The Dr Louise Newson Podcast - 172 - Learning to make empowered choices after cancer with Dani Binnington

Episode Date: October 4, 2022

Dani Binnington was diagnosed with breast cancer as a young mum at 33. For the next few years her life did not feel under her own control amidst countless medical appointments, treatments and surgeries. After discovering she carried the genetic BRCA1 mutation, Dani chose to have a double mastectomy and at 39 she opted to have both her ovaries removed as several family members had died from ovarian cancer. Previously a jewellery designer, Dani then embarked on a change of direction towards yoga and healthy living, and she now offers programmes for women on menopause after cancer. Dani is on a mission to empower women to learn about their choices, seek out specialist menopause care and her goal is for every women to have the conversations with healthcare professionals that they deserve. Dani’s tips for women after cancer: Talk about it with the right group of people that understand what you’re going through Make time for yourself to check and understand your symptoms Continue conversations with your healthcare team and ask for specialist menopause care Learn all your treatment options, including hormonal and non-hormonal treatments, complementary therapies, lifestyle management, and how to avoid triggers. Don’t sit back, show up for yourself and be empowered. Be active in your own recovery. Visit Dani’s website at www.healthywholeme.com And follow her on social media at: www.instagram.com/healthywholeme/ www.facebook.com/healthywholeme The Menopause And Cancer podcast: Listen here on Apple https://podcasts.apple.com/gb/podcast/the-menopause-and-cancer-podcast/id1631842514 Listen here on Spotify https://open.spotify.com/show/3OhAwupemqzdI6sCXCZLSX?si=DsriNnCXSIee6i10Cd4kww

Hello, I'm Dr Louise Newsome and welcome to my podcast. I'm a GP and menopause specialist and I run the Newsome Health Menopause and Wellbeing Centre here in Stratford-Bron-Avon. I'm also the founder of the Menopause charity and the menopause support app called Balance. On the podcast, I will be joined each week by an exciting guest to help provide evidence-based, information and advice about both the perimenopause and the menopause. Today on the podcast, I'm very delighted to introduce to you, Danny Binnington, who some of you might have seen or heard before.

She's doing some incredible work, really, allowing women to make more choices and also to learn more, actually, about the menopause, the perimenopause, especially for women who've had breast cancer. So welcome, Danny. Thank you for having me, Louise. Oh, it's great. So I first met you, I don't know how long ago, maybe a couple of years or so ago. And I remember looking at your website, which is so lovely and calm and really inspirational, actually,

and thinking, wow, you just look the picture of health because I know you do look after yourself. And it is really important that we all look after ourselves. And you're very holistic in the way you look after yourselves, which indeed we all should be looking at your diet, looking at exercise and looking at your hormones as well. But things haven't always been quite so healthy. I know that and not quite so easy. So are you able to just talk us a bit about your journey, if you like, and why you're doing what you're doing?

Yeah, of course. So I think I kind of like ended up almost in this situation when I thought my journey with breast cancer would come to an end. And when I thought, this is sort of the last bit in terms of my treatment, a whole new other chapter had opened up, and that was my early menopause. And I had really good care, Louise. It was fantastic. All my care was under the NHS. It was brilliant. And at the same time, I realized the exact opposite is true for most women I speak to. And I became so outraged and infuriated that I thought, right, I've got to do something about it. But before I was diagnosed with breast cancer, I was a jewelry designer. And so in my case, my cancer diagnosis has really totally changed, not just how I live my everyday life, but it's changed my career. I'm now also a yoga teacher. I run programs for

menopause after cancer and so everything around me and about me has changed and people always say well you're so positive i love that about you but i wasn't always like that a lot of hard work and years and showing up for myself and looking into the right direction has gone into my journey for it to unfold the way it does i think in the early years and months after my breast cancer diagnosis i was so riddled with fear. I was so, so scared of a cancer recurrence. Our kids were tiny. You know, they hadn't even started school. And I wasn't waking up feeling amazing and I wasn't looking great for sure. And it was just all a big malarkey, really. And then I think the added pain for me was that I realized I'm a Bracobon carrier. And so that gave me more decisions I had to make for

my own health and from my future health and partly that meant a double mastectomy for me and it also meant me removing my ovaries when I was 39 so hence the early onset menopause yeah so how old were you then danny when you were diagnosed with breast cancer so I was 33 I found a lump everyone around me sort of said it'll just be a benign thing don't worry you're so young and so I even went to the appointment for my results on my own because I just thought there is no way this can be cancer. I've just stopped, you know, not long ago, I've stopped breastfeeding my twinnies.

