Ongoing and late side effects

Kellie Curtain: Let's be upfront about the side effects of breast cancer treatment. Most people during and for a few weeks after treatment will experience side effects. But for some the side effects are ongoing or can become permanent. These are called long term or ongoing effects. Others can develop what's known as "late effects" - those that might surface months even years after treatment which can cause anxiety for some people. Side effects can range from being a minor inconvenience to severely impacting your quality of life. In this episode of Upfront we're going to talk about some of the side effects of chemotherapy radiotherapy surgery and hormone therapy. What to watch for and what you can do to avoid or minimize them. Joining us is Dr. Belinda Yeo, a medical oncologist and clinician scientist who through work at the Olivia Newton-John Cancer Research Institute is investigating ways to reduce the toxins for people undergoing treatment. Also with us is Pauline Prebble: who six months after completing active treatment for stage three invasive breast cancer suffered some serious and lasting side effects. Welcome to you both. So Belinda if we start with you, can you explain what ongoing and late effects of breast cancer treatment are and how are they different the side effects experienced while having treatment?

Belinda Yeo: So I guess the key thing we tend to think about with ongoing or late effects is these are things that either continue to occur despite the fact that our treatment may well have stopped. So chemotherapy may be finished but a side effect that may have developed during chemotherapy persists and sometimes even gets worse even after treatment stops. Or you may have late effects that actually don't occur at all. And as you mentioned in your introduction happen months or even many years after treatment and they're not always immediately directly linked to the previous treatment but we certainly know that these can happen and they need to be watched out for.

Kellie Curtain: It's, I guess, a normal assumption to think that if you haven't got side effects either during or straight after your treatment that it would feel a bit odd for them to come, what six months later?

Belinda Yeo: Yeah absolutely. Absolutely. I mean I think we emphasize a lot about the treatment-on-treatment effects and I think we concentrate a lot when counselling patients before we start treatment. But I believe we do underestimate and don't we don't prioritize the late effects and I think part of that is sometimes because the conversation there's enough to talk about. Hopefully we do mention them but I think we often put them to the side and think this is something that will hopefully think about later.

Kellie Curtain: Pauline, share with us your experience. You'd actually been six months post.

Pauline Prebble: Yes. So I'd finished active treatment in early June and it was December of that year that just something that I thought was quite you know nothing to be worried about. I passed out at home lying on the bed. I mentioned it to my GP and she did some tests and found out I had cardiomyopathy.

Kellie Curtain: So what is. Explain that to us in layman's terms. What's that mean?
Pauline Prebble: So heart muscle dysfunction is basically what it is. So it comes in lots of different shapes and forms in different severities. For me it just means that the chemo has impacted the way my heart pumps blood through my body basically.

Kellie Curtain: Belinda, is that common?

Belinda Yeo: It's not common but it is a well-known potential toxicity particularly of the anthracycline chemotherapies which are a very standard chemotherapy that we do give in breast cancer. In fact we're trying very hard to see whether we can forego giving anthracycline there's a lot of work trying to work out if we can do just as well without giving anthracycline and some of our regimes are doing that. But yes it is a it is a toxicity that we know about and we do warn patients about.

Kellie Curtain: So just on let's go to chemotherapy. Quite often we hear about chemo brain. What actually is that?

Belinda Yeo: That's a great question. I mean perhaps Pauline might give you a better answer than I do. I mean there's a lot in the literature about chemo brain. But I think patients will describe it slightly differently and I think it is a very personal experience and I think it's something that can happen during treatment and certainly can happen even after treatment has stopped. And the way patients describe it to me is you know they feel fuzzy, they're certainly not as sharp, they feel their concentration is affected, their memory may be affected and they just don't feel you know as they did before we started treatment. And I think it's complicated because there may be multiple reasons why these things are being experienced.

Kellie Curtain: And so with something like chemo brain is that likely to be an ongoing or can it be a late effect as well?

