we run community support sessions. And on some weeks we've got over 30 sessions every single week going on across the country. So it's great. So we really want to provide in-person online support. We also educate healthcare professionals. People learn in different ways, don't they? So we've tried to create the services that our community tell us they want and need.

And you've benefited so many people around the world. You you've grown this massive community, all these women who have, you know, learned from you and used your services and you know found that community with you and all the other women in it. I'm one of the people that's benefited you know from listening to the podcast it's absolutely brilliant there's so many episodes on there that just teach you so many different things and listening to your voice talk about it as well you're such a sympathetic and understanding voice in this community but how has it helped you?

I remember this one time when I was in the Facebook group very early on. So this is one of my very first sort of like really strong memories. Keely joined the group and I've since become friends with Keely and Keely was a young mum. She had three teenage children. She was a single mum and Keely said she had ovarian cancer surgery to remove her ovaries. And when she emailed, she said, I don't think I can do this anymore. I'm worried someone is going to take my kids away. I can't get out of bed. I can't care for them. I can't feed for them. I can't cook for them. My life is crumbling. And it was one of the worst early messages I've received since then. These are messages we receive every single day because menopause does floor some people after cancer. But at the same time, I felt this massive relief that it wasn't just me. And I had this real paradox sort of feeling, you know, the real empathy for how difficult it is for others, but also this real like, oh my gosh, because for so long, I thought it's me, I'm missing something. I haven't worked hard enough. I haven't advocated hard enough. It was the responsibility lay solely with me. And on that day, I realised the system has been failing people and cancer survivors. Because when I was diagnosed with a lymphoedema, a chronic swelling in my arm, I was sent to a lymphoedema clinic. A lymphoedema is a long term chronic side effect of my breast cancer surgery. And it happened to me. Are there perfect treatments? No. Have I had some support? Yes. We cannot continue to make millions of people menopausal because of cancer treatment and then just turning our backs and saying, and now we're not going to help you. And so I think feeling alone throughout has been the best for me.

And what is the thing, the ultimate thing that you want to be created?

We need to make sure that menopause is spoken about early on in someone's prognosis, diagnosis. It needs to be drip fed into people's conversations. Sometimes it's too early to talk about it, right? When you get your first diagnosis, but people have to bring it up. It has to be the healthcare professionals responsibility to drip feed it. We can't just wait for patients to fall apart and then the strongest to come out at the top and get the support they need.

Lou, you're nodding your head vigorously.

Yeah. And certainly, I mean, We've had so many conversations over the past few years, around sort of support and certainly from our organisation, Breast Cancer Now, it's the one topic we get from healthcare professionals time and time again, what do they want support on? And it's menopause or sex and intimacy. And I know when I was working in the NHS and as you were speaking, Danny, about going through chemotherapy, think we focus on those real side effects that sort of being neutropenic, the impact on your bloods, hair loss, peripheral neuropathy, fertility for younger women. But we don't then equate that with your periods are going to stop, you're going to be menopausal. Well, I certainly didn't seven plus years ago when I was in clinical practice. And I think now it is, you're absolutely right, Dani, we need to start having those conversations earlier, yet your periods may be impacted and this is going to be the result of that. and this is what support is out there. This is the information. And again, it's absolutely on every conference I've been to recently. So I think it's getting there, but it's still got a long way to go. But it's that signpost, and I think it's that information, knowing what's gonna happen and those possible signposts for support, we certainly are always sort of signposting on to Dani's podcast, which really sort of gives an overview of the different sort of ways to manage it. But I think, again, it's there's so many different options and it may be that it's just having that conversation. And I know before having spoken to lots of people on our helpline and people in clinical practice, it's just not being offered that conversation can be really difficult. So when you're sort of said, oh, yeah, I'm really struggling with menopause, well, you can't have HRT and it stops there. But actually, Just having that conversation to say, actually, maybe HRT is not suitable for you, but these are the possible options you can explore is really important.

I think as patients of cancer, and particularly me as a patient of metastatic cancer, and then on top of that, as a woman, feel like we, there's always that thing, we feel like we're bothering our doctors or oncologists to ask something. they're already doing so much to save our lives, to give us life-saving surgery, all these amazing treatments. In my case, know, they're keeping me alive. Sometimes it just feels trivial to say, but I've got really bad vaginal dryness or, you know, I'm feeling a bit depressed or do you know what, the hot flushes are at least once an hour and I'm sweating all over the place. you know, I just, feel like on top of the fact that I'm just not dying currently, that does feel like a trivial thing. But of course, it is such an important thing to do with our quality of life, especially when you put all of these side effects and symptoms together and look at the overall impact on your life as a whole, your happiness, the happiness of the people around you is a huge thing, isn't it?

I think it's the acknowledgement. Many people, when we run workshops and programmes and it's just for someone, a medical professional to acknowledge. this can be difficult and come with symptoms, actually is a big win for many patients. They're like, oh, like I felt like I had to sort of like really say how awful it is, but my doctor understands medical menopause is difficult and that acknowledgement is really important and everyone is so different. Some people might listen to this and they might worry, am I going to get all of those symptoms? And we just don't know. And I guess as a healthcare professional, you can't say to everyone, well, these are all of the 30 different symptoms you might be getting because you might really be scaring people. So it's a difficult time, isn't it? When do you say to people like it's hard?

Yeah, it's really hard. And I would say, again, lots of people we hear so often from people who have been given leaflet for hormone therapy. And they phone us up and they say, I'm really scared to start this because of the long list of side effects that I might get. And again, it's having that conversation. We don't know. We don't know. if you're going to get any of them, if you're going to get all of them and what severity. But again, I think it is about sort of having that permission that it's not trivial and it's really important and you can go back and have that conversation if you're struggling and there are options.

And in the context of breast cancer, we know about 70 % of breast cancers are treated with endocrine therapy, like Lou said, anti-oestrogen or anti-hormone therapy and They're either tamoxifen or aromatase inhibitors. And many people are sent away and they're told to just get on with it and take those medications. And then people are faced with many symptoms. They don't know where to go to sort of help and manage them. And when people are very alone with their decisions, many people might then stop the endocrine therapy and actually the compliance rate isn't very good at all. And so I think if we provide better menopause support for breast cancer survivors, we can support people to perhaps stay on the treatments that are really important for them. And whilst they do so have a better quality of life because we go through so much. And if there are some quick wins for whatever symptoms, not all of them are as easy to treat as some others aren't there. But some of them are easier to treat than others. Why not?