There is no way I thought my life would go that way. And when we did get the diagnosis, after that, it felt like life was happening to me and to us as a family. And I would say it took years to regain a little bit of control back into my life. And then when it came to me having my ophrectomy, so letting go off my ovaries,

by then I was so empowered, I was the total opposite. But it took a lot of work to get there. And partly that's what I want to teach women today, that you can get from that feeling of being totally almost desperate, not knowing what to do, to a more empowered state of being. And often that's not even so much about getting rid of your symptoms. That might just be of teaching women how to navigate their health professionals

and the healthcare and telling them what's available to them. Yes. And I think that's really important, isn't it, choice? I think it's a really powerful word choice in everything that we do. We do have choices sometimes they're taken away from us. And obviously, you know, you didn't choose to have breast cancer for sure. And there is no way that you were expecting at such a young age. But then you have become a sort of advocate for yourself

and for your future treatment choices as well, actually. And I think that is really important in any area of medicine, actually. that we do the homework, if you like, and work out what is best for us. And certainly knowing that our treatment choices can change as well, because certainly at the beginning, you probably didn't really think much about menopause, did you? And understandably, it was thinking about breast cancer and your children and what the treatment involved and how you were going to watch your children grow up. And, you know, all those things.

Yeah. And also everything that has happened in my past, has influence and will always influence my decision-making process now and what will happen in the future. And the same is true for all of us, which is why even if you're a scientist or a doctor like you, there is no right or wrong because whoever is in front of you will have such a difference of baggage and experience that we bring in. So in my family, we've got a very strong link of ovaring cancer. We've lost many women before they turn 60 to ovarian cancer. Some have left children, teenagers is so, so sad. And one auntie, my last aunt to pass, was also diagnosed with ovarian cancer,

and her medical team has always said to her, for a long time I've said to her, you're post-menopausal, it's best to get rid of your ovaries, you're probably at risk. But her worry about being and becoming menopausal was too much for her, so she never let go of her ovaries. And we lost her to cancer a few years after that. And Louise, all I wanted say to people, it is a real rubbish place to be. No one wants to be in the cancer and menopause group. It's a rubbish camp to belong to. I understand. And at the same time, we must fear it, because life can be beautiful. And life can be so much, and we might not always feel the same. Like, I know I don't feel the same as I do before I was diagnosed. But life would be different,

and it can be good. And that's really, really what I want to get across. to women to not fear it quite so much. Yeah, I think that's, that is really important because a lot of people think that the more awareness that's been done about the menopause, the more that scary stories are being spread. And a lot of people have heard me talk about the mental health aspects and suicide and really disabling symptoms for a lot of women. And so I'm sometimes told off for talking like that and saying, well, actually, we're making people feel worse because they're expecting something really bad. But actually a lot of people don't have severe symptoms, but those that do, it's really important to know that there is treatment as well. And I think it's also, as you know,

it's not even always thinking just about symptoms, it's thinking about future health as well. And that's what's really important. And someone who's young and has an early menopause, has longer without their hormones, and actually often has a higher risk of heart disease, osteoporosis, diabetes, and so forth. So it is looking at the bigger picture and having the right tools to make the right choices, knowing what the risks are as well, if you see what I mean. So a lot of people I speak to who have had cancer are really worried about their bone house, but they don't know how to improve their bone density. They don't even know about vitamin D. And a lot of people think it's either hormones or nothing. There's nothing else. And, you know, hormones is one part of treatment for

the menopause, whether you've had cancer or breast cancer or no cancer. It has to be given in conjunction with looking at lifestyle and looking at exercise and well-being and sleep and everything else as well, doesn't it? I always thought when I was first then diagnosed with the Bracca 1 mutation that could give me more cancers, more varying cancers, more breast cancers. Initially, I was so shell-shocked by that because I really didn't want to have that knowledge. and it took quite a lot of mindset work to understand I can use this in my favour. And it's a little bit like that I think

