This is a summary transcription of our podcast interview with Dr Liz O’Riordan, an international speaker, broadcaster and award-winning co-author of ‘The Complete Guide to Breast Cancer’. In 2015 (aged 40) she was diagnosed with Stage 3 breast cancer whilst working as a Consultant Breast Surgeon. Her life changed dramatically. She’s passionate about helping people and especially breast cancer patients. Click here to listen to the full interview.
Taking away the blame about breast cancer
We know from statistics that have looked at studies of women that if you are overweight, if you drink a lot, if you have an unhealthy lifestyle, your risk of getting cancer is higher. I drank like a fish in medical school like most junior doctors did, but it’s very hard to say the reason I got breast cancer was because I drank a lot. Often, it is just a combination of changes that happen at some time in your life and people feel awful when they think it’s their fault.
You can’t say it’s one thing that you did that caused this. Your lifestyle may have made it more likely to happen but skinny people still get cancer. Teetotalers still get cancer and I just want to take that blame away and say, having cancer is bad enough. You don’t need to blame yourself for that. Let’s just try and help you move on.
Estrogen receptor breast cancer
As a consultant breast surgeon, I never dealt with the menopausal side effects of Tamoxifen or the Aromatase inhibitors which lower the amount of estrogen in the body. I’d read the leaflets on breast cancer and I’d say you get a bit of vaginal dryness and hot flushes. It normally settles down in time, off you go.
We had a great GP who sat in our clinics who ran a menopausal symptom clinic. I didn’t have the time to sit in with her. I assumed the GP dealt with it. I didn’t get any training in it. I didn’t know other drugs were available to help women with the symptoms. But I could never imagine any woman having extra estrogen. Estrogen receptor positive cancer is kind of the one that’s often left out.
There are lots of new drugs coming for other cancers but for estrogen receptor cancers, when they come back, we still have the same old drugs, Tamoxifen and Anastrozole and it develops resistance and it can kill. I wouldn’t want to give my patients anything that might increase the risk of a recurrence happening. Estrogen doesn’t cause breast cancer but it encourages those cells to grow.
Coping with an instant menopause
Then I got breast cancer myself. I was put into an instant menopause with chemotherapy and when my cancer came back, I had my ovaries removed. An overnight menopause and I thought I’d wet myself because there was sweat trickling down my bum cheek. I thought, Oh my God, that’s a night sweat. I’m never going to have a full night’s sleep again.
The flushing and the stripping off, the vaginal dryness, and sex and intimacy issues overnight. I thought, how on earth am I meant to cope for the next 10 or 15 years? An incredible oncologist called Richard Simcock tweeted me to say, here’s a whole list of other drugs we can get you to help with the symptoms. I had no idea they existed.
That’s one of the reasons I wrote my book – to tell women that there are options available. You don’t need to put up and shut up. With vaginal estrogen, when I was diagnosed, most doctors said no extra estrogen at all. There was a study looking at the amount that is absorbed vaginally, and it is tiny and vaginal estrogen is now 10 micrograms. We used to give 25.
I thought, I need this as a cyclist. I was getting labia skin tears, riding 100 miles on a bike. It wasn’t just sex and intimacy. I thought even if there is a tiny risk, it will increase my risk of recurrence, my quality of life is so bad that I want to take that risk. I know it might increase the risk but I’m going to exercise, I don’t drink so for me, I thought that was fine. But I had to find a doctor who thought it was safe to prescribe it.
My GP was fantastic but a lot of people get batted back and forth. I knew it was a tiny dose and I knew that risk. A lot of women don’t have educated GPs or breast surgeons like me. They don’t know this help is available. They don’t know where to go. They don’t know what websites to go on. It’s a minefield and most of us will go to social media for information.
Understanding the risks of HRT
There is a narrative that HRT could be safe after breast cancer. We can talk about the details of the research and trials, but my concern is a lot of women are hearing it might be safe and it’s good for you and it will stop you dying of heart disease and dementia and it’s fantastic. And then not being told that there are studies that say it has shown an increase in recurrence.
