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Listen in as our GP hosts, Rebecca and Sarah, are joined in this episode by Dr Liz O’Riordan – a best-selling author, speaker, podcast host and former breast cancer surgeon. Dr O’Riordan shares her tips that enable GPs to swiftly alert to the signs and symptoms of recurrence and to support patients to remain aware of their risk. They also cover features that affect the likelihood of recurrence, types of recurrence, the critical importance of coding, fear of recurrence, primary care investigations, exercise, and more. As ever, they bust common myths and share helpful practical tips.
If you loved this episode and would like to hear more like this, please leave a review, a rating and share the episode.
GPs Talk Cancer is the podcast series from GatewayC. GatewayC is the free early cancer diagnosis resource funded by the NHS and is part of The Christie NHS Foundation Trust.
Produced by Louise Harbord from GatewayC, and Jo Newsholme from Rethink Audio.
DISCLAIMER: We know this podcast might be of interest to anybody, however it is aimed at primary care health professionals. All patient cases are based on real stories from our clinical practice as GPs. They are fully anonymised with no identifiable patient data. All featured statistics are accurate at the time of recording. All views expressed by guest speakers are their own.
Liz: We need to get the message out to patients. If you have a symptom that you can’t explain that is getting worse over two or three weeks, you need to see your GP and you need to tell them – I have had breast cancer, could this be related?
Rebecca: Hello and welcome back to season two of GPs Talk Cancer. I’m Dr. Rebecca Leon and joining me again through this podcast is Dr. Sarah Taylor. We are both practicing GPs and GP leads for Gateway C. We’re both passionate about diagnosing cancer early and in this podcast, we want to share our clinical experiences with you so you can make better, faster, and more confident cancer diagnoses in primary care. 
So there’s some official stuff to make you aware of. We know this podcast might be of interest to anybody, but it’s really aimed at primary care health professionals. And although all patient cases are based on real stories from clinical practice, they are fully anonymised with no identifiable patient data.  
GatewayC is the free early cancer diagnosis resource funded by the NHS and is based at The Christie NHS Foundation Trust. GatewayC is a national programme across the whole of England, Scotland, and Wales. Register online to gain access to free interactive courses, documentary-style videos, referral maps and more. 
So today we’re going to sit down for a coffee and talk about recurrence of breast cancer, and I’m excited about introducing our guest, Dr. Liz O’Riordan. She’s a former breast surgeon. She’s had breast cancer herself three times, and she campaigns to raise awareness and support around breast cancer.
For this particular podcast, we will be talking about female patients but we do want you to be aware that anyone can be affected by breast cancer.
Rebecca: Liz, Welcome.
Liz: Thanks for having me.
Rebecca: Have you got a beverage? We always need to make sure that our guests are well looked after…
Liz: I do, I have a cup of tea.
Rebecca: Excellent. Okay, ’cause we are back in Salford Quays, Sarah, I have my oat latte.
Sarah: Excellent.
Rebecca: Just to, just to say Liz, it’s very trendy where we are. We are in Media, we’re in, we’re in Media City, so away, away from our NHS practice. So we, we have to have the oat lattes and, muffins and things!
Sarah: And where are you, Liz?
Liz: I am in Suffolk
Sarah: Right. Okay.
Liz: The middle of the countryside.
Sarah: Okay, so looking out on nice weather or not nice weather?
Liz: Lovely weather. I’ve got 40 wild ducks on my pond at the moment all trying to mate up.
Rebecca: Oh god. That’s gorgeous.
Sarah: Oh, it’s, yes.
Rebecca: Okay.
Sarah: It’s not like that at Salford Quays.
Rebecca: And how are you, Sarah?
Sarah: Good. Thank you. Yeah. Yep.
Rebecca: Good. Nice week off?
Sarah: Yes. Very nice. Thank you.
Rebecca: Good. Sarah’s just moving, well kind of, to the country-ish a bit.
Sarah: Yeah.
Rebecca: Bit of a bolt hole.
Sarah: Yeah, in the lake District. Very nice.
Rebecca: Good. So, as I say, we’ll be talking about the recurrence of breast cancer today, and just starting off with the, with some statistics. Breast cancer recurrence most commonly occurs two to three years after the primary diagnosis, and a fifth of women with breast cancer will have a recurrence. Okay, so we’re gonna start with the first case – over to you, Sarah.
Sarah: Okay. So this, this is the patient that we, um, talked about in our module on breast cancer recurrence that’s on the GatewayC website, and it’s a woman who was in her early sixties who’d just moved, just retired, and moved to be closer to her daughter. So had gone to a new GP practice. She had some pain, which, in her hip, which she was thinking, well, actually I’ve been doing a lot of lifting. We’ve been decorating, we’ve been moving boxes, all of these sorts of things and went to see her new GP. Now, as we both know, you know, significant diagnoses in general practice can get a bit lost on, on notes. And sometimes you haven’t got the… even the electronic notes very quickly after somebody comes. So it didn’t occur to the patient ’cause she’d had breast cancer 10 years ago. Didn’t occur to the GP that this was anything apart from a bit of musculoskeletal hip pain. But it carried on over the course of the next six to eight weeks and the patient became more concerned. She had an X-ray that was normal. She had some blood tests that were normal, but it still carried on. And after a bit, the GP had looked at the notes and thought, actually, this is a little bit unusual, and noticed the, the past diagnosis of breast cancer and referred her back into, well, not back because it’s a new area, but referred her in to the breast cancer services and she was diagnosed with a recurrence, a bone recurrence. So just wanted to really ask you, Liz, whether that’s sort of something that you think is fairly common, what we, what we could learn in primary care that might alert us a bit more quickly and what we can do to support patients to recognise these things maybe a bit sooner as well.
Liz: It’s a really good case study and it is common. So breast cancer tends to come back, as you said, in the first couple of years, or 5, 10, 20, 30 years later. And a lot of women think they’re cured, especially at their five-year follow up. They don’t realise it can come back. And I think if a patient comes to you and says, I’ve been doing a lot of gardening and lifting and I’ve got some hip pain, you’re never gonna think it’s breast cancer. And we are not very good as breast surgeons, I think at making sure people know what bone pain is like, what the symptoms are, and I’ve had hip pain myself. I had a normal CT, but I didn’t realise that bony metastatic pain is often felt deep in the groin, not on the outside of the hip. And I tell women now that bone pain that could be metastatic is a pain that you feel deep in your bones, that often gets worse at night, that isn’t helped by painkillers, that you can’t explain. And I think we need to get the message out to patients. If you have a symptom that you can’t explain that is getting worse over two or three weeks, you need to see your GP and you need to tell them – I have had breast cancer, could this be related? The first thing you say, make sure they know. Most of the time it isn’t, but the quicker you can get sent up to the clinic to have a CT scan, the better we can find out you’re normal, because as you know, X-rays can be normal. There are no blood tests to identify breast cancer recurrence. It’s happened to friends of mine who’ve had shortness of breath and said oh you’re a runner, you’re asthmatic and then three months later they end up in A&E. And I think it’s scary for women to think it might come back. You don’t want to be the person to frighten them, but I think it has to be on everybody’s radar.
Rebecca: Can you tell us a bit… a few of the other symptoms of distance recurrence? I mean, we, we… distant recurrence, I mean we talked about bone and there’s obviously lung, liver, brain… just what we can expect.
Liz: Yeah. So first of all, they’re very vague symptoms, like feeling tired all the time, or feeling sick or losing weight that you can’t really explain really. It can come back to the liver and that can give you pain in the upper part of your tummy on the right-hand side, that can give you abdominal swelling and bloating. Your skin can become itchy and yellow. You can lose weight and lose your appetite. If it comes back in the lungs, it can be a chronic, dry cough. You’re not bringing up sputum. That can give you shortness of breath on rest or minimal exercise. They’re the common places it goes to. HER2-positive breast cancer tends to go to the brain, and that can be hard to diagnose because you might just not be yourself. You might have confusion or memory problems, personality changes. It can also give you dizziness and blurred vision. You may find you’re falling over more often, and you may not notice you have those symptoms, it may be someone else. But they’re the four common sites for most breast cancers. But as you know, there’s a cancer called lobular that can be sneaky.
Sarah: And so when you’re talking about things like the pain, or shortness of breath or cough, all of these things are quite common symptoms in primary care, aren’t they? So I suppose from my point of view, if I saw a woman with a cough and saw her once, I might think, oh, she’s got an infection. But I suppose is it like we’re talking about with lots of things, it’s persistent and progression of symptoms that we should be concerned about?
