Fear of recurrence

Kellie Curtain [00:00:00] Let's be upfront about fear of recurrence. Yes, it's real. And no, you're not being silly. In fact, up to 70 percent of people who've had cancer worry that it's going to come back. For most that worry fades with time, but not always. And it can affect not just your quality of life, but also others around you. So who should you talk to about your fear of recurrence? A GP, surgeon, your oncologist, perhaps a psychologist? Or is a chat with a friend enough? Joining me is Professor Bruce Mann, breast surgeon and BCNA board member and health psychologist Jane Fletcher, who has a lot of experience in the mental health of those who have had cancer. Welcome to you both. So, Bruce, what actually is fear of recurrence and why is it so common?

Bruce Mann [00:00:49] Fear of recurrence is is fear that the cancer is going to come back. That's that's why we fear cancer. We all know people who have had cancer apparently cured and then it's come back. When someone is diagnosed with cancer, that's at the top of mind. I'm going to be that person. You know, I'm not going to be here for Christmas. And how common? At some level it's universal. I don't think anyone is diagnosed with cancer who doesn't worry that the cancer is going to come back.

Kellie Curtain [00:01:21] So why is it so common and is it more present in a particular age group?

Bruce Mann [00:01:28] So it being the fear of recurrence? It's an existential threat. It varies. So what that fear is depends on a lot of things. From a medical point of view, you know, we have a fear of recurrence. And, you know, in our patients. And that very much depends on the pathology. So if a woman presents with pre-cancer with DCIS and she's had treatment, we know that the risk of recurrence is is either extremely small or very small. If someone presents with a large, aggressive cancer, that's in a lot of lymph nodes we know that the risk of recurrence even after optimal treatment is higher. And so our fear that there will be a recurrence is higher. I think, and I'll be interested to see what what Jane says, but from the patient's point of view, the risk... That risk plays a role but there are many other factors. Some of them personal psychological factors, personality factors. Some of them experience with with friends or family. The woman who has has seen a close friend or relative with a cancer that recurred is very heightened to that fear of recurrence. And and the impact of our reassurance that the risk is low is is often not enough. And it's understandable why. They're things that we as as treating teams are able to identify?

Kellie Curtain [00:03:08] When is most likely to occur? That fear of recurrence.

Bruce Mann [00:03:11] There's a few times. I think one is at diagnosis. You know, this is big. This is this is... people come in and I know they have written themselves off. And their big question is, am I still going to be here at Christmas? And when I when I look shocked at the idea and say "of course you will, you know, whatever happens." Well, that's so much better than I had thought. So there is that fear at the start, I think, as when the pathology comes back and we can make an assessment of exactly how serious it is, whether this is a low and intermediate or a high risk cancer that can lead to fear of recurrence. Another time is at the end of treatment after the doctors and the nurses and all that everything has been intensively done and the person's felt really cared for for even up to a year when they're then told, well, you know, that's it. I'll see you in three months. That can lead to a fear of recurrence and that's where attention to the survivorship phase is really important.

Kellie Curtain [00:04:27] Do you think sometimes that fear of cancer returning might contribute to some women having more radical surgery than needed or recommended?

Bruce Mann [00:04:37] I think there's no doubt at all. I often have.... So when I, in most cases, if a cancer is is diagnosed at an early stage, breast conservation with with removal of the lump, a lumpectomy followed by radiation is is equivalent to mastectomy. In survival, a lot of people say if you need to take the breast off, just do it. There's a there is some feeling that bigger and more extensive treatment must be better. And it's not true. We know in selected patients and that is most, breast conserving surgery plus radiation is at least as good as mastectomy in curing the disease. So there is there isn't another fear that is that there's not so much. It's a bit bit sophisticated. It's not really fear of the cancer that has been diagnosed returning, but it's a fear of a separate unrelated cancer forming. And in younger women and women who may have a mutation in one of the genes, the breast cancer susceptibility genes, that risk can be quite high. And that is a reason that some women choose mastectomy. It's never an urgent decision. It's not not something that needs to be decided at the first or even second consultation. But it is something that is important.