Yeah. And just to give credit, I mean, I feel like this has really been changing, is changing at the moment. I know my hospital have been amazing actually. I've been offered psychological support, I've been offered acupuncture, I've been offered to be put in touch with various different services and things that might help. you know there is some support there, I know it's different in all hospitals but hopefully things are changing.
So let's move on to some of the more specific questions that I'm sure people will have come to this episode to find out the answer to.
Firstly, what's the difference between a natural menopause and menopause that's either induced by surgery or by drugs because of a cancer diagnosis?

So I suppose, as I explained before, natural menopause in the UK is average age of about 52. But lots of women will experience that earlier. And with a natural menopause, your hormone levels will slowly decline. So your body is adjusting, although there's lots of women who will go through natural menopause who really struggle as well. So, but I think with a treatment induced, so medical or surgically induced, it is literally like a switch. It's switched off overnight. Those hormones are literally stopped. And so the symptoms can be so much more severe, so much more abrupt than they would be with that natural decline in hormones.

And when did the symptoms end? Because I understand that with a natural menopause, at some point the symptoms stop?

They can do it, again, It's such an individual. Some, some, some ladies we speak speak to have gone on having, and again, I suppose going back a step is ladies who've been through a natural menopause who then go on to have a diagnosis of breast cancer can almost go through a menopause again, if they started on hormone therapy. So they can almost feel like I've been through this once and actually slap bang, I'm there again. And it can feel a lot more abrupt that time because you literally shut off any sort of form of oestrogen production. It's such an individual sort of there's no one way that somebody experiences and I think that's the really important thing. It's listening to that individual about how they're experiencing it. They do say that sort of after a number of years that things can get better for a natural menopause. I suppose again, with people that are going through a medically induced, if you're on hormone therapy for a certain period of time, whether that's five, seven, 10 years for some people, then it may be that that's increasing the load and it feels a lot more intense when you're on hormone therapy. But certainly again, it may not, it may stay after you've stopped that. So it's a really difficult one. I don't know if you wanted to add anything. Dani, from your experience.

I just don't want people listening thinking they're stuck. Because one thing I have learned is people say they come onto our program and we're with them for like 12 weeks and where they start at first is not where they end up in 12 weeks. And where you are now is not how you're going to be feeling in a year or two or three. And people's treatment plans change and oncologists can do much to maybe switch from one aromatase inhibitor to another. There loads of tweaks and little tips. people can implement to help with their symptoms. So as long as people don't feel they're stuck, I think that's the most important thing. Whilst people are on endocrine therapy, the hormone blockers, it's really difficult to wipe out all of the symptoms and maybe more people struggle than they don't. But hopefully if they know that there is support, a bit like you said, there's another appointment you could go to, or maybe to try acupuncture or to try cognitive behaviour therapy or a non-hormonal option. long as people know there is something they can try, that's okay. It's awful to think there is nothing I can do.

Yeah, well, we're definitely not coming into this podcast saying there's nothing you can do. We're going to go on to some of the possible solutions. But before that, what's the difference between perimenopause and menopause?

So perimenopause is that sort of stage, and again, this is talking for somebody who's not gone through cancer treatment. that's when the hormones are sort of almost fluctuating and so periods going to become more irregular. For some people they will still continue having regular periods but they will start to notice some of those symptoms like the hot flushes, maybe sleep's affected, some of the menopause or post-menopausal symptoms that you will get and that can go on for a period of about 10 years for some people. So there is that sort of up and down of am I sort of heading towards the menopause, am I not? So, and again, it really is that sort of defining moment of once your periods have stopped and you've not had any for 12 months, then you are sort of classified as being after that one day post-menopausal. So we talk about, so you can be perimenopausal when you're in that period of, you still have periods, but they're fluctuating up until the one day, which is menopause, which is when your periods have been stopped for a year. and then after that you're postmenopausal.

So is it technically incorrect to say I'm menopausal? You're actually, I'm postmenopausal. Okay. But that's the thing that we've only really started talking about in the last 10 or even five years, isn't it?
So it's totally forgivable to say you're menopausal. One of the most common effects of menopause is hot flushes. I am having one now. So this is the perfect time for me to ask this question. What are hot flushes and what causes them?

What causes them and again, feel free to add into that, Dani, is the dip in oestrogen. So, and it causes all those sort of vasomotor symptoms that

What does vasomotor mean?

Sorry, sort of just the sweats, the night sweats, the hot flushes of just feeling the heat coming down on you. And there will be bit of a theme for most of them. It's that real sort of dipping oestrogen and that plays such an important part. in sort of how we function as women really. So that brings on, yeah, that sort of intense hot flush that you can feel. And as you were saying earlier, some people can get them less frequently, others can get several in an hour and be absolutely drenched. And again, for night sweats as well, people can wake up in literally. pool of sweat. I've spoken to ladies who literally sleep with a towel under them because they will wake up or have to just go and get changed in the middle of the night because they wake up completely soaked through really.

And what can we do about them?

So there are different options and obviously we've spoken about HRT for women who haven't had breast cancer and there are sort of lots of non-hormonal lifestyle changes that you can consider to manage hot flushes. So we know that again, it may be as simple as triggers. There may be particular foods that might trigger it. Caffeine, alcohol can certainly be sort of things that you can do about it. Keeping a healthy weight, being physically active. We know that certain forms of exercise can help or yoga. Cognitive behavioural therapy can be really good at controlling. hot flushes. And then there's sort of prescribable, so prescription drugs that are not hormone, so non-hormonal therapies that you can go to your GP or treatment team. So there are a certain form of sort of pain painkillers and antidepressants that you can use. antidepressants, often people again, will feel that they're being prescribed those because of mood and they may well be prescribed them for mood, but they're often prescribed in a much lower dose and can be really effective. The flip side is when you've gone through a breast cancer diagnosis, you might be on medication that's giving you side effects and then you suggest that an antidepressant might be another option.
Lots of people will say, actually is that something that's going to give me more side effects? I suppose it's what Dani was saying, it's going with an open mind and trying it. might be a bit of trial and error. There are another drug called oxybutynin, which can be given for an overactive bladder, which can be very effective for hot flushes as well. So there are lots of options and there are newer kids on the block, are, I'm going to get it wrong now, neurokinin 3 receptor antagonists. I've got that right, haven't I? Which are sort of just emerging. There is one drug called Fesalinitin that is available but currently because the trials didn't include people with breast cancer it's a bit more tricky in the NHS for that to be prescribed. There's another one that is coming through I would say with it hopefully fingers crossed within the next year called Linzanitin which has had breast cancer patients included in those trials. which is showing that it's safe to give to people. So I think we're in a really exciting time and there are more options. So yeah, it's just, I suppose, knowing that there are and having those discussions with your treatment teams, your GP about what those options are and possibly a referral to a symptomatic menopause clinic, which, a menopause clinic, which again, Dani will know this, are really sort of patchy across the UK and waiting times are significant. But actually, if you can have that discussion with a menopause specialist in discussion with your treatment team around what might be a suitable option for you, it's worth an ask saying, can I be referred to a menopause specialist?