Liz: I would say ask the patient to put note in their diary, when did this pain first start? And if it’s still there in three or four weeks and it’s not got better with simple conservative treatment, like if it’s a chest infection, antibiotics, strong painkillers for a bone pain, and if it’s still there and hasn’t got better, then refer them in…
Sarah: That seems like a really…
Liz: … a lot of them will be normal. But I think it’s saying, right, I’m seeing you now. If in two or three weeks this hasn’t got better, then I’m gonna send you in to the breast clinic. And I would do it like that.
Sarah: That’s a really nice, straightforward rule as well. Isn’t it?
Rebecca: We like straightforward!
Sarah: We do, yeah, because actually these…
Liz: Then the patient, the patient, knows someone’s ’cause you are, you are at home worrying, thinking, oh my goodness, oh my goodness. If you know someone else is looking after you, it kind of takes a bit of the pressure off and you may worry a bit less. And actually it, it isn’t anything to worry about. It does go away. That kind of helps you get some mental grounding as well.
Rebecca: I mean, we use diaries a lot in primary care, don’t we? If you think about it, blood pressure diaries, food diaries, weight, you know, we are using them a lot because actually it’s really helpful, because it’s this progressive and persistent symptom is the one that we… not the ones that are getting better. You mentioned about lobular being sneaky. Tell us about lobular tumours please.
Liz: So I had mixed ductal lobular. And lobular is sneaky because it doesn’t have a chemical called E-cadherin. That means it grows in single file like sheets, not clumps. What it can do is wrap itself around the linings of organs in your abdomen and the peritoneum. So lobular cancer can wrap around the stomach and mimic stomach cancer. So feeling very full after a few bites, getting a lot of bad indigestion, weight loss. It can wrap itself around the lining of the small and large bowel mimicking symptoms of bowel obstruction. It can also go to the ovaries, the uterus and the bladder so giving you problems with peeing, with unusual vaginal bleeding. It can very rarely go to the eye as well and cause problems with vision. So anyone with lobular cancer, with a gastrointestinal gynecological upset, it’s gotta be on the back of your mind and it’s really hard to pick up on from CT scans as well. So that’s just something to have in the back of your mind. Lobular… Weird symptom… Could be a recurrence.
Sarah: And how… because I don’t think that we, or at my practice, automatically code whether a patient has a lobular breast cancer, but you, from what you are saying, that’s something that we should start doing?
Liz: I think so. There’s not a lot of data. Most trials didn’t separate women into ductal and lobular, but the lobular women will know that they’ve had lobular cancer and it may be worth asking the patient, do they know what type they had? So you could, that could maybe help you distinguish what symptoms they are. I s really, really hard to pick up as well, but I think that is something that’s worth keeping an eye on.
Sarah: And does the type of cancer affect the risk of recurrence?
Liz: No, it’s not the type of cancer per se. It’s how big it is, has it spread to your lymph nodes and what the receptors are. Basically women who’ve had chemotherapy, or who’ve had drugs like CDK inhibitors with a high risk of recurrence are more likely to get a recurrence. So if you had a lot of lymph nodes, it was a big tumour because it was bigger when it was diagnosed, it’s more likely that cells were spread that are lying dormant. But I’ve seen women with a very small, one centimetre, ER positive, node negative cancer who’ve had mets in a couple of years because there’s still things we don’t biologically know.
Rebecca: I mean, you mentioned that we, we don’t really put the type of breast cancer on the notes. We, I mean the histopathological report is also hidden deep, deep. That’s the other thing we should probably look at, discuss, if someone comes. I doubt the patient would probably know the ins and outs. What do you think?
Liz: So most patients will know whether it was triple negative, HER2 positive or ER positive because they’ll be having treatment for that. They’ll know if their nodes are positive or not. Most of us know how big it was or the type, because we get all that information, we want to know. So I would ask us, and we can probably tell you what you need to know.
Sarah: I was thinking that. I was thinking actually, I think I would, you know, it, it’s a difficult thing, I think it would be difficult to expect a lot of GPs to interpret some of those results and the patients probably are on the whole better at it.
Rebecca: I think, I think with breast cancer patients maybe more, if you ask somebody with bowel cancer, I doubt they would know their TNM stage.
Liz: No, and it’s, it’s kind of irrelevant to the treatment. You either they had chemo or they didn’t. You’ve got a good idea whether they’re Dukes A, B, or C. But with breast, because all the treatment you have depends on your size and the nodes and the receptors, you know what you’ve had because that’s the treatment you’re on.
Rebecca: From a, a question I wanted to ask you, Liz. We are seeing kind of younger premenopausal women having new diagnoses of breast cancer. So this isn’t recurrence necessarily, it’s more just, just out of interest. Why is that happening?
Liz: We don’t know. I’ll be completely honest, but we are seeing more women under 40 developing breast cancer. It’s more common in African American women, and we are seeing more cases of triple negative breast cancer, and we don’t know why. I think we may find it’s due to our lifestyle. We are generally unhealthier and eating worse and drinking more and exercising less, but that can’t be all of it. But it’s still very rare. When you’re 40, your risk of getting breast cancer is about one in 64. When you’re 30, your risk is about one in 200. By the time you reach your eighties, it’s like one in three, one in four women. And I think it’s worrying because women aren’t checking their breasts regularly. I never checked mine. It wasn’t gonna happen to me. And women aren’t going for their screening. We know that only a third of women are going for their first mammogram screen in some parts of the country.
Rebecca: Gosh, I mean that we’ve talked about screening. We did a podcast a few weeks ago on screening and about how, I think it’s our job as well in, in primary care when it pops up to say this person hasn’t presented for bowel screening, breast screening, cervical screening, for us to actually say – why? And, and I had a patient yesterday who I could see a lady in her sixties and she just said work wouldn’t let her get out of work for her. So it got cancelled and she’d never been. And so, you know, I actually went the extra mile to print off the NHS and where, where she’s gonna phone and, and all of this. And, and I think it’s just almost going that extra mile. How important it is.
Sarah: There’s a, a great initiative in Greater Manchester, which is looking at, which is called ‘Bee Seen – Get Screened’, which is getting big organisations to sign up to allowing their, you know, to promoting screening and just making it clear that people can have time off to go and have their screening. And we’re not… when you think about it in numbers wise, it’s not very much.
Rebecca: No.
Sarah: And I think it, you know, so we’ve got some quite big organisations, some of the hospital trusts and other people signed up to do it, which is the right way for things to be, I think.
Rebecca: Liz, can you tell us a little bit about the patients who relapsed from breast cancer? And you touched on it earlier, I mean, the triple negative breast cancers versus the oestrogen receptor positive diseases and, and when you may expect a recurrence.
Liz: So we see most recurrences in the first two to three years or 10, 20, 30 years later, and the triple negatives tend to recur early in the first couple of years. The HER2 positives tend to. Whereas oestrogen positive cancer are tend to be 5, 10, 20, 30 years later because they are generally more slow growing.
Rebecca: And is that why the endocrine therapy has now changed to 10 years from five?
Liz: Yeah, so we know if you have a greater risk of recurrence, meaning you have a large cancer, positive lymph nodes then your risk of recurrence is higher. So we tend to give you tamoxifen or anastrozole for 10 years, but that does mean another five years of side effects. We know a lot of women don’t like taking the drugs. Me included! And it does increase the risk of things like endometrial cancer or osteoporosis. So it is weighing in that side effect. We don’t do it for triple negative because there isn’t any adjuvant treatment we can give because they have no receptors, the only treatment we have for them is chemotherapy.
Rebecca: Okay.
Sarah: And we talked, we, we were just talking before we started about fear of recurrence.
Liz: Yeah,
Sarah: Presumably that’s a big problem…?
Liz: I had no idea how bad it was. But it took me five years to not wake up every day thinking, is this the day my cancer comes back? You are flooded with young women dying every day on Instagram and social media. It’s everywhere. And it’s so easy to think, is this a cough or is this a cough? And there’s no point in making plans ’cause I won’t be here any year. It is crippling. And I had quite, I mean, I’ve had breast cancer three times. My risk of making the 10 years was only 40%, and you can worry about that, but it made me realise in time it happens to me or it doesn’t. Even if you’ve got a really good chance of making it, you might not be in that group. And it’s kind of being able to, with time, to step back and think – it’s out of my control, take the drugs, I do all the lifestyle changes and if it happens, it happens. But that fear, when you get a hip pain or a headache, you imagine the worst. And I think if GPs can sense a woman is worried and it could be breast cancer, just send them into a clinic so someone can stop that awful bell ringing in my head. Stop me going sick with worry. Because the mental anxiety is a huge impact on your life.