with all the awareness work you're doing, sometimes you're in the receiving end and I've heard you talk about lots of stuff online in the last many years and sometimes you receive it and you hear the negatives because our mind has the tendency to go to the negatives is when I think back of my last week,

if I don't watch it, my mind will attach to what hasn't gone well for me and so it takes a little bit of retraining and changing our mindset to think, okay, so these are my risks, this is what could happen to me, and then thinking, I'm glad I know, because now I know I can do something about it, rather than just sort of absorbing the facts and thinking it's all terrible. I remember when I was preparing for my ophrectomy, I was walking down the street after an appointment,

so I saw two or three different surgeons, because by then remember I was empowered, I was that difficult patient. And this one doctor said to me, well, if you have this early onset menopause that young, your risk of cardiovascular disease and bone problems is almost going to be as high that you die of one of those things as if you get ovarian cancer. I was flawed. I can still remember the road, the pavement, and almost my world around me crumbling to pieces, thinking whatever I'm going to do is going to be rubbish.

I also remember on the same day thinking that is not going to be me. It's not going to be my future. I refuse to just hear this without being given real options. And that's where my spark got ignated to look into everything, from supplements to diet, to exercise, to HRT, whatever it might be, to cognitive behaviour therapy. And I suddenly realized, wow, there are, thousands of things, no, that's exaggerated, but loads of things that we can do at different

points that can help us feel better and feel good. And that's so important, isn't it? And I think sometimes it's not until something bad has happened that it makes us have a wake-up call and think, actually, come on, I've got to take control of this because otherwise you're going to be controlled by something else. And, you know, you don't want to be defined by your cancer or your Bracker status. You want to be defined as who you are and look at the whole of you. And so I think for those of you that don't know, let's just talk a bit about Bracker. So what does Bracker mean? And can you just explain a bit? Yeah. So because of our strong family history with ovarian cancer and because of the type of cancer I've had and because of my age, the doctor said,

ooh, we should get you tested. If you just have a mum who's got breast cancer, for example, it doesn't necessarily mean you might be at risk of having the BRCA mutation. And so this genetic testing involves counselling and you go through a whole protocol. And in my case, there's a BRCA 1 and a BRCA 2 mutation. And when you have that mutation, it means the repair in your cells doesn't work quite as much. And you're more likely to have ovarian cancer or breast cancer. But again, Louise, you know, if you can have breast cancer to say 60%, you might not for 40%. it's always going to be 100% for you, for each individual. And I never thought I'm unlucky

or why me. I always just thought, and what do I do now? So the whole thing about risk is really difficult, isn't it? Really hard when you know that, you know, you've got a high risk, doesn't mean it's 100% risk. And so with BRCA gene, if people have this gene, then, like you say, there's an increased risk of breast and ovarian cancer. So a lot of women have their ovaries removed because they obviously then don't have a risk of ovarian cancer if they haven't got their ovaries. But one of the problems is when people have their ovaries removed, they become menopausal on that day. And a lot of people, even some doctors sometimes think that the reason that people with brachina are having their ovaries removed is because they don't

want estrogen in their body. And that's not true, actually. It's more because of the risk of ovarian cancer. So we see and speak to a lot of women who have have breast cancer, but they've got this risk of ovarian and possibly breast cancer. So they have their ovaries removed, they become menopausal, and many are told they can't have HRT because of the perceived risks with breast cancer. Well, women with BRCA have an increased risk of breast cancer, but there isn't been any good quality studies showing that those women do have an increased risk of breast cancer from taking HRT. And a few studies, small studies in this area, have shown that women who take HRT following ophrectomy actually have a lower risk of breast cancer.