Kellie Curtain [00:06:16] It's tricky, though, isn't it? And a very fine line.

Bruce Mann [00:06:20] Yes, it is. And I think sometimes and maybe even in my last statement, I've unnecessarily complicated things. What we know is that breast conservation with wide excision and mastectomy is equivalent with breast conservation and radiation is equivalent to mastectomy as a treatment.

Kellie Curtain [00:06:41] So when should someone act on that nagging fear of recurrence and seek medical advice?

Bruce Mann [00:06:49] There are a number of symptoms that can be that can be suggestive of recurrence. If those symptoms exist they should be investigated promptly. And what the symptoms are. If cancer were to come back, the bones is a common spot. If someone develops a new and persistent pain in their bones or joints that they can't explain, that should be reported and investigated. If someone develops a cough, shortness of breath or chest pain and again, unrelated, that persists, they should seek attention if they're losing weight or developing abdominal pain like unintentional loss of weight or abdominal pain. And then as far as if they find a lump in the breast or a lump on the chest wall or in the scar, they're things that may be a sign of a recurrence, they may not be. The best thing to do is to get to the someone in their treating team and have it clarified.

Kellie Curtain [00:07:47] So we're talking a day of coughing, a week of coughing.

Bruce Mann [00:07:51] I generally say two weeks, two weeks of an unexplained symptom. Everyone is at risk of getting a cold and having a cough. Everyone gets a bit of back pain now and then, except the lucky people who don't. But it goes away. So it's something that's new, out of the normal experience, unexplained or if it's very severe. Obviously, if it's very severe, attention is needed. But it's but that's the thing. And I think it's important that it is enough for a day or people will be back to see their GP or treating team every week. And that's that judgment of being alert but not alarmed, I think is a quote from someone,.

Kellie Curtain [00:08:33] Which is a big statement, given that they've gone through a very traumatic experience anyway. So their senses are quite heightened.

Bruce Mann [00:08:40] Always. Yes.

Kellie Curtain [00:08:42] So what about someone who's had a mastectomy? Is there still a chance of recurrence? And what should they look out for, given that for a woman that's had a mastectomy or even someone that's had a reconstruction there's no feeling.

Bruce Mann [00:08:56] So this is important, what I said before about breast conservation and mastectomy equivalent long term survival. Now, what that means is a mastectomy does not reduce the chance of the cancer coming back in the lungs, liver or bone. So those symptoms remain important. What it does do is it reduces the chance of a recurrence in the breast because the breast has gone. But even after mastectomy, recurrence on the chest wall or or within or in front of the reconstruction, it's possible. And so a lump, a rash in the skin, a lump in the armpit. It's often a nodule in the skin needs to be reported and checked.

Kellie Curtain [00:09:39] So with the fear of recurrence, I'm sure many would be thinking, well, why don't I just get extra testing or more scans? Yes, that might be more beneficial not only to pick up any changes, but to also alleviate that fear?

Bruce Mann [00:09:54] A great question. And this is a conversation we often have. The way we approach cancer, what has been shown is that upfront you work out what the optimal treatment is. You deliver all the treatment. Now, that may be chemo upfront, then tablets for five or 10 years. That's the treatment. After that, investigations should only be done for symptoms. And the reason for that is, is that there is no evidence that early diagnosis of a recurrence that is not causing symptoms improves treatment. So if there is a recurrence, say there is a bit of cancer in the bone, that the crystal ball would say is going to cause symptoms next year. There's no benefit in finding it now as opposed to next year. And scans cause huge anxiety, nothing worse than waiting for the scan. And scans have what are called false positives. Or "we think there might be something. Have another scan and a biopsy. Oh don't worry, false alarm." That the impact of that on fear of recurrences is huge. The impact on the pocket and the wallet is often quite big too. So generally we avoid it. There are a few times that a scan is appropriate, but. But not often.

Kellie Curtain [00:11:17] So your body really is the one that set off the alarm bells by giving you the symptoms. And that's, when you need to act?