None of the studies are great but women need to know, we don’t know whether it’s safe or not, so you can take that decision. Because if your breast cancer comes back and you took HRT, are you okay to live with that guilt that you or your family might experience? I don’t care if every woman takes it but I want her to know about all the alternatives and benefits of improving your lifestyle. If she’s willing to accept that real risk of an early death, that’s fine but I don’t think that message is getting across.
Staying curious about research
When I did my PhD looking into thyroid cancer, if I was using a scientific article, I had to read it and critique it and explain why I was using it to back up my theory and what was good and what was bad about it. If you write a book or you write an article, you don’t have to read all the papers that you reference. There’s no law. You may have seen one person said it and that was repeated and repeated and repeated. So I’ll just rewrite what they said about the study and put it in the book. And when journalists report on a new paper in the Lancet saying HRT is great, they don’t have to read the full study, they can just take the press PR spin.
Just because someone has quoted a study doesn’t mean they’ve read it or they believe it. There’s no way of knowing that and most of us will think, oh wow, there’s loads of papers in this. It must be true. Look at all the evidence. There’s one book written by an American oncologist, Avrum Bluming, called Estrogen Matters and it’s promoted a lot in the menopause online space. About why HRT cures everything. Estrogen is the saviour, you have to have it. And I’ve had so many women send me awful messages feeling they’re being forced to have it. They don’t want it, why is it being forced on them? So I look at this data.
Dr. Bluming says there are 25 studies that have been done looking at HRT, there aren’t many. But he says most of them show it’s neutral or safe. And I went back and they’re often done in the 1950s 60s 70s 80s 90s, 20-60 years old. And a lot of them aren’t done to actually look at HRT, they’re looking at the treatment of breast cancer. A lot of them only use women who are already two or three years down the line after treatment.
And this is really important, because breast cancer is going to come back. So the first couple of years, or it’s 10, 20, 30 years later, like Olivia Newton John. But if you make it to five years, your chance of making it for 10, 20, 30 is much, much better. So by only picking women who’ve been treated for two or three years, you’ve got rid of everyone who had an early recurrence. So the women you’re looking at are less likely to have a bad outcome. And most trials only followed women up for a couple of years. But we know like Olivia Newton John, it can come back 30 years later. And a lot of the trials didn’t tell us whether those women had estrogen sensitive cancers or not. So you can’t say HRT was OK, if they’re all triple negative, because those cancers aren’t driven by estrogen. And when you delve down, we don’t have good data to show that HRT might be safe.
Evaluating whether HRT is safe for breast cancer patients
Now, on the other side, there are a couple of trials and I’ve not done my deep dive in them, so I’m not hot on the stats, that showed HRT could increase the risk of recurrence. And again, they weren’t long follow ups. One trial was stopped early, because they were concerned about this. And the people like Dr. Bluming poopoo this study, say it only showed local recurrence. And that’s not the same as death, or metastases.
I had an early local recurrence. And yes, local recurrence can be cured, it can be cut out, it doesn’t mean my cancer is going to come back. But if you have an early local recurrence, you’re almost four times more likely, I think that’s right, definitely much more likely to get metastatic disease and die in the future. It’s always a marker that your cancer is worse than someone else.
So the fact that it didn’t show an increase in death doesn’t matter, the increase in a local recurrence is more likely to lead to an increase in death. Does that make sense? So they can’t say, oh, it’s just a local recurrence. It doesn’t mean anything. Those women are more likely to get metastatic disease in the future. And honestly, you can interpret the evidence any way you like to make it fit your hypothesis, your opinion, your story. I don’t think there’s ever going to be a good trial to compare a group of 1000 women with positive breast cancer and say, half of you are having HRT for five years, half of you aren’t, and we’re going to follow that for 10 years; it’s never going to happen. So we may never have accurate data at all, we have bad trials. But women need to know that there were trials that showed it was good, and some didn’t. And some trials showed it was bad.