Sarah: So you’re saying that that actually the response, because the GP is often the first or primary care professionals, the first person, that actually our response to something like that is really, really important.
Liz: I think if a woman is worried, even if you think it’s nothing, that fear is horrific. And often I just want a CT for my brain to stop me worrying. And it may be just refer someone in, so a breast clinic can actually see them, advise them, and maybe help with things like CBT, just to help you work through that fear and learn to live and be on a much healthier place moving forward.
Sarah: And I suppose, you know what we, we, we talk about this a lot on the podcast, but actually the NICE guidance was drawn up with an initial referral risk of a minimum of 3%, wasn’t it, on each symptom. I suppose it, there’s no specific guidance I don’t think that I’m aware of on risk of recurrence. But actually if you just use the same rule of thumb, actually, if you’re referring with somebody who’s got a five or 10% risk of recurrence from a symptom, that’s still quite a low risk, but still a real risk for the patient.
Liz: Yeah, and if you think most women we see in breast clinics don’t have breast cancer. 95% of people are well. But we see them to rule them out. And I think the NHS predict score can give you your chance of being alive in 10 years, but we know it can come back even if your chance of being alive in 10 years is 99% because breast cancer’s sneaky and we still don’t understand how it works. And I think if you have a worried woman who is actually becoming ill because she’s scared her cancer’s come back, just send her into the unit and they’ll be able to sort her out and reassure her and tell her what to do.
Sarah: And practically speaking, if the patient is no longer under follow-up, what’s the best way of getting them back in?
Liz: Oh… I don’t know!
Sarah: I was hoping you’d have a magical answer!
Liz: It was… So we used to see people every year for five years and then we stopped because we know it’s more likely to come back in the first five years. But patients don’t get mets at the time of their appointment in January, they can come back in July or December. And so now it’s open access, meaning when you have a symptom, we want you to come back and see us. But for me, I have to see the GP, which means leaving a message, and I know the words to say – I think my breast cancer’s come back. A lot of patients don’t know that. And my GP then has to see me and then send me back in. In London, it may be open access, you can ring the breast care nurse. It’s really hard, and that’s why I think patients need to go back to their breast care nurses before they’re diag… before they’ve said goodbye and say, ‘right, who do I call if it’s coming back, if I’m worried?’ and you need to ask your local breast unit. If I have a patient with mets, what do you want me to do? Do they come back into the two week wait? Do you have a special clinic? Do they go to the oncologist? Because you can spend months going around in circles trying to get back into the system.
Sarah: I suppose the advantage of doing it, sending on a suspected cancer referral two week wait, is that it is all tracked and because the hospitals have targets on it, you’ll get through quite quickly. I’ll probably be shot for saying that!
Liz: Exactly, and cancers can grow really, really quickly when they come back. And if you are taking three months to have tests and things done, you don’t know what’s gonna happen to that patient in the meantime.
Sarah: Yeah.
Rebecca: Okay, so can I go onto case two?
Sarah: Yes, you have a few minutes ’cause we’ve spent such a long time on case one!
Rebecca: I know. Well case, I think case one’s the more meatier one, but case two…
Sarah: Can I just, just go back to one thing that we just, I just want to just absolutely clarify on case one. We were just saying, weren’t we, I think that plain film X-rays, so chest, bone x-rays and blood tests are not going to give us an answer.
Liz: Not always.
Rebecca: They may.
Liz: They may. So there’s no blood test that can track breast cancer recurrence. Oncologists will measure tumour markers, but they could be 30 in one woman and 500 another, and both mean the same. There is no blood test at the moment, although liquid biopsies are coming. Chest X-rays and bone, and bone X-rays may pick up mets, but they might not. And the time it takes for you to arrange a non-urgent X-ray to then get the results back to then get the patient back to you, it could be growing somewhere else. And I’d say if you think it could be mets, send them back in so they can have a CT or a proper bone scan.
Sarah: And presumably liver function tests, a normal liver function test…
Liz: Yeah, so you, you could do basic liver function tests, FBC just to see what they’re like. But there’s no blood test that can say this is or isn’t a recurrence.
Sarah: So if somebody has liver mets, their liver function tests could still be normal.
Liz: Yeah, because they’re early stages. It’s got to be quite a lot of the liver that’s damaged before you start seeing derangement.
Rebecca: I suppose the same with hypercalcemia as well.
Sarah: Yeah.
Liz: Yeah, exactly.
Rebecca: Before we go onto case two, I just wanted to ask you, Liz, just about local recurrence, ’cause it is slightly different. Can you just talk about symptoms of local recurrence please?
Liz: Yeah, sure. And I’m guilty as a surgeon of never actually telling my patients what to look out for until I had it myself. And I put a post up and suddenly women are saying, why didn’t I know this? And actually I saw this and I’ve been diagnosed. So local recurrence is where your breast cancer comes back in the same breast. If you’ve had a lumpectomy, it can come back in the same breast. So you may feel a new lump or a new tumour. If you’ve had a mastectomy, you may notice it as a little spot or ulcer in the skin around or near the scar that’s kind of not getting better. You can also get it in nodules around the edge of the breast. So if you had a mastectomy, there’s still breast tissue underneath the skin. We can’t remove every single breast cell. Even women who’ve had both breasts removed for BRCA can get a breast cancer right at the edges of where the breast… up by the collarbone or underneath where the underwired area would sit. So it’s still important that every month you check your breasts, you check the skin, you look in the mirror and get any new changes seen.
Rebecca: Okay. Is that more difficult if you’ve then had reconstruction? I’m just thinking…
Liz: No. So you, you still look at the skin over the breast. It is almost unheard of to get a recurrence right at the back underneath an implant because we take everything down to the pectoral muscle, but there will still be breast cells left underneath the skin. So if you’ve had a mastectomy, you just check the skin over your chest or the implant or the reconstruction.
Rebecca: Okay. That’s really helpful. Okay. Thank you. Okay, case two. This is somebody from my practice. Came to see me. She was 84 years old and had been diagnosed with breast cancer in 2014. New patient, but had told me fairly early on, that she’d had a left-sided mastectomy and lymph node removal on the left side. She was under the lymphoedema clinic at our local hospice. And she was just a bit concerned because an area in her axilla had become a bit more full and she was just wanted to just get that checked out and was sure it was just chronic inflammation because of the, the lymphoedema. Unfortunately, when I examined her, it didn’t… I was concerned, it felt quite hard. It felt different from the rest of her arm. And I got in touch with her breast team and she was diagnosed with a recurrence. From that, Liz, is there anything… I mean, you know, lymphoedema, lymphadenopathy is difficult…
Liz: It’s really difficult. I guess the first thing coming across my mind is did she have all her lymph nodes removed or just a couple? But even when we do a full clearance, we don’t remove all the lymph nodes. There are still lymph nodes up above your pec minor by the collarbone that we don’t go near otherwise we’ll cause brachial plexopathy. So there are still our lymph nodes there. It can spread to. Lymphoedema is really hard and we don’t know why it happens to women. It’s still about 10% or so, but it tends to be distal, you tend to get lymphoedema in the fingers and the hand that then tracks up the arm. It doesn’t start in the armpit and go down. And I think any new swelling in the armpit could always be breast cancer coming back. But again, it’s very easy. Women don’t think their cancer can come back there. They assume it’s the lymphoedema. The person seeing them thinks, well, that makes sense. I’m not an expert. So thank you so much for examining her properly. But it can come back in the lymph nodes, in the armpit and above the collarbone. And it’s always worth checking and getting anything sent in for an ultra scan, just to make sure.
Rebecca: That was, that was really helpful about the distal ’cause I never, I didn’t know that.
Liz: So we, we always tell women to notice it the first time. If you notice that your ring’s tight or a watch or the cuff of a jumper is suddenly a bit tighter in one hand than the other. So it often starts distally and then comes up.
Rebecca: Women who’ve had lymph node removal from one side, they always say they can’t have blood tests and blood pressures on that side. Can you tell me, is that wrong or right?