I think it depends how much each different sign or symptom is bothering you as well. Um, cause for me, you know, you just mentioned loads of things you can do to not have hot flushes, but I do all of those things and I still have them, as I said, several times an hour, at least, least once now, but when it's hot weather, particularly several times. Um, I do agree that certain things trigger it like spicy foods, alcohol, definitely. Uh, but even when you avoid those things, you can still get them. But for me, I am already taking so many different medications for so many different things. that I don't really want to test out a new medication to try and get rid of hot flushes, because again, there might be more side effects and things. for me, there are certain things that I think, okay, maybe I can live with that and not try a new drug. But I know there are people out there that say the hot flushes are just unbelievable. I can't bear them. It's the worst thing. I'm sweating so badly. And if that's you, then... it's probably a good idea to ask if there are any medications you can try.

Well, I think you described so beautifully is how everyone is so different. And we just don't know how much a symptom is bothering a person. And we're also no one should judge you because there will always be someone else who has loads more hot flushes than you. And there will be people who have never had a hot flush. There is no point in comparing. What's important is to kind of like have a cup of tea with yourself once a month, every now and then, and just sit down and check in with yourself because We're so busy. I think when we then turn up to our doctors or lovely nurses and consultations with Lou, we're like, all of this is happening to me. And I think we need to slow down and maybe look at all of the menopause symptoms and fill in the symptom diary and really understand what is going on with me for me and how are these symptoms impacting me. Because if someone is having loads of hot flushes and they're trying to return to work and they might have to have meetings and they're coming out with all these hot sweats and sometimes People have heart palpitations and they feel a bit faint and dizzy. If that is you, then they are really going to impact your confidence and that confidence may stop you from actually having a successful return to work. So it's important to think what is the knock-on effect of those symptoms if it's about sexual health. It's not just the sexual health symptom itself. What does that do to your relationships? And I think we owe it to ourselves to think, who am I, what's going on for me and what do I want to do? And I hear you. Some people are really happy to take medication, aren't they? And some people say, I've had enough, I don't want any more. And then it's looking at maybe there's acupuncture, you know, we've got really good evidence that acupuncture could help for hot flushes. And if you can get yourself somewhere, if you have access to it, if you can pay for it, it might be a great option.
Yeah, it's good what you've explained, because I think people at home will resonate.

Yeah, it's totally, again, I've been having acupuncture. acupuncture for years. And it's really hard to know whether it's potentially helping and I'm having less hot flushes than I would have been having if I wasn't on the acupuncture. But it's so hard to know when you're used to being on something. I've written myself a note here, which is to tell the listeners that I do have a tip, which is I experience a hot flush as soon as I get into bed every single night without fail. And it's always like a really bad extended one that lasts for like five to 10 minutes and I'm boiling. So we're in a heat wave in the UK at the moment. So what I do is I take an ice pack from the freezer. I have one of those gel ice packs that sometimes come in food deliveries and I wrap it in a tea towel and I take that to bed with me. And I do that particularly in the heat wave at the moment, but it's also just a nice one for hot flushes because you can hug it to you. If you sleep on your front, you can put it in the small of your back and it just sort of sits there and just provides this slightly cool relief. So that's my one little tip.

Love it. Whatever works for you, right?

So another common consequence of menopause is its effect on our sex lives, which you've already mentioned a little bit, Dani, plummeting, libido, vaginal dryness or atrophy. Louise, what is happening there?

Again, as I said, it's a common theme that's going to, it's the reduction in oestrogen and testosterone can impact on that. But I think it's... bit more complex, it's not just what's going on with your hormones, particularly if you've had a cancer diagnosis. It's that psychological impact, you may have had surgery that's affected body image, hot flushes that are also affecting your sleep so you're feeling tired. So I think it is much more, you might have put on weight and things like that. I think it is Although hormones are the driver for that sort of the mechanical and the physical side of it, think the psychological side of that as well is really impacting. again, changes in your relationship, probably when you're going through treatment, if the communication is not there, if you're feeling tense as well and the physical symptoms of we do know that with the lack of oestrogen inside in your vagina, you literally it becomes the the blood supply is less to the area. the, probably not explaining this the best, literally the walls of the vagina become a lot thinner. They're much more likely to, and again, I've heard people speak on the helpline around just walking, doing physical exercise. It feels like sandpaper down there. So the thought of being physically intimate with your partner is just a no and you just sort of will literally sort of close up. So it's really difficult. It's just not so much on the sex and intimacy side, but actually quality of life and the impact on that.

And this again is completely different for everyone. it's even, you know, if we think that hot flushes are different for everyone, this is a harder one to explain how it's different for everyone because some people don't feel comfortable explaining it. So they'll... not talk about it and some people just can't explain it because it's so intimate and it's so individual that how can you possibly tell someone else how your vagina is feeling. in the community.

Are you going to ask me now how is your vagina Dani?

Not how is your vagina but how is the vagina of your community feeling?

Yeah

So I know you have a lot of conversations with people and you probably have more insight into this than many because you talk to people in your community all the time about the problems they are having in the intimacy department.