And if women have a hysterectomy at the same time and only need estrogen, then studies have shown these women do have a lower risk of diagnosis of breast cancer, but also dying from breast cancer. So it's very interesting. And in fact, somebody who told me yesterday that she'd seen a lady in a clinic who'd been told she couldn't have HRT because she was adopted. And the doctor didn't know whether her family had a, history of Bracker or not. So she was refused HRT for that reason, which I think is really

absolutely sad and barbaric actually. From day one of having had the cancer diagnosis, I feel like it was always a risk assessment of anything. Like in the early days, I had a second consultation about my initial surgery and I opted to have all my lymph nodes removed. And I had to sign a disclaimer saying at one point you could get a lymphodema or complications. of that. And it happened to me. And so even when I think back to all these years ago of my surgery, I was assessing the risks that there were benefits and risks to each of the surgeries proposed by my surgeons and both had quite different opinions. When I had my port fitted in through which I received chemotherapy, again, I had to sign a disclaimer to say they might rupture on my lungs. It happened to me,

six hours after my first dose of chemotherapy, my left part of my lung totally collapsed, and I was in intensive care for 12 days, where I had promised my children to be home that night. And again, the risks and benefits for me then were do I have a port fitted? I know there is a small risk of this happening, or will I have my chemo through my veins, which again brings risks with it? And so I feel, in a very odd way, I've all along been managing my risks. And they've always been really difficult. And I never thought it was a very positive risk management situation, but you don't have a choice.

And so many women who have their BRCA genetic mutation and they're tested, they don't choose to have a double mastectomy. They don't choose to have the ovaries removed. And so they're managing their risks differently with the history they've had, with the belief system they've got. And we've got to value and respect all of that. I opted to let go of my breasts. I opted to let go of my ovaries. I knew what that meant. And I knew I was going to have to manage the risks of that forever,

whether that's the surgery or my long-term health. And so I feel, don't we all just manage risks all the time? And I give you a very funny example of another risk assessment. The first few years after chemo, I threw myself into healthy eating and I probably got it all wrong. I excluded all main food groups. I was, sugar became a villain, all carbohydrates. I became vegan.

Like, I was so extreme because I just needed something to hold onto, right? Now I know I needed to replace the control a little bit. Anyway, I was cycling to the theatre with my friends. And one friend, a very good friend, looked at me and said, Danny, why aren't you wearing a helmet? You're so worried that sugar's going to give you cancers, more cancer, but you're not wearing a helmet. Like if I was going to evaluate your risks for you, I'd have the muffin and wear a helmet. And it just showed, it was so good for her to be that honest with me, because it just showed me that managing our risks is such a personal decision, isn't it? So personal. That's really great story because I think it's really difficult. And for those of you, some of you listening might realize that there is some controversial work regarding giving women,

HRT who've had breast cancer and some people are really taking the whole conversation to extreme and, you know, thinking that all women who've had breast cancer should have HRT or all women who've had breast cancer should not take HRT and there's nothing 100% nothing that we all do exactly the same every day and when we don't know answers or even if we do know answers it's still a good about individualised choice and we have some really good guidelines actually that nice brought out last year on shared decision making. And I think these are really pivotal for everything I do as a doctor, actually, about sharing any potential risks and benefits of having treatment, but also of not having treatment as well. And I think we really need to understand that.

And I think, you know, you've been very open, Danny, and saying to people that you have taken HRT, and that was a choice that you made. But also you were aware that there are risks to your future health of avoiding HRT because of not having hormones in your body. So a lot of women actually, or several women, certainly that I've spoken to, are more scared of the risk of osteoporosis or heart disease than the risk of their breast cancer coming back. And they want to minimize that risk as much as possible with lifestyle, of course, but also the choice of hormones. And actually, they know that that might be increasing their risk of breast cancer recurrence or even metastatic disease, we don't know. But for them, their main concern is, you know, their health and their

heart risk and their bone risk. And actually, that needs to be taken into consideration. It's about, it's like you, you know, your diet was more important to you than your risk of falling off your bike. Or being knocked off my bike. Knocked off your bike. So, but also risk, you know, how we perceive risk can change with time. So on day one after having a diagnosis of breast cancer, it would have been completely inappropriate to start thinking about HRT and menopause and everything else. But further down the line, things change and what you need and what you think about changes. And I think that's what's really important that when we look at consent, we're not consenting for a lifetime of something. We're not even if we decide to take HRT,

doesn't mean we're signing up for a lifetime of HRT. Nothing is irreversible. Sadly, having your ovaries taking out is irreversible, we can't put them back in. But, you know, diet, you've already changed your diet from what your extreme diet before, you know, how you choose to exercise, but also how whether you take hormones, some people decide to take them for a few months and then they can make a better decision on informed choice, whether they want to continue or not. And what saddens me is there's a lot of people that are refused treatment because their doctors or their nurses or their pharmacist or whoever they see don't feel comfortable. And I think that's really difficult because it's not for me to say, yes, you should have HRT. No, you can't have HRT. It's about