Bruce Mann [00:11:25] Investigate symptoms, yes.

Kellie Curtain [00:11:26] The fear of recurrence doesn't always disappear with medical reassurance. Stopping those feelings of worry is sometimes a lot easier said than done. So, Jane, are those fears of recurrence the same for everyone? Do they manifest in the same way?

Jane Fletcher [00:11:42] I think the uniqueness of the human being comes into play here and everyone is potentially going to experience the fear of recurrence in a in a different way. But the signs may be the same. So someone may, their fear of recurrence maybe be being awake at two in the morning and worrying about that, but it may not actually have a big impact on them. So I think we have to look at more about the impact it actually has on the individual and whether it's actually proving to interrupt their ability to live a meaningful life.

Kellie Curtain [00:12:22] We know through our communication on BCNA's online network that two o'clock in the morning is actually a favourite time for the for the mind to go crazy with those sort of thoughts.

Jane Fletcher [00:12:34] Absolutely. Absolutely. And I guess we're not sure whether the thoughts actually disturb someone's sleep or whether they wake up because they're having a hot flash and then start to think about things. Because we also have to remember that some of those hot flashes also get people to refocus on their disease and they may be some distance out from their are experience of breast cancer, but a hot flash actually re-triggers, re-traumatizes them. And you know, I will keep coming back to the concept of the fear of recurrence is very, very much related to re-living trauma and not post-traumatic stress disorder. And I keep stressing that not everyone has post-traumatic stress disorder, but they are having post-traumatic signs. And that is the anxiety that's associated with the fear of the cancer coming back.

Kellie Curtain [00:13:29] So what is the gauge of normal fear of recurrence and when perhaps it's getting a little bit out of control?

Jane Fletcher [00:13:36] I guess if we think about symptoms of anxiety, it would be where it's very difficult for them to function. And, you know, I've had patients and Bruce and I've actually shared patients who have had their fear of recurrence has been so high that their need for medical testing has been astronomical. Where there's not a part of their body that hasn't been scanned, where they're finding constantly finding lumps, because if you poke under your armpit long enough, it is going to hurt and you're going to feel things that aren't there. So that expression of hyper vigilance, that is now a 10 out of 10 and where it actually means that they might be having problems in their social structures. So their family dynamic changes where I've had patients, where they've started to distance themselves from their young children because their fear of recurrence is so high that they don't want to trauma don't get close to their kids, because if when I die, the children won't grieve as much or my husband won't grieve as much.

Kellie Curtain [00:14:48] Do you think this is a conscious withdrawal?

Jane Fletcher [00:14:50] I don't think so. I think it's often completely subconscious. So much of what happens for us is is subconscious and is it can be expressed in a conscious way. But the motivations for fear are all about survival. This is that fight and flight response. This is an anxiety response, because for most fears or anxieties, the the thing that causes the anxiety disappears. In a cancer when do people feel safe? When do we, when do people feel that they can go back to feeling completely in control again and they don't.

Kellie Curtain [00:15:28] So you can't. You can never feel completely in control?

Jane Fletcher [00:15:32] So I think people learn to manage their fear. And for many people, they do it really well. And they feel that for most of the time, they've got things under control. And as Bruce said, there are going to be certain times that are going to have particular relevance. And I think one of the important ones is medical follow up. That I think is really an important one to talk about when people are coming in for their regular appointments. They also have to have the scan. And we know that this thing called 'scanxiety' exists, the anxiety that actually is associated with having a scan.

Kellie Curtain [00:16:07] So managing seems to be the key word. Managing your fear. Can you suggest some ways that people might be able to do that?

Jane Fletcher [00:16:17] I think one of the ways of managing fear is actually talking about the elephant in the room. So the thing that people are actually afraid of and what is the thing that is behind their fear of recurrence? It's that their cancer comes back. But underneath that is the fact that I could die and this could mean that, you know, I will leave the people who are close to me. For many people, it's that I could die a painful death because their understanding of what the process of dying is based on a process that perhaps happened 20, 30, 40 years ago, because that's when their relative died. That's what they remember from a cancer diagnosis. The other things that I think, you know, the death anxiety, we need to be very open to talk about and to get people to think about that, yes, it is an inevitability for all of us. But once you've had a cancer diagnosis, you've looked into the abyss. So it's become less of something that will happen in 20, 30, 40 years time and perhaps something that could happen at a at an earlier point in their life.