I do enjoy talking about sex and I think people enjoy talking about sex. Last year we launched you know our world menopause and cancer awareness day and one of our speakers is an oncologist, she's also a sex therapist and afterwards when we had the party everyone just gathered around her. They all just wanted to talk to her about sex didn't they? was quite extraordinary. People just want to have the conversations that I think as perhaps people with ovaries or women now, we haven't, we don't know how to have them. And so we're sort of learning to even speak about it. I think that comes first. No, the vaginas of our community aren't doing very well. The vulvas aren't doing very well. There's a lot going on. It's some people say, I just can't be bothered. I can't be bothered. I've got no libido, no sex drive. However, I am either single and want a new relationship, how am I going to talk about that? Or their inner relationship and their intimacy has changed, their physical relationship with their partner and they feel very guilty because they don't want to or can't provide anymore what was part of their relationship and they don't know how to get it back. And then there are always the physical barriers.
I don't have lots of answers, but what I do know is that it's easier to get the physical health. of a vulva and a vagina into a better state that is absolutely possible after breast cancer treatment or during breast cancer treatment, it's a little bit harder to get your mojo and your sex drive and your libido back.

But whilst there are, we'll talk about physical things that you can do, but whilst there are potential physical solutions or aids, actually the mental health, which you talked about, Lou, is such a huge, getting the mental health right again. is such a huge part of improving your physical health when it comes to intimacy, because actually, if you're going through so many things in your brain, if you're trying to have sex and you're like, but what if I die? But what if my cancer comes back? But what if this makes things worse? You know, there's so many things going through your brain.

So, you know what, I listened to a really good presentation the other day and the speaker was saying, if you're in fight or flight, it's very difficult. to have sex and feel turned on. You know, in the olden days, when people were shagging in a cage and a lion came, you didn't continue to have sex. You stop it. And so I think after cancer, I felt in fight of light for a long, long, long, long time years. Do you know what I mean? That horrible. I mean, you, of course, but I don't know, you know, people listening to this, they may not be in active cancer treatment anymore. They may, they may be in remission, but that feeling doesn't leave you that you're worried about your safety. And it is about trying to feel safer in your body to then be able to experience pleasure. but a lot of work goes into that. And it's a journey. And if you can't be bothered, it's one project too many.

Lou, what solutions, what possible solutions are there to all of these intimacy issues?

So in terms of I suppose it's in terms of the vaginal dryness. there are things that you can do to help. Certainly, I would say again, go to Dani's website, come to ours. We've got lots of information at Breast Cancer Now, but speak to your healthcare professional. Let them know that you are struggling. And again, that can be a really difficult conversation to have. And it goes back to that sort of permission of feeling guilty for bringing that up. But it's so important. There is moisturisers and lubricants and certainly, and I've heard so many talks over the last few years about keeping your vagina moisturised. You do your face every day. You should be also doing that with your vagina. So and that's not just internal, that's on the outside as well. Lubricants again for if you want to be intimate using those as well. So if that's going to help. And again, you'll probably have to remind me, Dani, it's that slip and slide that one of our health care professionals talks about. And I think it's the oil based and water based that you can almost get a sort of a much more comfortable fit if you are. going to be intimate with your partner.

Is it the double glide? Double glide,
Can you explain the double glide slash slip and slide?
Not slip and slide.

I like that word.

Can you explain the double glide slash slip and slide? I you can use an oil-based lubricant on your partner or your sex toy and you can use a water-based one on you and they have a different sort of texture. but because of the two different textures, there is a double glide effect.

Yeah, that's it. Not slip and slide. I'm of completely different.

I like it. This is new now, Lou. Sounds like a waterpark ride.

That's what I'm probably thinking of.

I like that you double queried it. We clearly need to explain that a bit better.

No, I hadn't heard the double glide theory before, so clearly I need to attend one of your workshops.

The other thing is, I suppose, is, I mean, certainly pelvic floor. encourage the blood flow to that area because that can also improve the health of the vagina and sort of that really can help strengthen the sort of skin and hopefully prevent it from breaking down. you mean,

sorry, do you mean pelvic floor exercises like the ones we do to not, wee ourselves?

Yeah, yeah. Yeah. So holding on for 30 seconds if you can sort of just regularly. So you're encouraging the blood flow can be helpful. The other thing that again for intimacy is sort of dilators and sex toys and they come in various and I don't profess to be an expert in that field but certainly sort of there are different materials, silicone based are generally a bit softer. I think, I don't know if the NHS still provides them but again I think it is there are lots of different sex toys that you can use which may help. And again, I know in speaking to other healthcare professionals on this topic, there are certain things that, again, if you are having sex with a male partner and you don't want them to go in fully, things like O-nuts, which again can feel that there's less pressure to sort of go in. The other thing I often say to people who ring the helpline and sort of say, I'm really struggling with intimacy. is it's not got to be full on intercourse. And it is, I suppose, small steps and building it and whether it's that physical touch to begin with. So it might be starting sort of hand holding, just sort of stroking and things like that, rather than having, again, I was at one of our events with a healthcare professional when they said it might be about having a buffet rather than a full on three course meal and just going for small bits and building it up slowly. rather than just going straight in because that can feel completely overwhelming for people.

What about if people just have absolutely no desire? You know, it's all good and well talking about ways to conquer your lack of, know, conquer any issues you might be having regarding having sex. But what if you just have absolutely no desire to have sex?

I can totally relate. It's really, really difficult. Vaginal oestrogen can help. We know it's very safe for the majority of breast cancer survivors. It's always the foundation to bring that oestrogen back into the tissues of the vulva and vagina. And there are loads of different forms and different types of products as well. And examination is always a good idea to be actually assessed by your GP or for someone to have a look what's going on down there. We talk about what we might experience, but it's might be really important to actually for a healthcare professional to actually say what is going on and to help us then be prescribed the right treatment. We can get referred to a psychosexual therapist. I think that would be amazing if people can access services like that. It depends how much you want it and how much it is an issue for you and how much you want to make it a project. What I do know from speaking to some people, it's absolutely possible to have a very beautiful sex slave and experience pleasure, but it will be different to what it was before. And what about,

oh sorry Lou.

Yeah, I was just going to come in on the point about vaginal oestrogen. So certainly, and again, I think this is somewhere we've come a long way from in, it was an absolute no only a few years ago. And now for people, certainly we would always say, have a discussion with your treatment team. For tamoxifen, Certainly again, that's something that you can talk to your treatment team about and usually vaginal oestrogens they will prescribe. Aromatase inhibitors, there's still that absolute sort of, I would say, certainly in the guidance, it's have a discussion on your own individual sort of features and type of breast cancer so that they can have a discussion around the risks and benefits for you. But again, if it's significant for you, it's weighing up those risks and benefits with your treatment team.