Liz: It’s based on old wives’ tales. What we used to do was do a whole load of damage in the armpit and take all the lymph nodes away and it’s wrong. Although, even me as a breast cancer patient, is like ‘no, you can’t use this arm’. It is safe to have blood taken, to have blood pressure taken, from the arm. You should be lifting weights. You should be using your arm, and the best way to stop lymphoedema is to shake your arms in the air vigorously because it wakes up all the lymph channels. We should be moving it and using it and lifting it. It’s completely fine unless you have lymphoedema where you protect that arm at all costs. But if you don’t, use it.
Rebecca: Okay.
Sarah: There you go. I love a bit of myth busting!
Rebecca: Myth busting! So interesting fact, over to you, Liz.
Liz: Did you know that regular aerobic and resistance exercise can reduce the risk of recurrence by 30%?
Rebecca: Crazy!
Liz: And it’s free and there are no side effects. And we can give chemo if there’s only a 5% benefit.
Rebecca: It is always the, it is also the best antidepressant as well – exercise.
Liz: Yep. And it works for all the physical and mental side effects of breast cancer treatment. And it can get you out of hospital quicker. And it’s great for fatigue. It should be the first drug we prescribe when anybody is diagnosed.
Sarah: And it can get you always shaking your arms around, like you were just saying, for lymphoedema!
Liz: Yeah, exactly. It’s, for me… Yeah, vigorous shaking! And actually if you have a patient with breast lymphoedema after radiotherapy, shaking their boob violently can actually help wake up the lymph channels in the breast as well, like a massage. But when I was… I carried on exercising all the way through chemo and treatment. I was just Liz. I was no longer a breast cancer patient. It was my sense of mindfulness just being out in the fresh air, moving my body, lifting heavy weights. It’s like, yeah, cancer can’t take everything from me.
Sarah: And what’s your preferred form of exercise?
Liz: So we should be doing three aerobic sessions a day for half an hour, and that means getting hot…
Sarah: A day or a week?
Liz: … and sweaty and uncomfortable… A week!
Rebecca: You said a day!
Liz: So three… Sorry. No, that’s crazy! Sorry.
Rebecca: I was thinking, I’ve got to work!
Liz: We should be doing. Three times a week, we should be doing half an hour of aerobic exercise where you get a bit hot and sweaty and uncomfortable. Ideally, weight bearing for bone strength, so running, but cycling, jogging, swimming, whatever. Whatever you enjoy. On top of that, you need to be doing two resistance-based sessions a week for half an hour, and that’s really, really important to strengthen your bones, reduce osteoporosis, stop muscle loss, and you don’t need to be in a gym. You can do push ups against the kitchen counter when the rice is boiling. You can do squats when you’re waiting for your tea to brew. You can do lunges when you’re brushing your teeth. You can make it exercise snacks throughout the day, but it’s really, really important and both of those together can reduce your risk of recurrence by a third. It’s incredible.
Sarah: It’s amazing, isn’t it?
Rebecca: That’s amazing.
Liz: And that’s where GPs, when you see patients, can encourage them. Is there a local park run near you, the 5K your way? What are you doing to get active? Do you know about the local community leisure centres programs they can get involved in?
Sarah: So this should be a massive part of the Cancer Care Review, shouldn’t it?
Liz: Yeah, it’s, it’s slowly coming. Not everyone is aware of the evidence, but it’s out there now. So if you can make that part of your cancer care review – how are you moving? Why aren’t you moving? What can I do to help?
Sarah: Is it the same in other… Oh, this is probably an unfair question, but do you know how, whether it’s the same in other cancers?
Liz: So most of the evidence has looked at breast, prostate, and lung, and it does have an impact on their, their risk of recurrence. The chances are it will help everybody, but we don’t have enough women with, or men with melanoma or brain cancer to prove it, but there are no bad side effects of exercise. Plus most women with, more women with breast cancer die of heart disease than women who don’t have breast cancer. And we know that exercising can reduce the risk of diabetes and heart disease and strokes as well.
Sarah: And I was told that as well by somebody about endometrial cancer, that actually because of the risk factors for endometrial cancer, more women with endometrial cancer will die of cardiovascular effects. So actually it’s really important for them too.
Rebecca: Very interesting. And I just wanna talk about the Cancer Care Review, ’cause you touched on it. ’cause we talk about prehab quite a bit when we’re, when we’re doing our, initial cancer care review about nutrition, about psychological, physical… Do you think it’s a good time, Liz, for us to educate our patients about possible recurrence and what they should look out for?
Liz: Yeah. It’s hard for surgeons and oncologists to know when to tell people. When you see them after the surgery, you generally want to be good, it’s great, you know, go away, see you in a year. And if you do it in a year, it’s often too late because it can come back early. And I think it’s really important for you to say, has your doctor talked to you about the fact that it can come back? To find out what they know and if they haven’t, you could say, well it’s important that you know it can. You can show them like Jo Taylor’s infographic. These are signs you need to look out for. If you have anything that’s unusual that’s gone on for more than two weeks, come back and see me. And I think if you guys can be proactive, at least you’ll know all your patients know what to look out for. Don’t assume that anybody else is doing it. We get leaflets, but we don’t read them. And this is a chance for you to broach that subject.
Sarah: And it makes it more approachable and easier for people to get… gives them permission to come back, doesn’t it?
Liz: Because you feel like an idiot. I don’t wanna bother the GP with a cough or hip pain ’cause I’m sure it’s nothing. I don’t want to bother you. I’m, and it’s, it just makes… yeah, as you said, easier to come back.
Rebecca: So Sarah, question to you. How, after listening to Liz, are you going to change your practice? Put you on the spot there!
Sarah: You have! I think it’s probably being a bit more proactive in the cancer care review and then just… Maybe address, if I’m seeing people just being more careful with safety netting and getting them to come back, if they’ve got symptoms that could be a recurrence. So maybe, you’re saying if they’ve got a cough, maybe saying, well, it’s probably possibly due to an upper respiratory tract infection, but if it is, I would expect that to settle in a couple of weeks. If it hasn’t, I need to see you again. Probably just being a little bit more proactive in that.
Rebecca: Okay, great. I think it’s also really important with recurrence and with diagnosis of breast cancer to spend some time with all women about them knowing their breasts, about doing a monthly self-breast examination and almost teach them how to do it. And we’ve talked about almost doing videos. That sounds really weird. Not doing those kind of videos, but like as in to send out to our patients saying almost this is how you do a breast examination.
Sarah: There must be lots of those available.
Rebecca: And…
Liz: Well, I, I’ve got one on my YouTube channel where I use car sponges and lollipop so they know what they’re feeling and what position to do because no one teaches us do they? Mum doesn’t teach us. We don’t get taught at school.
Rebecca: Can you put, can you send that to us, Liz? And we can put that…
Liz: Yeah, sure!
Rebecca: … onto our show reel ’cause that sounds fab. So I think it’s just important and we’ve talked about doing these videos for, ’cause we’re not gonna touch on it today, but there are more hard to reach groups, and actually for, for us to engage with them, whether it’s screening, whether to present to GPs, I think it’s important. Okay, so that’s what I’m going to practice. Yeah. Sorry, Liz.
Liz: I say, I know there’s a Muslim community where they are looking at showing women how to examine their breasts by kneading dough.
Rebecca: Okay.
Liz: So that the feel of kneading the dough is a bit like feeling your breasts, and then you could put something hard underneath the dough as a way of teaching them without being suggestive or sexual that’s approved in their community.
Sarah: There you go.
Rebecca: I love that. Okay, well, I think we’ve covered a lot and we’ve got through it. Liz, thank you so much.
Liz: Thank you.
Rebecca: Just to finish off the key clinical points. We’ll do one each.
Sarah: Okay.
Rebecca: Okay. Remember the critical importance of coding, particularly when patients are moving GP practice.
Sarah: Yeah, it’s important that patients are aware of their risk of recurrence and that’s probably a role for breast nurses, GPs, and for breast surgeons.
Rebecca: Fear of recurrence is a significant problem. It’s a rational response to the situation but with some patients it overtakes them with intrusive anxiety and concerns. They take it really seriously.
Sarah: And I think the other thing is that the investigations that are available to us in primary care don’t necessarily give you an answer. And if there’s a, a concern about a risk of recurrence, we should just refer patients back to secondary care.
Rebecca: And the final thing is exercise, exercise, exercise!
Sarah: Absolutely.