Making informed decisions and understanding risk
Every woman has the right to take what she wants. It’s her body and doctors have to realise that’s okay. We are not the ones living with that risk, the fear of recurrence, which I did as a breast cancer surgeon. And I think my fear would be worse than any woman I’ve ever seen as a doctor because I’ve looked after young women who have died of metastatic breast cancer. Most of my patients will have never seen anybody go through that and they can’t imagine what it’s like. But as long as the woman knows that.
The position statement from the Royal Colleges of Obstetricians and Gynaecologists, Association of Breast Surgeons, the British Menopause Society, the Society of Endocrinologists says that HRT should not be routinely recommended for women with breast cancer, unless it’s exceptional circumstances. Because we believe it can increase the risk of recurrence. If women have tried all the other alternative drugs available. They’ve done lifestyle measures, exercise, cutting back on alcohol, and their quality of life is so bad, that they’re willing to take a risk of recurrence, then I think it’s fine if they have HRT, but we just need to make sure women have been told all of that first.
Everything is complicated. If you had a bit of DCIS, non invasive breast cancer, and you’re 65, the chance of that becoming metastatic in the future is very, very small. But a young woman who’s 35 with a large stage three ER positive breast cancer with positive lymph nodes, her risk of metastasis is much, much higher. And I’d be really concerned if women who’d had chemo were being recommended HRT because their risk of recurrence is so much higher. So I think it’s really important, your private menopause specialist, whoever you’re seeing fully understands your own risks of recurrence for your individual breast cancer.
It can be difficult because oncologists are probably going to say, no, you shouldn’t take HRT. Because we’ve looked after women where it’s come back, we are very, very risk averse. Whereas the menopause specialist may be saying, no, no, it’s fine. Trust me, you’ll be fine. And you’re left in the middle, and you don’t know who to believe. And that’s where it’s really, really hard for women. And there is no easy answer. But I think women need to know why the doctors are not recommending HRT, the cancer specialists on the whole are not recommending it.
I’m just trying to explain the evidence that women can understand. I used to tell my patients, don’t go on Google. I’ll give you a load of information. It’s bullshit, pardon my French, because it’s the first place I went. I bought 10 books written by breast cancer patients to understand what it was like and that’s me being a consultant breast surgeon.
Sources of information
The first place we go for information is often Instagram or Twitter. It’s very easy to believe what you see and it’s crazy how if someone has 100,000 followers, you’re more likely to think they’re telling the truth. You’re more likely to believe them rather than a doctor who’s got 2,000 followers who’s putting out incredible content but because they’re not famous, people don’t listen to them and it’s really hard how your expertise is based on how popular you are, not your qualifications. I don’t know the way around that. It’s really hard.
I’m not paid to do this. I do this in my free time because I just want to help people and think if I can explain research and help someone understand then that’s great. They don’t have to listen to me. It’s nice if they do but it’s a really strange world where social media is changing how patients are treated. They have access. It’s amazing as a patient you can follow conferences all over the world telling you the latest updates about your individual cancer, your illness. You have access to so much information now that was always kept behind locked doors with the doctors on this. It is opening things up.
Balancing the prevailing narratives about menopause and HRT
Most women with menopause actually cope quite well. The symptoms do get better in time, that’s the same for women taking Tamoxifen. It’s a bit like TripAdvisor. The people who are raging the most about a bad restaurant are the ones who go on and complain. I got letters of complaint, people trying to sue me. There are a handful but they really hurt.
The vast majority of people treated couldn’t be bothered to tell me anything and a couple send a card. It’s the same with the menopause. I believe most women, they know it’s not great, but they get through it, but there are some who really struggle and they are the ones making the noise and making it out to be much bigger than it is – just a thought.