I know from a metastatic. cancer point of view, it's always been a no from my team for vaginal oestrogen. I have had conversations about it and we've had a discussion around, you could try it if you wanted to, but there is a very, very small risk. And for me, I don't want to take any risk to my cancer. And I think a lot of people would be in the same boat in that way. But just going back to Danny, you mentioned people might be in a new relationship.
And I did experience before my, after my primary diagnosis, I did have new relationships as a person in my 30s, having had breast cancer. But what would you say to people who are experiencing things like severe vaginal dryness, who are perhaps dating and having new relationships? there ways, is there anyone in your community who's come up with some brilliant ways to introduce that conversation?

I think for most people when we talk about it, it's then, usually less about just one symptom like the vaginal dryness. It's wrapped up in a whole identity shift. Who am I now? How confident am I in my body? You suddenly come with lots of scars. Your body image has changed. How do you show up? When do you communicate it? I mean, do you put it on your hinge profile that you've got one boob and a dry vagina? Maybe not. But when do you bring it up on your first date or when you are at home already with this person? So it's so individual. But what's really helped is for these people to get together. And often they have a real good laugh about dating, how much to disclose. It's kind of like, don't turn to all of your friends who are dating and they haven't had all of that baggage of a cancer diagnosis and early onset menopause. Try and find a couple of people who are in a similar situation.
Yeah. Because then it can be fun. You need to add a little bit of fun into this because it's tough enough as it is and you don't want to do it on your own.

I know with me, I... Um, so I had a lot of experience and actually I did put it on my plenty of fish profile, but this was in 2013. But I did do the whole single bald female thing, which was what, uh, inspired my novel single female and ended up writing about that. But anyway, that's a whole other story. But 10 years later, when I met my husband, I actually told him about, um, how my breast cancer history on our first date. know, I think it was probably one of the things that really connected us because. He understood, you know, everyone understands cancer and he wanted to ask questions about it and he was interested in it and he sort of had that. I just felt like, because we went past the small talk of a usual first date and we went straight onto something that was quite serious and in depth and I think it helped us to get to know each other and we're still together five years later, so. It was obviously a good one. And I think if you do bring it up early, the fact that you've had breast cancer or you have breast cancer, it is quite an easy way to weed out who's a good person and who's not. Because if someone's really dismissive or they don't want to know, or they move the conversation straight on when you do want to talk about it, then they're probably not going to be someone that's necessarily going to be that supportive if you are continuing to be affected by the cancer.

He's a lucky man. He is indeed. yeah, so we've kind of talked about vaginal oestrogen because of metastatic breast cancer. So if you can't have the vaginal oestrogen, Dani, you mentioned things like psychosexual support. Also, I believe there's pelvic physiotherapy, which Would that be Lou what you were talking about regarding the pelvic floor exercises?

I suppose it's one step further from that. will probably it's with yeah and that's certainly again available within the NHS but I if I'm completely honest don't know exactly what they do at pelvic physiotherapy. Do you know Dani?

I think you get an examination which is really helpful because sometimes it could be other things that are at play to give you those symptoms. We can't assume we know what's going on down there. So it's always helpful. have an examination. think one thing I know is from speaking to hundreds of healthcare professionals in the UK and globally and patients of all different stages of a breast cancer experience, things that are done very differently. There are many people who are in your situation who thrive on vaginal oestrogen and they get it prescribed by their teams and then there are many people in your situation because I know there will be people listening to this thinking, But I've been said, yes, it's absolutely fine. And then there are many people who have been told no. So what we do know is when there isn't the evidence isn't that clear, there is little room for interpretation. then doctors and clinicians interpret those things differently for their patients. And that's just where we're at. What's really important is that like Lou said, you get that conversation with people that know about you, your history, the other medications you're on, other things that you need to. and considered so that people get that individualised conversation.

And it's also again, going back to the conversation around the hot flushes, it's the deciding how important that thing is to you to be the thing that you want to go further and potentially take risks to to treat. Because if for you, you're completely sexual person, it's the crux of your relationship, it's the be all and end all, you really want your sex life back, then maybe you have to take a tiny risk. that is to try vaginal oestrogen when perhaps it's not the most recommended thing. But if there are other things that you really need to get fixed above all else, then maybe that's the thing you focus on. And actually with anything we do, isn't it, apart from maybe diet and exercise, there is a hopeful benefit to any treatment and there is perhaps a contradiction or a risk and whatever that is, everyone needs to decide. Even with an ibuprofen or cycling without a helmet or drinking alcohol. or being overweight. There are so many risks factors to life and nothing we will ever do will be there. This is going to make my cancer come back. I cycle without a helmet and my husband thinks I'm crazy because I turned down the tonic water that contains sugar. he's shaking his head. He's like, your risks of being knocked off that bike are much worse. than a bit of sugar. Dani, are you mad? But it's how I weigh up my risks and my benefits to my life and they may not make sense to others.

Yeah, I totally get that. We're all very individual. Let's move on and talk about fertility or loss of fertility. So Danny, you had three children before you went into early menopause, but many of the women who we talked to, me included, were made infertile by cancer treatment before we could have children. and that can have a profound emotional effect. What are the fertility preservation options for women who are facing being put into menopause? So perhaps they're facing going into chemo or starting something like letrozol and zolodex, but who would like to have children?