Rebecca: So Liz, thank you very much. And luckily we have got Liz again for one of our next podcasts. So you’ll be hearing from her again. But thank you for listening to this podcast from GatewayC. We hope you’re enjoying this series. Please do support this podcast by leaving us a review or rating wherever you get your podcasts. And if you’ve got any topic suggestions for future episodes, we’d love to hear them. Please do include these in your review. If you’ve found this or other episodes interesting and helpful to your practise, please do share it with a friend or colleague. It really does help to spread the word. We’ve got a free Breast Cancer Recurrence course available on the GatewayC website. All reference studies and guidelines are in our show notes. Thank you again for listening and thank you to our producers, Jo Newsholme from Rethink Audio and Louise Harbord from GatewayC. See you again soon.
Liz: We need to get the message out to patients. If you have a symptom that you can’t explain that is getting worse over two or three weeks, you need to see your GP and you need to tell them – I have had breast cancer, could this be related?
Rebecca: Hello and welcome back to season two of GPs Talk Cancer. I’m Dr. Rebecca Leon and joining me again through this podcast is Dr. Sarah Taylor. We are both practicing GPs and GP leads for Gateway C. We’re both passionate about diagnosing cancer early and in this podcast, we want to share our clinical experiences with you so you can make better, faster, and more confident cancer diagnoses in primary care. 
So there’s some official stuff to make you aware of. We know this podcast might be of interest to anybody, but it’s really aimed at primary care health professionals. And although all patient cases are based on real stories from clinical practice, they are fully anonymised with no identifiable patient data.  
GatewayC is the free early cancer diagnosis resource funded by the NHS and is based at The Christie NHS Foundation Trust. GatewayC is a national programme across the whole of England, Scotland, and Wales. Register online to gain access to free interactive courses, documentary-style videos, referral maps and more. 
So today we’re going to sit down for a coffee and talk about recurrence of breast cancer, and I’m excited about introducing our guest, Dr. Liz O’Riordan. She’s a former breast surgeon. She’s had breast cancer herself three times, and she campaigns to raise awareness and support around breast cancer.
For this particular podcast, we will be talking about female patients but we do want you to be aware that anyone can be affected by breast cancer.
Rebecca: Liz, Welcome.
Liz: Thanks for having me.
Rebecca: Have you got a beverage? We always need to make sure that our guests are well looked after…
Liz: I do, I have a cup of tea.
Rebecca: Excellent. Okay, ’cause we are back in Salford Quays, Sarah, I have my oat latte.
Sarah: Excellent.
Rebecca: Just to, just to say Liz, it’s very trendy where we are. We are in Media, we’re in, we’re in Media City, so away, away from our NHS practice. So we, we have to have the oat lattes and, muffins and things!
Sarah: And where are you, Liz?
Liz: I am in Suffolk
Sarah: Right. Okay.
Liz: The middle of the countryside.
Sarah: Okay, so looking out on nice weather or not nice weather?
Liz: Lovely weather. I’ve got 40 wild ducks on my pond at the moment all trying to mate up.
Rebecca: Oh god. That’s gorgeous.
Sarah: Oh, it’s, yes.
Rebecca: Okay.
Sarah: It’s not like that at Salford Quays.
Rebecca: And how are you, Sarah?
Sarah: Good. Thank you. Yeah. Yep.
Rebecca: Good. Nice week off?
Sarah: Yes. Very nice. Thank you.
Rebecca: Good. Sarah’s just moving, well kind of, to the country-ish a bit.
Sarah: Yeah.
Rebecca: Bit of a bolt hole.
Sarah: Yeah, in the lake District. Very nice.
Rebecca: Good. So, as I say, we’ll be talking about the recurrence of breast cancer today, and just starting off with the, with some statistics. Breast cancer recurrence most commonly occurs two to three years after the primary diagnosis, and a fifth of women with breast cancer will have a recurrence. Okay, so we’re gonna start with the first case – over to you, Sarah.
Sarah: Okay. So this, this is the patient that we, um, talked about in our module on breast cancer recurrence that’s on the GatewayC website, and it’s a woman who was in her early sixties who’d just moved, just retired, and moved to be closer to her daughter. So had gone to a new GP practice. She had some pain, which, in her hip, which she was thinking, well, actually I’ve been doing a lot of lifting. We’ve been decorating, we’ve been moving boxes, all of these sorts of things and went to see her new GP. Now, as we both know, you know, significant diagnoses in general practice can get a bit lost on, on notes. And sometimes you haven’t got the… even the electronic notes very quickly after somebody comes. So it didn’t occur to the patient ’cause she’d had breast cancer 10 years ago. Didn’t occur to the GP that this was anything apart from a bit of musculoskeletal hip pain. But it carried on over the course of the next six to eight weeks and the patient became more concerned. She had an X-ray that was normal. She had some blood tests that were normal, but it still carried on. And after a bit, the GP had looked at the notes and thought, actually, this is a little bit unusual, and noticed the, the past diagnosis of breast cancer and referred her back into, well, not back because it’s a new area, but referred her in to the breast cancer services and she was diagnosed with a recurrence, a bone recurrence. So just wanted to really ask you, Liz, whether that’s sort of something that you think is fairly common, what we, what we could learn in primary care that might alert us a bit more quickly and what we can do to support patients to recognise these things maybe a bit sooner as well.
Liz: It’s a really good case study and it is common. So breast cancer tends to come back, as you said, in the first couple of years, or 5, 10, 20, 30 years later. And a lot of women think they’re cured, especially at their five-year follow up. They don’t realise it can come back. And I think if a patient comes to you and says, I’ve been doing a lot of gardening and lifting and I’ve got some hip pain, you’re never gonna think it’s breast cancer. And we are not very good as breast surgeons, I think at making sure people know what bone pain is like, what the symptoms are, and I’ve had hip pain myself. I had a normal CT, but I didn’t realise that bony metastatic pain is often felt deep in the groin, not on the outside of the hip. And I tell women now that bone pain that could be metastatic is a pain that you feel deep in your bones, that often gets worse at night, that isn’t helped by painkillers, that you can’t explain. And I think we need to get the message out to patients. If you have a symptom that you can’t explain that is getting worse over two or three weeks, you need to see your GP and you need to tell them – I have had breast cancer, could this be related? The first thing you say, make sure they know. Most of the time it isn’t, but the quicker you can get sent up to the clinic to have a CT scan, the better we can find out you’re normal, because as you know, X-rays can be normal. There are no blood tests to identify breast cancer recurrence. It’s happened to friends of mine who’ve had shortness of breath and said oh you’re a runner, you’re asthmatic and then three months later they end up in A&E. And I think it’s scary for women to think it might come back. You don’t want to be the person to frighten them, but I think it has to be on everybody’s radar.
Rebecca: Can you tell us a bit… a few of the other symptoms of distance recurrence? I mean, we, we… distant recurrence, I mean we talked about bone and there’s obviously lung, liver, brain… just what we can expect.
Liz: Yeah. So first of all, they’re very vague symptoms, like feeling tired all the time, or feeling sick or losing weight that you can’t really explain really. It can come back to the liver and that can give you pain in the upper part of your tummy on the right-hand side, that can give you abdominal swelling and bloating. Your skin can become itchy and yellow. You can lose weight and lose your appetite. If it comes back in the lungs, it can be a chronic, dry cough. You’re not bringing up sputum. That can give you shortness of breath on rest or minimal exercise. They’re the common places it goes to. HER2-positive breast cancer tends to go to the brain, and that can be hard to diagnose because you might just not be yourself. You might have confusion or memory problems, personality changes. It can also give you dizziness and blurred vision. You may find you’re falling over more often, and you may not notice you have those symptoms, it may be someone else. But they’re the four common sites for most breast cancers. But as you know, there’s a cancer called lobular that can be sneaky.
Sarah: And so when you’re talking about things like the pain, or shortness of breath or cough, all of these things are quite common symptoms in primary care, aren’t they? So I suppose from my point of view, if I saw a woman with a cough and saw her once, I might think, oh, she’s got an infection. But I suppose is it like we’re talking about with lots of things, it’s persistent and progression of symptoms that we should be concerned about?
Liz: I would say ask the patient to put note in their diary, when did this pain first start? And if it’s still there in three or four weeks and it’s not got better with simple conservative treatment, like if it’s a chest infection, antibiotics, strong painkillers for a bone pain, and if it’s still there and hasn’t got better, then refer them in…
Sarah: That seems like a really…
Liz: … a lot of them will be normal. But I think it’s saying, right, I’m seeing you now. If in two or three weeks this hasn’t got better, then I’m gonna send you in to the breast clinic. And I would do it like that.