deciding together. And then I think the whole conversation about consent is really important. You know, you've had procedures and have been consented and you sign the consent form. A lot of time in our consultations, we use something called implied consent. You know, the fact that a patient is sitting in front of me means that she's consented to have the consultation, otherwise she wouldn't have turned up. And we do that with a lot of treatment as well. But actually, when we give women who've had breast cancer, HRT, there is a conversation that we've started talking quite seriously with some of our peers about, you know, should women be consenting? So they're more in control, actually. And for those of you who don't know, we've set up a clinical steering group through my education work, which is involved

by people who don't work with me in the clinic, but they are oncologists and radiotherapists and breast surgeons and patients. And Danny's kindly one on the steering group and also GPs, especially interested in menopause. We've got some other patients as well. And it's a great group where we're trying to come together to talk about some consensus to try and help with some of this uncertainty. And we're making some great progress. But one of the things we've been talking about recently is about the consent and how we can allow a better consent process for women who do want to take treatment. And I think this is going to be really important because I think it will help allow our patients to be in control because I feel very strongly with all my consultations

that I'm led by patients rather than me leading the consultation. And certainly, this is a generalisation, but a lot of women who've had cancer, but especially breast cancer, very empowered, they're very knowledgeable and they often know what they want quite rightly so they've been through a lot and you learn a lot every time you're a patient every time i've been a patient or my children have been patients i learn so much and i reflect a lot as well about myself my future my fragility and what we want out of our lives and so i feel that allowing women to be able to consent to something that they want that might have risks is actually quite good because then it puts them in control what do you think?

And I learned so much as well over the last few years because I can really clearly remember that you put a post out about a couple and I think on your Instagram it's a couple on there and you talked about the woman starting HRT after her estrogen receptive cancer and when I read the short blurb, it sat really quite uncomfortable with me

and I thought, wow, is Louise saying women should be on HRT after ER cancer because it's a short message and it sort of did something with me. I had an emotional response to it. And so I became really inquisitive. And only after speaking to this lady's husband, who said she nearly died of sepsis several times

because the symptoms of her menopause were so badly. And so our decision was so difficult, but we had to make it. And this is only one example. And I now speak to so many women who are pondering over these really, difficult decisions. And for me, it's really important to sort of stay judgment-free and really understand the person, like you say, and accept that they've all got their reasons for it. My decision happened quite a few years ago now, before the conversation was even available on social media, and I'm quite glad. And so partly, my whole decision-making process was

within the NHS, with the consultants at my hospital, where I had my menopause, specialist treatments, with my oncologist, with my surgeon. And all along, for years, they've been saying, because of the type of cancer, because you've had a double mastectomy, because by the time I chose to remove my ovaries, I was quite a few years on from my initial cancer diagnosis, they all were happy to talk to me about the use of HRT. I didn't feel I had to fight for it. And I think what's really important and key here is that all women deserve the conversation. that's what's important to me. Regardless of what they do with the information,

we deserve the conversation. And I feel that so many women, if they're being told you mustn't, we're always going to feel, oh my gosh, I'm really deprived of this treatment. And all my friends are swinging down the road and they've got glorious hair and they say,

HRT is just the best thing ever. And so it's going to make us feel even more excluded from the greater menopause conversation. If someone says, you must not. or there is no way. And I think if we just changed the conversation and gave every woman specialist care, which is what I'd so desperately like to work towards,

as part of her oncology treatment or as part of her breast care nurses' follow-ups, if every woman had the conversation with a specialist team to talk through all of our choices, all of our treatments, whether they're complementary herbal treatments, whether that's hormonal or non-hormonal treatments, I think that moves us into an empowered patient situation. Rather than a, you mustn't have this and we're not going to give you any options

because that's the reality at the moment. People are being told, no, you can't, and then they're left. And that to me is just not good enough. Yeah. And I hate to compare genders, but men who've had prostate cancer get a lot more advice and health and support and treatment actually often. They are offered their own hormone back. There are some testosterone and low doses.