Yeah, and I think it is a really important topic and a really important topic to bring up as soon as you possibly can. And certainly when I was in clinical practice, it would be brought up. for younger women at that very early stage, even at sort of the diagnosis appointment, saying what treatments may impact on your fertility and referring on to a fertility preservation unit to have those discussions. Now, it might be that you are put into a menopausal, a temporary menopausal state. So if you're on hormone therapy, you could be on tamoxifen or one of the aromatase inhibitors for five, but up to 10 years. So again, if you are in your late 30s, early 40s and you're talking 10 years, you're going to be in your late 40s, potentially 50 by the time you're finishing that. So I would always, even if it wasn't going to have an absolute long-term impact on the fertility, it's really important to go and talk through your options. There are the option of not doing anything and waiting and seeing. So people, if they're having chemotherapy, you can have Zolodex to put the ovaries to sleep, which has got a slight protective effect. And then when the ovaries sort of reawaken, then you could try naturally. But again, we usually say with chemotherapy, can take a couple of years, to a couple of years for your periods to return. And the nearer you are to your menopausal age and nobody knows what their natural menopausal age is. chemotherapy can bring that age forward by about five years. So there's the natural. Then there is sort of egg preservation. So you can preserve your eggs or you can preserve, if you've got a partner, you can preserve an embryo. So, and they can be stored up until a point when you decide, or if you decide you want to use those. Again, there is recent studies that are looking at people who want to stop their hormone treatment if they have got a hormone driven cancer after a period of two years if they want to try to have a baby in that time and that's the positive trial. it's safe. The other thing is people ask, is it safe to get pregnant after I've had breast cancer? My breast cancer was hormone driven and is that not just going to feed another cancer in the future? And again, many years ago, I think we were much more cautious as healthcare professionals around that topic. And certainly when I started as a breast care nurse in the early 2000s, people that had oestrogen receptor positive breast cancer were not referred on to fertility preservation for that very reason. That's not the case and the evidence doesn't show that. So we know that it is safe to go on and have a baby after a breast cancer diagnosis.

And I suppose there are a lot of women who were diagnosed with breast cancer for the first time. while pregnant or in pregnancy or having just had a baby. But the advantage of if you've had breast cancer, you've done fertility preservation and you go on to get, try to get pregnant after that is that you are going to be monitored. You're going to be much more aware of anything, any changes, any signs or symptoms that you can get checked out and seen to.

And it can be a real, again, if we talk about sort of the emotional impact on that, it's huge. And I speak to lots of ladies who come to our support events who are younger, who, again, that sense of loss. And you might have plans in your head of where you wanted your life to be. And then you see all your other friends at that stage getting married, having children. And certainly I've spoken to lots of ladies around the uncertainty. will I ever get pregnant? Will I ever have children? I think it's really hard for, again, being pregnant and getting a diagnosis of breast cancer is extremely rare. But when that happens, again, it almost, you don't have the option to preserve your fertility because you're pregnant at the time you're going through your treatment. So it's sort of living with a whole host of emotions because you feel... I've spoken to ladies who say they feel guilty because they've got that child, but actually they might have wanted another one and has that been taken away from them? And being in a room with women at different stages, some people that might have had a child before their diagnosis, but are absolutely longing for another child. And again, that option is, an uncertainty for them.

Absolutely. I've met lots of people and some we've interviewed on this podcast as well, who have had a metastatic breast cancer. diagnosis, sometimes de novo, so where they were diagnosed and it already gone to stage four or incurable. And it's, they're just told, I'm sorry, you this, you start on the hormone treatment, the ovaries are shut down and there's no prospect of ever coming out of that. And some of those women have really wanted to have children and they felt that this future is just completely. shut down, know, they're never going to be able to stop treatment for long enough to go through a pregnancy in order to bring a baby into the world.
What support is there out there for people in that situation and not just women, but you know, partners and families around them?

Yeah. So again, I mean, we've obviously got the helpline here at Breast Cancer now. So I would urge anyone who's listening, who is really struggling, having that individual conversation about their situation and signposting on to and having that conversation with their treatment team, I think it goes back to that because it might be that again, they feel for them, they're going through that treatment and as you were saying Laura earlier, it sort of you feel really grateful that you are on these drugs that keeping you alive. But this is massive. This is such a big thing and letting your treatment team know the impact that might be having and signposting on for emotional support. Certainly we just touched upon being pregnant. when you've got breast cancer diagnosis and there's an amazing organisation called Mummy's Star for people that are diagnosed during pregnancy or within 18 months after their diagnosis. certainly there is good support out there and if you ring our helpline we can sort of again signpost people on to the most appropriate support for them.

Let's talk about low mood and depression because those you know the the thought of not being able to have a baby and losing the life that you thought you were going to have because of breast cancer all feeds into mental health. How does and why does menopause affect our mood?

Same old story, isn't it?

Yeah, declining hormones. But why? How does that work? Well, you're asking the physical side, which again, I It plays such a part in all of that regulation, the hormone regulation, the balances, I suppose, when you're taking it back to periods and you have those sort of fluctuating hormones and how we change. Going through the menopause, again, because that's a decline, it just impacts those levels of emotions. So, but again, as we said before, I think on that sort of impact on libido, sex and intimacy, it's not just the hormones. It's also, is it the treatment that you're taking that can impact on your mood? Is it the emotional impact of your breast cancer diagnosis? Is it processing what you've been through? Fear of recurrence, maybe impact if you're struggling with fatigue as well. All of those, I think it's not just one thing at play. It's multifactorial and it's difficult.

And we know from healthy women navigating perimenopause, the anxiety. and changes to their mood is one of the first most prevalent symptoms before other physical symptoms come in. If you then add cancer to the mix, it's probably quite normal for people's mood to change and for them to experience low mood. What's important is to differentiate when does low mood happen, when is it normal? And when are we talking about depression? And what do we need to put up with? And when can we seek the help? And I think that is really important because I myself was struggling mentally for a long, time and I always thought it's normal because you've gone through cancer, you've got three kids. I was petrified and terrified of living my life after my diagnosis and treatment and so I thought it's absolutely normal, it comes with the package. Then menopause muddled its way into my experience and I thought, well, it's absolutely normal. It's just, that's just one of those things I'm going to put up with. Looking back, I know now I was very much depressed. I didn't just have low mood and I should have had support, more support. The reason I didn't have support is I didn't go and tell my doctors how much I was struggling because I kind of thought it comes with the package. Looking back, I wish I had had an antidepressant to help me some of my darkest years because I wasn't doing very well in my days and my days weren't normal and it was more than just putting up with it. And I think I could have had some help and that would have been okay. just because you've been through all of this and you've now got anxiety and low mood, doesn't mean you shouldn't have to help. And that's the most important maybe message to get across.

Okay, brilliant. So we've got possible antidepressants and then what about talking therapies and you mentioned CBT earlier as well. Where do we start with all of those things?

I think wherever people are feeling they can make a start. Someone listening might think, I don't even know where to start with talking therapies. That's not for me. No one in my family has ever gone through counselling. Maybe they need to visit their GP or it could be the other way around that they have actually good access to talking therapy and they say, I don't want any drugs. I don't want to talk about it. I don't even want to know what there is. But it is making the point of either being assessed and getting a diagnosis and then understanding what your options are. Yeah.