Kellie Curtain [00:17:27] It's very easy to say, oh, don't worry about it. You've just beaten cancer or just finished treatment. How seriously do you think we as a community accept someone's fear of recurrence?

Jane Fletcher [00:17:41] I think the platitudes are fundamentally unhelpful for people. So, "don't worry. Everything's going to be okay," is unhelpful because there's a little voice in your head that says, "but how do you know that? You don't know that." One of the most important things that we need to recognize is how do we live with uncertainty? How do we live with the uncertainty? Now, we all have to do that. Since someone's was diagnosed with cancer, that's that's the hard part. So the recognition of "I don't know what's actually going to happen here". The best way to live with uncertainty is to embrace it, is to is to face the uncertainty. To say "I don't actually know how it's gonna turn out. Doesn't mean it's bad. It means I don't know". And so I come back to the process of living in the moment. The concept of mindfulness and I know mindfulness is the buzzword of the moment, but, you know, it is a way of being in the world. Meditation becomes part of that, but it is being in the now and recognizing that what happens in the future is still a story because it hasn't actually been written yet and sitting with what people know to be their facts. So I talk very much from a cognitive point of view, is that trying to manage our thoughts is going to be very helpful when we're managing a fear of recurrence.

Kellie Curtain [00:19:02] Like you said, the word mindfulness really is the buzzword at the moment. Is that downloading an app? Is it seeking more information or is it going for a walk?

Jane Fletcher [00:19:17] A mindfulness activity is about a focus of attention. And that's... it doesn't matter what your focus of attention is. I think it's important to recognise that it may be a buzzword, but it actually has some quite weighty scientific evidence behind it. So we're talking about the parts of the brain that are activated in the amygdala, which is where fear... one of the processes where it comes from. It activates the prefrontal cortex. So where we process so filing, where we make sense of things and the hippocampus, so the learning and memory centre and promoting that concept of neuroplasticity, our ability to learn different ways of thinking about things. So it's very powerful if we do it. And I think most people recognise that mindfulness is important. But we get caught up in the busy-ness of our life and we get caught up in the worry of things that aren't really important. Like coming here today, you know, worrying about being late. Did it really matter if you're a few minutes late? No. So the mindfulness in everyday life is important.

Kellie Curtain [00:20:19] How helpful is a coffee with a friend? Or actually sharing your experience with someone else who's been through something similar?

Jane Fletcher [00:20:29] I think that there's a time and place for everything. And I think the social networking. So our social interactions are very important. So people who are socially isolated are much more vulnerable for any sort of mental health issues. A coffee with a friend is important. I guess what's important is it's the right friend because you don't want a friend who then goes to tell you all about their experience with someone who's died from cancer. You want someone who's going to perhaps be supportive and listen and not necessarily need to give advice, but to really listen. And that friend's going to be the one that you're going to want to catch up with. Often talk about additive and subtractive people. And we want to be around additive people, not people who exhaust us and don't actually help or make that fear worse.

Kellie Curtain [00:21:17] So if someone is ready to take that next step, they recognise that their fears are probably crossing over the line of normality. Costs are always a very big thought process, especially once you've had treatment. Things like that. What's the best way to access care?