The guidelines from the Royal Colleges all say that HRT should not be prescribed to prevent disease. It’s not designed for that but there’s a new narrative coming through that HRT will stop you getting dementia, heart disease, osteoporosis, diabetes, or all these kinds of things. It’s not designed for that. This is because women who are old get Alzheimers, therefore, it must be the menopause. Therefore, HRT can stop that.
That’s like saying, women with breasts get breast cancer and women who have breasts, wear bras, therefore, bras cause breast cancer. There are so many other factors. But people who follow me with breast cancer who don’t want to take HRT are terrified they are going to die of Alzheimer’s and heart disease because they’re not taking HRT.
The message from all the medical societies is you give HRT to help with menopausal symptoms, not to prevent disease. It may be a tiny bonus of taking it but you don’t prescribe it for that reason. What’s the biggest thing you can do to reduce your risk of dementia, Alzheimer’s, heart disease and osteoporosis? Exercise. Healthy lifestyle changes that are free and have no side effects.
Protecting health long-term
To improve the strength of your bones, you need calcium and vitamin D in your diet. You need weight-bearing exercise. Cycling, swimming and yoga don’t really count. You need to put force through the bones. You need to be ideally doing some weight training as well, to help build up the muscles to keep the bones strong. Estrogen delays osteoporosis. It will help a little bit if you’re on HRT but the biggest thing you can do is weight bearing exercise.
How much are you paying to see someone to give you this medication? I’m really scared at the narrative that people are now saying it’s a deficiency syndrome. It’s not. The Royal Colleges say that menopause is not a deficiency. It’s a natural state when women’s bodies stop being able to have children. We don’t call midlife crises for men a testosterone deficiency syndrome, they just get on with it.
There are still menopause specialists who are plugging the issue that it’s a deficiency. It’s natural. Your ovaries stopped working. When your body can’t cope with you being pregnant. It happens naturally like men naturally produce less testosterone. It’s called ageing. It happens to us all.
For most women, it’s simple, healthy, boring lifestyle measures that will just help you cope whilst your body gets used to it, but then settles down into your postmenopausal state. Because if you go on HRT, you’re gonna have to stop it at some point and then you’re gonna go through the symptoms. You’re going to have to go through this anyway because it’s not safe to be on it until you’re 80 or 90.
You’re delaying the inevitable. You’re going to be more able to cope with the symptoms of the menopause, if they’re bad in your 50s compared to your 70s or 80s. It’s just become this huge issue and it really shouldn’t be. People are making money. People are coming out making money off the menopause. It’s the latest thing to cash in on.
The importance of exercise when it comes to breast cancer
We now know that exercise improves all the symptoms of breast cancer treatment, physical and mental, and halves the risk of recurrence and it improves your bone health. Ideally, we should be doing aerobic and weightlifting two or three times a week and most of us don’t do it. Most doctors don’t do it. I have weeks where I fall off the wagon but it’s just that sense of, I’m looking after me, you get the endorphins ready, I feel better.
But it’s hard, and it’s easy for people to think, but look at her, she’s tall and slim. It’s easy for her. I have a busy job. I can’t do it. I get how hard it is. It’s like a dirty word, exercise. It sounds like hard work. It’s really hard to put on a pair of trainers and put a podcast in and get out the door and move. It is really hard to take the first step.
What Liz most wants women to know
I want you to question everything you’re being taught and think about the person who’s giving you information. There’s a test by a guy called Skyler Johnson called the CRAP test. Is the claim too good to be true? If it was true then every single doctor would be telling you it. Is the research unbiased? Is the research done by pharma companies who have an agenda?. Are they making money off whatever they’re selling you? Just take that into account and remember, just because someone’s a doctor, doesn’t mean they are a specialist in the area they’re talking about and trust your gut.
Listen to Dr Liz on the Magnificent Midlife Podcast
Find out more about Dr Liz O’Riordan:
Dr Liz’s website: liz.oriordan.co.uk