And even I just think Is it support? Is it things like peer support that can be hugely helpful of that being around people that get it and understand and not saying for the depression, because certainly you need professional support for that. But that low mood and anxiety is talking it through and maybe sort of maybe that will be the light bulb moment to say, actually, this is more than just a low mood and me just processing what I've been through and what I'm going through in discussing it. in those forums certainly with menopause and cancer and we've got our peer support service for people affected with primary breast cancer.

Yeah I think that can be as effective, talking to people who are going through similar can be as effective as talking to a professional one-on-one about your own situation. Dani what services do you offer for women to come along and talk about their menopause and cancer with other women?

So we want to really offer them lots of different platforms. You know, in some countries or in some parts of the UK, there aren't many charities. People don't always know where to go. So we offer online workshops, coffee mornings where people can meet. One of my favourite things for them to do is go and walk and talk. So we've got about 80 trained volunteers out there in the country and they offer walk and talks. And I think there's something really therapeutic about going for a walk and you don't have to look people in the eye and it's not all intense and you're walking side by side and you can just share. what's going on for you. think that is a really therapeutic way. And I think it's really important to move because we haven't even talked about movement, but that can be so, so helpful in lifting and boosting our mood alongside of exercise. So I think goes hand in hand a bit of that chatting to people that know what you're experiencing, moving your body, being out in the fresh air can go a long way.

Well, yeah, that kills the two birds with one stone. So was actually about to come on to exercise and nutrition. So Exercise and physical activity can really help with the signs and symptoms of menopause. They can also help keep cancer away in the first place and help keep cancer coming back. So exercise is a no-brainer.

Where do we start with exercise in terms of helping with menopause? And is it different from exercise pre-menopause?

So, yeah, so we do know there are certain types of exercises that you do over a certain amount of time over a certain period. It's an exercise prescription. that can help with certain symptoms. So we certainly know that for fatigue, anxiety, muscle loss, for example, that happens through treatment, there are certain ways of exercising that can help and combat that, as well as low mood and anxiety. Fatigue as well, isn't it? So we do know there are exercise prescriptions, we just have to talk about it as seriously as it is, because it's a, you know, we take things very seriously when our doctor prescribes something. But exercise should really be prescribed because the evidence is very clear. Now the difficulty for people with cancers, if your joints are aching, if you are exhausted, if you haven't slept, if your mood is low, if you haven't got any mojo, to drag yourself out of bed and then go for a walk and do all of the many things people tell you to do can feel a bit much. Did you exercise throughout?

Do you know what? I didn't do loads of exercise during chemo. but I think pretty much I've always been an exerciser, so I found it really, really helpful. Actually, the most difficult period for me was after having a big surgery in 2023 when I couldn't exercise. That was when I got really down and depressed because I need exercise. Exercise for me is the one thing that really helps my mental health above all else. So not being able to exercise because I needed to do this rest period was really, really tough. But the big thing that I'm going through right now is that due to the menopausal effects of my treatment, I now have osteopenia, which is the loss of bone density, not quite osteoporosis, but osteopenia. So I have been prescribed weight training exercise, strength training exercise. And I know you've talked about that quite a lot on your podcast with different professionals, but it's one that a lot of women... in their 40s, 50s and older are getting used to doing because it just wasn't when I was growing up it was more about cardio and I've always been I've always loved cardio.
Yeah.

But now I'm getting into the gym and it's quite hard to know where to start. Do you have any resources in that area?

Well we know that exercise pre cancer treatment can help and it makes us almost a fitter person. to endure the cancer treatment and then we last and do better on the cancer treatment and throughout surgery. To exercise during treatment, not loads, but whatever people can do and what is comfortable for them and where they feel safe in their body helps them stay on treatment and helps them stay and tolerate that treatment. And then afterwards it's really rebuilding your house. It's our home, right? And as you talk, it's the muscles, it's the joints that need lubricating, it's good for our mental health. The way to start is what you feel comfortable with for now. And I do also think people need a bit of help because you talk about an exercise, you are prescribed the weight training. Well, we can't suddenly know how to do that. We weren't told. And so who can support us? Who understands how people with a history of cancer or who are on cancer treatment can exercise safely? And there are lots and lots of gyms now that have cancer exercise specialists. And I think it's... reaching out for help. I wonder if we ring to Hotline, you can talk people through that.

I mean, and again, I think we are at a point where the research has been coming through in the last few years about the benefits of exercise. And I was at a conference where for the first time, would say is, that they're almost sort of diet and physical activity are put on a par of how come those two support people going through treatment, whereas it's not an a nice add on. It's really important.
And actually, think when you talk about the prescriptions, I think as healthcare professionals, it may not have been brought up because they're not quite sure what as a nurse, I would be like, well, how much exercise is good? What sort of exercise is good?So I think we're again, at a turning point where it's really important that these conversations are happening. And you talked about pre the pre-habilitation is a real sort of again, a thing that's coming into the forefront about making sure people are knowing what to do so that they get through their treatment as healthily as possible as they can. So certainly, absolutely, they can ring our helpline and we can signpost. And we're hearing about certain pilots and projects that are around the UK that are sort of embedded into breast clinics that are supporting people to exercise throughout treatment and beyond. I would say again, it's really, can talk about sort of, yeah, walking is good, running is good, going to the gym is good. I think it's finding something you enjoy because if you don't enjoy it and you find it difficult, you're just not going to maintain it. So it's finding something that suits your lifestyle and suits you whilst is doing good, obviously, because that's how you'll maintain it.

But you you talk about bones and early menopause, if it happens before the natural age. of menopause like Lou said earlier before you're sort of in your early 50s can have a really negative impact on bones, on brain health, on heart health, and we've got to address it. And we don't always have more time to do exercise programs for all of these things and live differently, but I sort of pimp up all of my activities. I will always be out on a dog walk and you'll see me squatting, jumping, and just feeding weight training and weight bearing exercise into my normal day activities. I lean against the fence, I do push-ups. You know, I just do it as and when and we sometimes squat around the office, the table in the office and we do our walking lunges and I don't think it needs to be lots and a huge project, but little and often can go a long way.

I love that. I sometimes do the one leg, I don't know if it's called a deadlift.

Can you do that?

One leg squat while some brushing my teeth.

Amazing. Try and just, you know, try and do that.