Sarah: That’s a really nice, straightforward rule as well. Isn’t it?
Rebecca: We like straightforward!
Sarah: We do, yeah, because actually these…
Liz: Then the patient, the patient, knows someone’s ’cause you are, you are at home worrying, thinking, oh my goodness, oh my goodness. If you know someone else is looking after you, it kind of takes a bit of the pressure off and you may worry a bit less. And actually it, it isn’t anything to worry about. It does go away. That kind of helps you get some mental grounding as well.
Rebecca: I mean, we use diaries a lot in primary care, don’t we? If you think about it, blood pressure diaries, food diaries, weight, you know, we are using them a lot because actually it’s really helpful, because it’s this progressive and persistent symptom is the one that we… not the ones that are getting better. You mentioned about lobular being sneaky. Tell us about lobular tumours please.
Liz: So I had mixed ductal lobular. And lobular is sneaky because it doesn’t have a chemical called E-cadherin. That means it grows in single file like sheets, not clumps. What it can do is wrap itself around the linings of organs in your abdomen and the peritoneum. So lobular cancer can wrap around the stomach and mimic stomach cancer. So feeling very full after a few bites, getting a lot of bad indigestion, weight loss. It can wrap itself around the lining of the small and large bowel mimicking symptoms of bowel obstruction. It can also go to the ovaries, the uterus and the bladder so giving you problems with peeing, with unusual vaginal bleeding. It can very rarely go to the eye as well and cause problems with vision. So anyone with lobular cancer, with a gastrointestinal gynecological upset, it’s gotta be on the back of your mind and it’s really hard to pick up on from CT scans as well. So that’s just something to have in the back of your mind. Lobular… Weird symptom… Could be a recurrence.
Sarah: And how… because I don’t think that we, or at my practice, automatically code whether a patient has a lobular breast cancer, but you, from what you are saying, that’s something that we should start doing?
Liz: I think so. There’s not a lot of data. Most trials didn’t separate women into ductal and lobular, but the lobular women will know that they’ve had lobular cancer and it may be worth asking the patient, do they know what type they had? So you could, that could maybe help you distinguish what symptoms they are. I s really, really hard to pick up as well, but I think that is something that’s worth keeping an eye on.
Sarah: And does the type of cancer affect the risk of recurrence?
Liz: No, it’s not the type of cancer per se. It’s how big it is, has it spread to your lymph nodes and what the receptors are. Basically women who’ve had chemotherapy, or who’ve had drugs like CDK inhibitors with a high risk of recurrence are more likely to get a recurrence. So if you had a lot of lymph nodes, it was a big tumour because it was bigger when it was diagnosed, it’s more likely that cells were spread that are lying dormant. But I’ve seen women with a very small, one centimetre, ER positive, node negative cancer who’ve had mets in a couple of years because there’s still things we don’t biologically know.
Rebecca: I mean, you mentioned that we, we don’t really put the type of breast cancer on the notes. We, I mean the histopathological report is also hidden deep, deep. That’s the other thing we should probably look at, discuss, if someone comes. I doubt the patient would probably know the ins and outs. What do you think?
Liz: So most patients will know whether it was triple negative, HER2 positive or ER positive because they’ll be having treatment for that. They’ll know if their nodes are positive or not. Most of us know how big it was or the type, because we get all that information, we want to know. So I would ask us, and we can probably tell you what you need to know.
Sarah: I was thinking that. I was thinking actually, I think I would, you know, it, it’s a difficult thing, I think it would be difficult to expect a lot of GPs to interpret some of those results and the patients probably are on the whole better at it.
Rebecca: I think, I think with breast cancer patients maybe more, if you ask somebody with bowel cancer, I doubt they would know their TNM stage.
Liz: No, and it’s, it’s kind of irrelevant to the treatment. You either they had chemo or they didn’t. You’ve got a good idea whether they’re Dukes A, B, or C. But with breast, because all the treatment you have depends on your size and the nodes and the receptors, you know what you’ve had because that’s the treatment you’re on.
Rebecca: From a, a question I wanted to ask you, Liz. We are seeing kind of younger premenopausal women having new diagnoses of breast cancer. So this isn’t recurrence necessarily, it’s more just, just out of interest. Why is that happening?
Liz: We don’t know. I’ll be completely honest, but we are seeing more women under 40 developing breast cancer. It’s more common in African American women, and we are seeing more cases of triple negative breast cancer, and we don’t know why. I think we may find it’s due to our lifestyle. We are generally unhealthier and eating worse and drinking more and exercising less, but that can’t be all of it. But it’s still very rare. When you’re 40, your risk of getting breast cancer is about one in 64. When you’re 30, your risk is about one in 200. By the time you reach your eighties, it’s like one in three, one in four women. And I think it’s worrying because women aren’t checking their breasts regularly. I never checked mine. It wasn’t gonna happen to me. And women aren’t going for their screening. We know that only a third of women are going for their first mammogram screen in some parts of the country.
Rebecca: Gosh, I mean that we’ve talked about screening. We did a podcast a few weeks ago on screening and about how, I think it’s our job as well in, in primary care when it pops up to say this person hasn’t presented for bowel screening, breast screening, cervical screening, for us to actually say – why? And, and I had a patient yesterday who I could see a lady in her sixties and she just said work wouldn’t let her get out of work for her. So it got cancelled and she’d never been. And so, you know, I actually went the extra mile to print off the NHS and where, where she’s gonna phone and, and all of this. And, and I think it’s just almost going that extra mile. How important it is.
Sarah: There’s a, a great initiative in Greater Manchester, which is looking at, which is called ‘Bee Seen – Get Screened’, which is getting big organisations to sign up to allowing their, you know, to promoting screening and just making it clear that people can have time off to go and have their screening. And we’re not… when you think about it in numbers wise, it’s not very much.
Rebecca: No.
Sarah: And I think it, you know, so we’ve got some quite big organisations, some of the hospital trusts and other people signed up to do it, which is the right way for things to be, I think.
Rebecca: Liz, can you tell us a little bit about the patients who relapsed from breast cancer? And you touched on it earlier, I mean, the triple negative breast cancers versus the oestrogen receptor positive diseases and, and when you may expect a recurrence.
Liz: So we see most recurrences in the first two to three years or 10, 20, 30 years later, and the triple negatives tend to recur early in the first couple of years. The HER2 positives tend to. Whereas oestrogen positive cancer are tend to be 5, 10, 20, 30 years later because they are generally more slow growing.
Rebecca: And is that why the endocrine therapy has now changed to 10 years from five?
Liz: Yeah, so we know if you have a greater risk of recurrence, meaning you have a large cancer, positive lymph nodes then your risk of recurrence is higher. So we tend to give you tamoxifen or anastrozole for 10 years, but that does mean another five years of side effects. We know a lot of women don’t like taking the drugs. Me included! And it does increase the risk of things like endometrial cancer or osteoporosis. So it is weighing in that side effect. We don’t do it for triple negative because there isn’t any adjuvant treatment we can give because they have no receptors, the only treatment we have for them is chemotherapy.
Rebecca: Okay.
Sarah: And we talked, we, we were just talking before we started about fear of recurrence.
Liz: Yeah,
Sarah: Presumably that’s a big problem…?
Liz: I had no idea how bad it was. But it took me five years to not wake up every day thinking, is this the day my cancer comes back? You are flooded with young women dying every day on Instagram and social media. It’s everywhere. And it’s so easy to think, is this a cough or is this a cough? And there’s no point in making plans ’cause I won’t be here any year. It is crippling. And I had quite, I mean, I’ve had breast cancer three times. My risk of making the 10 years was only 40%, and you can worry about that, but it made me realise in time it happens to me or it doesn’t. Even if you’ve got a really good chance of making it, you might not be in that group. And it’s kind of being able to, with time, to step back and think – it’s out of my control, take the drugs, I do all the lifestyle changes and if it happens, it happens. But that fear, when you get a hip pain or a headache, you imagine the worst. And I think if GPs can sense a woman is worried and it could be breast cancer, just send them into a clinic so someone can stop that awful bell ringing in my head. Stop me going sick with worry. Because the mental anxiety is a huge impact on your life.
Sarah: So you’re saying that that actually the response, because the GP is often the first or primary care professionals, the first person, that actually our response to something like that is really, really important.