Jane Fletcher [00:21:38] So I think there's two there's two opportunities. So there's the acute phase and that might be through the hospital that the person is being treated. The health service, the waiting times are likely to be long and they're very likely to be referred back into the community. So I think seeing a psychologist in the community or a mental health professional within the community is a good place to start. The GP is the linchpin here. Often with a bit of advice from the medical team. So Bruce and his colleagues would be able to advise who it might be, who might have the necessary skills to be able to deal with fear of recurrence as a psychologist in the community. And access through a mental health care plan so the government have a 10 session referral process so people get a mental health care plan from their GP. It will enable them to have subsidised service. Most psychologists cannot afford to bulk bill under the current rebate that's available and that's quite sad. But a state of play for most of us who work in private practice. It is important that the woman see someone who has experience in dealing with cancer and fear of recurrence. There's nothing worse than having to go in and explain to a therapist the situation from a medical perspective. I think that is doesn't necessarily build a lot of rapport.

Kellie Curtain [00:23:14] We're chatting with breast surgeon Bruce Mann and health psychologist Jane Fletcher about the fear of recurrence. So can I ask you both?

Kellie Curtain [00:23:21] Are there certain times that triggers those fears or brings them back to the surface?

Bruce Mann [00:23:28] My observation. The end of treatment is one time when when the woman may feel abandoned by the treating team. Never abandoned. But that can be a fear. I think if a symptom develops, one of the ones that I do occasionally sees is after radiation, there's often some chest wall pain that's quite common that may appear after a while. And frequently someone will come in and say I'm sure it's come back because I've got pain here. And after a quick assessment, I can strongly reassure her. I think events in either the immediate family or in the media of someone who has had cancer whose cancer has come back is a huge challenge for everyone who's gone through it.

Kellie Curtain [00:24:19] So from a medical point of view, you'd say that it's very, very important that a doctor, an oncologist, surgeon, actually indicates to a person what is normal?

Bruce Mann [00:24:34] I think that I mean, that that should help relieve this challenging anxiety. Here are the things to expect. Here are the things that are worrying, but then accept that that our job is to help. It's never wrong for someone to come in for reassurance. So if in doubt, get it, get it checked out. But also, we should inform women like these are the normal things. Don't worry. Don't worry about them so much.

Kellie Curtain [00:25:03] Often we hear people say, I don't want to bother a very busy surgeon or a a very busy oncologist.

Bruce Mann [00:25:10] We are we here to look after the individual patient and we can find time to do so.

Kellie Curtain [00:25:17] Okay, Jane, so when is it likely that a fear of recurrence will be resurface?

Jane Fletcher [00:25:24] And I think it's important to separate out that there will be times when there's a physical or medical reason for the fear. They found a lump or they've got an ache or pain. I know also that they maybe then the psychological fear, which is just the random thoughts that pop into someone's head. And often they are triggered by an exposure to something such as a full spread in Woman's Day about someone who's had breast cancer and their cancer's come back.

Kellie Curtain [00:25:54] Who do you think should be the first point of call?

Jane Fletcher [00:25:57] I think it depends. So if someone has a symptom, they need to go and see someone who can recognize that symptom. If they come to me with that symptom, I'm going to put a phone call into Bruce. I'm going to send them back to Bruce or to their oncologist or to their GP. If it is because they've got recurrent negative thoughts in the absence of physical symptoms, then they need to see a mental health professional.

Kellie Curtain [00:26:21] Bruce, can you understand some people's reservation after having that very specialized care that they don't really want to go back to a GP through fear that perhaps their expertise isn't specialized enough?

Bruce Mann [00:26:36] Yeah, that that is it's real. It happens. We have put a lot of work into our survivorship programs with shared care, which is a lot of work. Educating GPs about what it is to look for. What are the warning signs? And a lot of work is being done nationwide on that, recognizing that for most women, accessing their GP is much easier than accessing the specialist team who may be a long way away. But that also it is important that the GP has has the experience and expertise, knows what to do, and that the that the patient has confidence in the GP, that that's the case.

Kellie Curtain [00:27:22] So in an ideal world, you would have confidence in the GP. But like anything, if you're in doubt, second opinion?.

Bruce Mann [00:27:28] The GP is a critical part of the team and it's not only with GPs, it's with specialists only. If in doubt. Nothing wrong with a second opinion. Just because the specialist says, I don't think it's anything. I've got to be careful here, you know. If there is really a persistent thing and and despite care being taken, an individual remains worried. Then going back and asking again or asking someone else is sensible.