Squat while you're doing the dishwasher.

Yeah. Well, you have to. It's the only way to do the dishwasher. What about nutrition? What kind of diets do we do? We need to be changing our diet when we have breast cancer diagnosis and subsequent menopause?

Well, I did all of the wrong things when I was diagnosed and I changed my diet from one day to the next and I removed, I think, seven or eight major food groups from one day to the next. And don't ask me what I was eating back then. But I do remember that people where I live came up to me and said, Oh, Dan, it's lovely. had fish and chips yesterday, didn't you? And I was like, no, we don't eat fish and chips. I cook courgette spaghetti. Everything is green. And I think my lovely husband, Tim, took the kids to the fish and chip shop without me knowing after I'd served them courgette spaghetti. And so I think people do all sorts of things. And and the advice doesn't necessarily tell you to do all sorts of things, does it, Lou?

No, I mean, there's no magic sort of remedy really. It's a healthy balanced diet. The Eat Well Plan is one. The Mediterranean diet is generally, I would say, sort of seen as a healthy balanced diet where you've got multiple food groups, lots of sort of predominantly lots of veg, lots of fruit, lots of colour on your plate really. I think again, guilt is often associated with what happened. Why did I get my breast cancer? it's sort of lots of people through personal choice, like you were saying, Dani, might choose to eliminate certain food groups, do different diets. But there really isn't. It's just having a healthy, balanced diet really that is really important. We can't say for certain what it was that drove that, but we do know it's, we get so many calls through the helpline of what should I not be eating? Should I avoid certain food groups?
There is no... Obviously we say in moderation certain sort of highly processed food, high sugar content, things like that really sort of to limit in your diet but not completely cut out. I think again going back to that guilt thing is after a diagnosis and when you're going through treatment for breast cancer there needs to be a quality of life. It's not an existence that I've got to literally eliminate anything that is potentially bad for me. If you enjoy a cream cake. every now and then, it's not a bad thing to have that. It's just having it in high quantities is not going to be very good for you.

But we do need to step up the protein, particularly in terms of bone health and gym strength training.

I think the protein has been very hyped up by our social media. I think one of the things that we do know that really benefits people with menopause symptoms is sticking like Lou says to very much the Mediterranean diet. And that is full of fibre. many, many people in the UK don't get enough fibre, whereas most people do get enough protein. And so a lot of people in the UK are fibre deficient and we do need good fibre to really support us and our symptoms and to help with everything. And it's not about adding lots more of one. It's really having over a longer period of time, a sustainable diet where you can add all of the goodness, where you don't deprive yourself of anything. And to really look at where is the evidence, like the World Cancer Research Fund does tell us to limit processed foods, it does tell us that alcohol is their carcinogen, it does tell us to not have lots of red meat, but some red meat is okay. So there are some really good guidance, you know, and the facts are very clear. So it's important to also think, why am I driven to do this? Do I just want to change my diet because of my mental health? A bit like Lou said, and I'm so desperately thinking I want to do everything. And then I would, think now tell my younger self, don't go so full out, you know, with everything, just make some informed decisions and what can you sustain as well.

Yeah. And one big common thing that comes up, even though we have this stereotype, we think of a cancer person as really, really skinny, actually when we go through menopause and cancer, it's very common to put on weight. And that can also affect your mental health as can all the other things. What are the, what should we be doing if we're experiencing sudden weight gain during menopause after cancer?

So many people say, Dani, I'm doing everything. I eat really well, I exercise. I might not sleep the best. I feel like I wake up, my cortisol is going around my body. I don't drink a lot of alcohol. I'm outdoors. I get enough steps in, but I cannot shift. the weight. And I think it's really important to understand sometimes whatever you do, it's like walking up a hill, there is a massive boulder rolling your way. That's what it feels like for so many people and they're not alone. And it can be really, really difficult.

You put on weight because you're maybe less active when you're going through your treatment, the treatments that you're on put you into a menopausal state, which make you sort of your metabolism go down. So trying to shift that weight can feel really, really difficult. So again, I think it is certainly not trying to do it on your own, speaking to your treatment team, whether or not there's a referral to a dietician that may be able to help you as well with your diet. So it's a tough one.

And it goes back to what you said earlier on in our conversation, everyone is so different. Some people will hear this and really worry because they're no having more weight and a higher BMI is not very great for our risks of maybe our cancer growing or coming back and that might really scare people. And then they think they do everything they can and it might not be enough. And so it is really about getting that support. And like with all treatments, whether it's a weight loss jab or anything else, there will be benefits to you, the individual, and there will be risks. And it's for every person to identify that and weigh that up for themselves.

We've covered so much and I know I still have so many questions and so many things we could talk about. Fortunately, there's your brilliant podcast, Dani, that people can go to. But is there anything for now that either of you would like to bring up, anything that we really particularly haven't covered or you'd like to tell people who are experiencing menopause and cancer right now?

I mean, I would certainly say if somebody's struggling with menopausal symptoms, they can contact us at Breast Cancer Now or Dani at Menopause and Cancer because I think it is having that initial conversation. We've also got brilliant information on our website and booklet Menopausal Symptoms and Breast Cancer. So there is information and support out there. It's just knowing where to go to access it.

And Lou we will put the links to the relevant resources from Breast Cancer now in the show notes. Dani, where can we find you and all your brilliant resources?

The best place to go is menopausancancer.org. It's our website. Everything is on there. If people want to connect to others, find support, read a fact sheet, listen to a podcast or meet other people in person, that's a great place to start.

Brilliant. Thank you so much. The question we ask everyone on this podcast is what's the one thing you'd like people to take away from this episode?

Oh gosh, to understand that most breast cancer treatments will push you into a menopausal state for a short period of time or forever. And that's a very normal side effect of treatment. And so we need to normalise talking about it and we need to normalise providing support.

Lou?

I would say don't struggle on your own, There is absolutely support out there and don't ever feel you're a burden for your treatment team. If it's impacting on your quality of life, it really is an important conversation to have.

Well, thank you both so much, not just for this conversation, but for everything you're doing within the cancer community. know, Lou with breast cancer now, all the resources that you provide are absolutely vital. And Dani, everything that you're doing with menopausal cancer is just so, so, so helpful, not only to me, but to so many women around the world and lots of men too. So thank you both.

Thank you.

Thank you for having us.

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