Liz: I think if a woman is worried, even if you think it’s nothing, that fear is horrific. And often I just want a CT for my brain to stop me worrying. And it may be just refer someone in, so a breast clinic can actually see them, advise them, and maybe help with things like CBT, just to help you work through that fear and learn to live and be on a much healthier place moving forward.
Sarah: And I suppose, you know what we, we, we talk about this a lot on the podcast, but actually the NICE guidance was drawn up with an initial referral risk of a minimum of 3%, wasn’t it, on each symptom. I suppose it, there’s no specific guidance I don’t think that I’m aware of on risk of recurrence. But actually if you just use the same rule of thumb, actually, if you’re referring with somebody who’s got a five or 10% risk of recurrence from a symptom, that’s still quite a low risk, but still a real risk for the patient.
Liz: Yeah, and if you think most women we see in breast clinics don’t have breast cancer. 95% of people are well. But we see them to rule them out. And I think the NHS predict score can give you your chance of being alive in 10 years, but we know it can come back even if your chance of being alive in 10 years is 99% because breast cancer’s sneaky and we still don’t understand how it works. And I think if you have a worried woman who is actually becoming ill because she’s scared her cancer’s come back, just send her into the unit and they’ll be able to sort her out and reassure her and tell her what to do.
Sarah: And practically speaking, if the patient is no longer under follow-up, what’s the best way of getting them back in?
Liz: Oh… I don’t know!
Sarah: I was hoping you’d have a magical answer!
Liz: It was… So we used to see people every year for five years and then we stopped because we know it’s more likely to come back in the first five years. But patients don’t get mets at the time of their appointment in January, they can come back in July or December. And so now it’s open access, meaning when you have a symptom, we want you to come back and see us. But for me, I have to see the GP, which means leaving a message, and I know the words to say – I think my breast cancer’s come back. A lot of patients don’t know that. And my GP then has to see me and then send me back in. In London, it may be open access, you can ring the breast care nurse. It’s really hard, and that’s why I think patients need to go back to their breast care nurses before they’re diag… before they’ve said goodbye and say, ‘right, who do I call if it’s coming back, if I’m worried?’ and you need to ask your local breast unit. If I have a patient with mets, what do you want me to do? Do they come back into the two week wait? Do you have a special clinic? Do they go to the oncologist? Because you can spend months going around in circles trying to get back into the system.
Sarah: I suppose the advantage of doing it, sending on a suspected cancer referral two week wait, is that it is all tracked and because the hospitals have targets on it, you’ll get through quite quickly. I’ll probably be shot for saying that!
Liz: Exactly, and cancers can grow really, really quickly when they come back. And if you are taking three months to have tests and things done, you don’t know what’s gonna happen to that patient in the meantime.
Sarah: Yeah.
Rebecca: Okay, so can I go onto case two?
Sarah: Yes, you have a few minutes ’cause we’ve spent such a long time on case one!
Rebecca: I know. Well case, I think case one’s the more meatier one, but case two…
Sarah: Can I just, just go back to one thing that we just, I just want to just absolutely clarify on case one. We were just saying, weren’t we, I think that plain film X-rays, so chest, bone x-rays and blood tests are not going to give us an answer.
Liz: Not always.
Rebecca: They may.
Liz: They may. So there’s no blood test that can track breast cancer recurrence. Oncologists will measure tumour markers, but they could be 30 in one woman and 500 another, and both mean the same. There is no blood test at the moment, although liquid biopsies are coming. Chest X-rays and bone, and bone X-rays may pick up mets, but they might not. And the time it takes for you to arrange a non-urgent X-ray to then get the results back to then get the patient back to you, it could be growing somewhere else. And I’d say if you think it could be mets, send them back in so they can have a CT or a proper bone scan.
Sarah: And presumably liver function tests, a normal liver function test…
Liz: Yeah, so you, you could do basic liver function tests, FBC just to see what they’re like. But there’s no blood test that can say this is or isn’t a recurrence.
Sarah: So if somebody has liver mets, their liver function tests could still be normal.
Liz: Yeah, because they’re early stages. It’s got to be quite a lot of the liver that’s damaged before you start seeing derangement.
Rebecca: I suppose the same with hypercalcemia as well.
Sarah: Yeah.
Liz: Yeah, exactly.
Rebecca: Before we go onto case two, I just wanted to ask you, Liz, just about local recurrence, ’cause it is slightly different. Can you just talk about symptoms of local recurrence please?
Liz: Yeah, sure. And I’m guilty as a surgeon of never actually telling my patients what to look out for until I had it myself. And I put a post up and suddenly women are saying, why didn’t I know this? And actually I saw this and I’ve been diagnosed. So local recurrence is where your breast cancer comes back in the same breast. If you’ve had a lumpectomy, it can come back in the same breast. So you may feel a new lump or a new tumour. If you’ve had a mastectomy, you may notice it as a little spot or ulcer in the skin around or near the scar that’s kind of not getting better. You can also get it in nodules around the edge of the breast. So if you had a mastectomy, there’s still breast tissue underneath the skin. We can’t remove every single breast cell. Even women who’ve had both breasts removed for BRCA can get a breast cancer right at the edges of where the breast… up by the collarbone or underneath where the underwired area would sit. So it’s still important that every month you check your breasts, you check the skin, you look in the mirror and get any new changes seen.
Rebecca: Okay. Is that more difficult if you’ve then had reconstruction? I’m just thinking…
Liz: No. So you, you still look at the skin over the breast. It is almost unheard of to get a recurrence right at the back underneath an implant because we take everything down to the pectoral muscle, but there will still be breast cells left underneath the skin. So if you’ve had a mastectomy, you just check the skin over your chest or the implant or the reconstruction.
Rebecca: Okay. That’s really helpful. Okay. Thank you. Okay, case two. This is somebody from my practice. Came to see me. She was 84 years old and had been diagnosed with breast cancer in 2014. New patient, but had told me fairly early on, that she’d had a left-sided mastectomy and lymph node removal on the left side. She was under the lymphoedema clinic at our local hospice. And she was just a bit concerned because an area in her axilla had become a bit more full and she was just wanted to just get that checked out and was sure it was just chronic inflammation because of the, the lymphoedema. Unfortunately, when I examined her, it didn’t… I was concerned, it felt quite hard. It felt different from the rest of her arm. And I got in touch with her breast team and she was diagnosed with a recurrence. From that, Liz, is there anything… I mean, you know, lymphoedema, lymphadenopathy is difficult…
Liz: It’s really difficult. I guess the first thing coming across my mind is did she have all her lymph nodes removed or just a couple? But even when we do a full clearance, we don’t remove all the lymph nodes. There are still lymph nodes up above your pec minor by the collarbone that we don’t go near otherwise we’ll cause brachial plexopathy. So there are still our lymph nodes there. It can spread to. Lymphoedema is really hard and we don’t know why it happens to women. It’s still about 10% or so, but it tends to be distal, you tend to get lymphoedema in the fingers and the hand that then tracks up the arm. It doesn’t start in the armpit and go down. And I think any new swelling in the armpit could always be breast cancer coming back. But again, it’s very easy. Women don’t think their cancer can come back there. They assume it’s the lymphoedema. The person seeing them thinks, well, that makes sense. I’m not an expert. So thank you so much for examining her properly. But it can come back in the lymph nodes, in the armpit and above the collarbone. And it’s always worth checking and getting anything sent in for an ultra scan, just to make sure.
Rebecca: That was, that was really helpful about the distal ’cause I never, I didn’t know that.
Liz: So we, we always tell women to notice it the first time. If you notice that your ring’s tight or a watch or the cuff of a jumper is suddenly a bit tighter in one hand than the other. So it often starts distally and then comes up.
Rebecca: Women who’ve had lymph node removal from one side, they always say they can’t have blood tests and blood pressures on that side. Can you tell me, is that wrong or right?
Liz: It’s based on old wives’ tales. What we used to do was do a whole load of damage in the armpit and take all the lymph nodes away and it’s wrong. Although, even me as a breast cancer patient, is like ‘no, you can’t use this arm’. It is safe to have blood taken, to have blood pressure taken, from the arm. You should be lifting weights. You should be using your arm, and the best way to stop lymphoedema is to shake your arms in the air vigorously because it wakes up all the lymph channels. We should be moving it and using it and lifting it. It’s completely fine unless you have lymphoedema where you protect that arm at all costs. But if you don’t, use it.
Rebecca: Okay.
Sarah: There you go. I love a bit of myth busting!
Rebecca: Myth busting! So interesting fact, over to you, Liz.