Kellie Curtain [00:28:00] And look, hopefully that fear of recurrence will remain unfounded. But that's not always the case, is it?

Bruce Mann [00:28:08] Unfortunately not. We started this podcast with that the cancer is feared, breast cancer is feared, because unfortunately, despite everything that we know and can do. Some people do die from disease and death from breast cancer that follows. You know, there's always been a recurrence before that happens. So it is it is a very serious thing, fortunately far less common than it used to be, but unfortunately, it still does occur.

Kellie Curtain [00:28:41] Jane, what about for those who are supporting someone with breast cancer? What can they look out for when it comes to fear of recurrence? Because sometimes the person who it affects most might be quite unaware.

Jane Fletcher [00:28:55] I think they're looking for big changes in behaviour, so changes in their interactions. So someone who's normally quite happy, who becomes withdrawn or someone who perhaps has there's been an exposure to something as well. So they were aware of the the impact of that exposure. So, for example, having scans, they're aware that it's very likely that the person's going to start to relive their experience when they have a scan. Now, there's a great quote about scanxiety. "People often don't realize that there's a difference between general anxiety and scanxiety. For those of us with scanxiety it's not about what might happen. It's about what did happen. Telling a person with scanxity to just let it go and don't worry, won't help. The things you worry about, will never happen can only be confusing to someone with scanxiety and potentially damaging because things that cause our anxiety, the scanxiety, already happened.  For us it's not about worrying, it's about remembering." And I think it's a lovely, lovely way of putting fear of recurrence in place because it is about remembering what happened to them and this terrible thing happened and they're fearful it's going to happen again. And that's what drives their their anxiety. And platitudes don't help. It's all gonna be okay doesn't actually help because the person who's had cancer says, "but how do you know that? You don't know that." So bringing people back to the now, right now, you don't have a recurrence. And the fear is getting in the way of you being able to live a meaningful life. And that's probably one of the most important things that we can get people to come back to as friends is as health professionals, as family. I think it's for all of us to be not necessarily reassuring people, but bringing them back to experiencing joy in what we have now.

Kellie Curtain [00:30:56] Finally, is there any way that we can prepare to minimize that fear of recurrence, either psychologically or medically?

Bruce Mann [00:31:07] I think a large amount of the you know, the doctor patient, the health professional patient relationship is about managing the fear. And, you know, I think, personal I think it's about validating the fear and not pretending recurrence couldn't occur. But being confident, that it's unlikely and certainly being providing the reassurance that if anything were to happen, there is a team there to look after her.

Jane Fletcher [00:31:38] I think, too, it's also recognizing that the fear is normal. The fear of recurrence is actually normal and a natural process. This is an abnormal experience, though. The fear of recurrences is a reaction that we would perhaps expect people to have and to let people know that it's likely to happen. And this is what it's likely to look like. And when they need to be concerned about symptoms they might have and when they might need to perhaps think that this is something that they might need to talk to someone about.

Kellie Curtain [00:32:11] Is it part of your recovery?

Jane Fletcher [00:32:14] I think perhaps it is because it's part of a process of working out how they manage and navigate this this new normal we might talk about. I also think we have to recognize that there probably is an adaptive element to the fear of recurrence because fear stops us doing strange and dangerous things. And perhaps the fear of recurrence makes people more likely to be health conscious, perhaps take their medication as directed and exercise or watch their diet, limit their alcohol consumption. So the that fear can also drive very positive behaviours.

Kellie Curtain [00:32:56] Thanks to Bruce and Jane for joining us on upfront, a proud production of Breast Cancer Network Australia. If you want to know more about the fear of recurrence, there's links to some great resources on our website bcna.org.au. The information and suggestions in this podcast series is another way BCNA offers support. Please contact your health professional with any individual concerns or questions. The opinions of our guests are welcome, but not necessarily shared by BCNA. We'd love to know your thoughts too, so leave a message on our feedback page. I'm Kellie Curtain. Thanks for being upfront with us.