And they are given a lot of support. So I feel that, you know, for women to just say, sorry, no, is actually not good enough. And also to be allowed to be part of this conversation and not just even the woman on their own. You know, the women can be supported by her friends and family. And, you know, no decision has to be made overnight. It's not an instant decision. And also, I think I have to be supported. have said it before that people are allowed to change their mind. I think some people think that

once they've decided one way or another that that's it, they can't change or because one doctor has said one thing, they can't go and get an opinion from another doctor or another healthcare professional. And I think that is actually really important to allow us all to have choices based on different levels of information sometimes is really key and not taking things out of context. And I think your comment about what you read on sort of my social media is very easy to just take something out and not see the bigger picture and not see the concepts. And, you know, like you say, for this lady who had had recurrent sepsis due to pylonophytis infection in her kidneys and she wasn't even given any vagina on estrogen was actually really affecting her ability to function. And her husband who was a urologist, he's now retired, didn't even recognize that he was. just some local vagina

student could be and actually was transformational for her. So there's a lot that we need to do, isn't there? Yeah, and you know, even if that one doctor who had given me such dire statistics

about my choices and my options, even if he had then said, but that doesn't mean this is your future. There is so much you can do by consistently showing up for yourself. Every day, by moving well, by eating well,

by jumping down and up the stairs, by supporting your bone health, By taking a vitamin D supplement, like you've mentioned earlier, I would have walked down that road feeling, oh, there is something I can do at least research. And I think sometimes it's just how we talk about things as well, that can open doors for people or close doors. And we want them open, don't we?

We want them all open. There's always something in medicine that we can always do. And it doesn't always mean that it's medication. But it is really, really important that people I felt listen to. And for those of you that have listened to the podcast, I hope there's been lots of information and just some food for thought, really. We're not here giving any answers. It's really just an open discussion. And I'm really grateful to you, Danny, for spending your time just being so open about your experience and what you've learned and become a lot stronger and different person with your experiences in the past.

So before we finish, though, three tips. So I'd be really keen for you to just share three ways that women can. could really move forward in their conversation. So if women who are listening or people who are listening know of women who have been, really, like you say, had the door closed on them and said no, what would you say? You know, how could they try and help this conversation move forward so they can be offered and listen to really for treatment that's right for them? So I'm not saying about whether they want HRT or not just any treatment that's right for them.

What be the best thing to do if people feel quite hopeless? I'm going to be a rebel and add a few more to you. or three. I've got a manifesto here for you. I think the first thing is we need to talk about it and we need to find the right group to talk about it. If we, after cancer, always follow the normal menopause conversation, we're always going to feel on the periphery. So it's important to find your group and share your experiences with the right people to understand what you're going through. Then it's important to make time for yourself and fill in a symptom checker, even if you are in the middle of

surgically onset menopause or if you're entomoxifen or something like that, is take time out to understand what is going on for you, which are your worst symptoms, which would you like addressed? And then we need to persist with our healthcare team. It's really key to go back to our GP and say we need and deserve specialist care.

Most of the women I work with, I send them to their GP and say, ask for a referral for a menopause specialist. And many GPs don't know menopause specialist. exist. So it's really important to empower ourselves and be quite persistent with your healthcare team. They will be able to talk you through your treatment options, whether they're hormonal, non-harmony medical options, complementary therapies, lifestyle, all the way to avoiding triggers, this deserves specialist attention. And then we need to empower ourselves every single day because it's no good

to wait and sit for an appointment that might turn up in six months time until then. we've got the opportunity that we can show up for ourselves every single day. And if that is reducing our stress levels or having the extra apple or walking up and down the stairs, whatever that might be, we can do so much by feeling that we're active in our recovery at whatever point that is. So yeah, sorry, I've added a few too many, but here you go. No, because it's all really important and really empowering stuff. So thank you ever so much. and I know you do your own podcast as well,

and we'll put links up there with the notes so people can hear more about your pearls of wisdom and great advice. So thanks ever so much today, Danny. Thank you for allowing us all to have the conversation. For more information about the perimenopause and menopause, please visit my website, balance, hyphen, menopause.com, or you can download the free balance app,

which is available to download from the app store or from Google Play.