Liz: Did you know that regular aerobic and resistance exercise can reduce the risk of recurrence by 30%?
Rebecca: Crazy!
Liz: And it’s free and there are no side effects. And we can give chemo if there’s only a 5% benefit.
Rebecca: It is always the, it is also the best antidepressant as well – exercise.
Liz: Yep. And it works for all the physical and mental side effects of breast cancer treatment. And it can get you out of hospital quicker. And it’s great for fatigue. It should be the first drug we prescribe when anybody is diagnosed.
Sarah: And it can get you always shaking your arms around, like you were just saying, for lymphoedema!
Liz: Yeah, exactly. It’s, for me… Yeah, vigorous shaking! And actually if you have a patient with breast lymphoedema after radiotherapy, shaking their boob violently can actually help wake up the lymph channels in the breast as well, like a massage. But when I was… I carried on exercising all the way through chemo and treatment. I was just Liz. I was no longer a breast cancer patient. It was my sense of mindfulness just being out in the fresh air, moving my body, lifting heavy weights. It’s like, yeah, cancer can’t take everything from me.
Sarah: And what’s your preferred form of exercise?
Liz: So we should be doing three aerobic sessions a day for half an hour, and that means getting hot…
Sarah: A day or a week?
Liz: … and sweaty and uncomfortable… A week!
Rebecca: You said a day!
Liz: So three… Sorry. No, that’s crazy! Sorry.
Rebecca: I was thinking, I’ve got to work!
Liz: We should be doing. Three times a week, we should be doing half an hour of aerobic exercise where you get a bit hot and sweaty and uncomfortable. Ideally, weight bearing for bone strength, so running, but cycling, jogging, swimming, whatever. Whatever you enjoy. On top of that, you need to be doing two resistance-based sessions a week for half an hour, and that’s really, really important to strengthen your bones, reduce osteoporosis, stop muscle loss, and you don’t need to be in a gym. You can do push ups against the kitchen counter when the rice is boiling. You can do squats when you’re waiting for your tea to brew. You can do lunges when you’re brushing your teeth. You can make it exercise snacks throughout the day, but it’s really, really important and both of those together can reduce your risk of recurrence by a third. It’s incredible.
Sarah: It’s amazing, isn’t it?
Rebecca: That’s amazing.
Liz: And that’s where GPs, when you see patients, can encourage them. Is there a local park run near you, the 5K your way? What are you doing to get active? Do you know about the local community leisure centres programs they can get involved in?
Sarah: So this should be a massive part of the Cancer Care Review, shouldn’t it?
Liz: Yeah, it’s, it’s slowly coming. Not everyone is aware of the evidence, but it’s out there now. So if you can make that part of your cancer care review – how are you moving? Why aren’t you moving? What can I do to help?
Sarah: Is it the same in other… Oh, this is probably an unfair question, but do you know how, whether it’s the same in other cancers?
Liz: So most of the evidence has looked at breast, prostate, and lung, and it does have an impact on their, their risk of recurrence. The chances are it will help everybody, but we don’t have enough women with, or men with melanoma or brain cancer to prove it, but there are no bad side effects of exercise. Plus most women with, more women with breast cancer die of heart disease than women who don’t have breast cancer. And we know that exercising can reduce the risk of diabetes and heart disease and strokes as well.
Sarah: And I was told that as well by somebody about endometrial cancer, that actually because of the risk factors for endometrial cancer, more women with endometrial cancer will die of cardiovascular effects. So actually it’s really important for them too.
Rebecca: Very interesting. And I just wanna talk about the Cancer Care Review, ’cause you touched on it. ’cause we talk about prehab quite a bit when we’re, when we’re doing our, initial cancer care review about nutrition, about psychological, physical… Do you think it’s a good time, Liz, for us to educate our patients about possible recurrence and what they should look out for?
Liz: Yeah. It’s hard for surgeons and oncologists to know when to tell people. When you see them after the surgery, you generally want to be good, it’s great, you know, go away, see you in a year. And if you do it in a year, it’s often too late because it can come back early. And I think it’s really important for you to say, has your doctor talked to you about the fact that it can come back? To find out what they know and if they haven’t, you could say, well it’s important that you know it can. You can show them like Jo Taylor’s infographic. These are signs you need to look out for. If you have anything that’s unusual that’s gone on for more than two weeks, come back and see me. And I think if you guys can be proactive, at least you’ll know all your patients know what to look out for. Don’t assume that anybody else is doing it. We get leaflets, but we don’t read them. And this is a chance for you to broach that subject.
Sarah: And it makes it more approachable and easier for people to get… gives them permission to come back, doesn’t it?
Liz: Because you feel like an idiot. I don’t wanna bother the GP with a cough or hip pain ’cause I’m sure it’s nothing. I don’t want to bother you. I’m, and it’s, it just makes… yeah, as you said, easier to come back.
Rebecca: So Sarah, question to you. How, after listening to Liz, are you going to change your practice? Put you on the spot there!
Sarah: You have! I think it’s probably being a bit more proactive in the cancer care review and then just… Maybe address, if I’m seeing people just being more careful with safety netting and getting them to come back, if they’ve got symptoms that could be a recurrence. So maybe, you’re saying if they’ve got a cough, maybe saying, well, it’s probably possibly due to an upper respiratory tract infection, but if it is, I would expect that to settle in a couple of weeks. If it hasn’t, I need to see you again. Probably just being a little bit more proactive in that.
Rebecca: Okay, great. I think it’s also really important with recurrence and with diagnosis of breast cancer to spend some time with all women about them knowing their breasts, about doing a monthly self-breast examination and almost teach them how to do it. And we’ve talked about almost doing videos. That sounds really weird. Not doing those kind of videos, but like as in to send out to our patients saying almost this is how you do a breast examination.
Sarah: There must be lots of those available.
Rebecca: And…
Liz: Well, I, I’ve got one on my YouTube channel where I use car sponges and lollipop so they know what they’re feeling and what position to do because no one teaches us do they? Mum doesn’t teach us. We don’t get taught at school.
Rebecca: Can you put, can you send that to us, Liz? And we can put that…
Liz: Yeah, sure!
Rebecca: … onto our show reel ’cause that sounds fab. So I think it’s just important and we’ve talked about doing these videos for, ’cause we’re not gonna touch on it today, but there are more hard to reach groups, and actually for, for us to engage with them, whether it’s screening, whether to present to GPs, I think it’s important. Okay, so that’s what I’m going to practice. Yeah. Sorry, Liz.
Liz: I say, I know there’s a Muslim community where they are looking at showing women how to examine their breasts by kneading dough.
Rebecca: Okay.
Liz: So that the feel of kneading the dough is a bit like feeling your breasts, and then you could put something hard underneath the dough as a way of teaching them without being suggestive or sexual that’s approved in their community.
Sarah: There you go.
Rebecca: I love that. Okay, well, I think we’ve covered a lot and we’ve got through it. Liz, thank you so much.
Liz: Thank you.
Rebecca: Just to finish off the key clinical points. We’ll do one each.
Sarah: Okay.
Rebecca: Okay. Remember the critical importance of coding, particularly when patients are moving GP practice.
Sarah: Yeah, it’s important that patients are aware of their risk of recurrence and that’s probably a role for breast nurses, GPs, and for breast surgeons.
Rebecca: Fear of recurrence is a significant problem. It’s a rational response to the situation but with some patients it overtakes them with intrusive anxiety and concerns. They take it really seriously.
Sarah: And I think the other thing is that the investigations that are available to us in primary care don’t necessarily give you an answer. And if there’s a, a concern about a risk of recurrence, we should just refer patients back to secondary care.
Rebecca: And the final thing is exercise, exercise, exercise!
Sarah: Absolutely.
Rebecca: So Liz, thank you very much. And luckily we have got Liz again for one of our next podcasts. So you’ll be hearing from her again. But thank you for listening to this podcast from GatewayC. We hope you’re enjoying this series. Please do support this podcast by leaving us a review or rating wherever you get your podcasts. And if you’ve got any topic suggestions for future episodes, we’d love to hear them. Please do include these in your review. If you’ve found this or other episodes interesting and helpful to your practise, please do share it with a friend or colleague. It really does help to spread the word. We’ve got a free Breast Cancer Recurrence course available on the GatewayC website. All reference studies and guidelines are in our show notes. Thank you again for listening and thank you to our producers, Jo Newsholme from Rethink Audio and Louise Harbord from GatewayC. See you again soon.