Belinda Yeo: I think there is debate about whether it's ongoing. Certainly we certainly counsel patients that we expect that these changes will hopefully improve. But I do certainly have experience of patients where for even months or years after treatment they feel as though this this cloudiness or this you know loss of their concentration is never really fully recovered. And it's you know it's got the name chemo brain. But I suspect there's actually you know other things involved there. We know that hormone therapy can affect the way our minds work depleting women of oestrogen at young ages can certainly affect our cognition and I think there are multiple other factors.

Kellie Curtain: So yes Pauline did you experience chemo brain?

Pauline Prebble: I certainly did. I have become the queen of lists. I have a notepad at my bedside table because it'll be like 2:00 in the morning I wake up and think oh I've got to get the meat out of the freezer so I have to write it down because otherwise it'll get to teatime the following night and I'll go oh what was I meant to do? That's right, forgot to get the meat out of the freezer. Really simple things.

Kellie Curtain: Do you honestly do you think that was the difference though? Chemo brain?  Or could that just be an age thing. Not that you're old!

Pauline Prebble: Thank you. My children will be happy about that. No I definitely did notice a difference. I was the sort of person that didn't need to diarise everything because I could pick it up bang bang bang. I got to the point where even at work I would have to write at least of everything I needed to get done in a day because I'd forget something and often it was something important or you'd go to the supermarket for two things you'd come home with ten. None of them neither. No you know the two things you needed were not there. Or getting halfway through a sentence and trying to pick up what the next word is and thinking "what is it you call it?" You know and you're fumbling with I wasn't like that before. But out of all the side effects I suppose it's the one that's easiest to get around by you know writing it and having visual cues for things all the time.

Kellie Curtain: And Belinda from a medical point of view. Is that something like what Pauline was doing, making lists, is that the way around it is it likely to improve? Do you come out of that phase like if you've got that effect for some does it return?

Belinda Yeo: Yeah I mean I think there's a lot of data out there to show that if you have a major illness impacting on you whether that's from the illness itself or from the treatment that you have these things can occur. And you know what we say hopefully this is reversible I think the studies on follow up after you know, in inverted commas "chemo brain" are really not very well controlled because there's so many factors and it's very hard to measure these things but strategies like you know keeping lists and trying to navigate around the world that you were used to functioning like before you develop this I think is you know is very sensible but you would hope that this is something that would improve.

Kellie Curtain: And is there a way that you can minimize something like chemo brain?

Belinda Yeo: Look I think certainly all of our toxicities of chemotherapy and I guess we're talking predominantly about chemotherapy here we know that patients who are able to keep fit during treatment they're able to eat well they're able to try and maintain you know as normal a life as possible. And that's a really you know difficult word to use I guess in what is often an extremely difficult time. But I think in the old days we you know said to patients listen you're going to have a lot of treatment it's going to be really toxic. Let's just get through it and we'll pick up the pieces at the end. We don't do that at all now. In fact we really try and maintain you know physical fitness, a good diet. We don't want patients to put on weight and all of these things. Absolutely no doubt helped patients deal with the side effects. And I think do prevent some of the side effects that you would otherwise see baseline health problems beforehand and age. These things are important when you're making decisions about what appropriate treatment is with the patient with you.

Kellie Curtain: So one of the other real very common effects of chemotherapy is fatigue and what are some other things? Neuropathy?

Belinda Yeo: Yeah so neuropathy you're affecting the nerves in the fingers and toes. And that maybe that's a tingling is it could be a tingling of pins and needles. It could even develop into actually the loss of feeling in the fingers and affecting your function like doing up buttons. These are things that we see with multiple of our again chemotherapy agents. Chemotherapy is getting a bad rap here but the taxanes would be the most common. So drugs like Paclitaxel and this is a really challenging toxicity as well because it develops in some patients they don't get it at all in other patients they develop it quite early on in treatment. And this is also a side effect as we discussed where you can stop the treatment today and it continued to get worse even after you stop. And unfortunately it doesn't always resolve completely. So again I go back to the old days. But you know we didn't realize I think that the longevity of this particular side effects and we would push patients to treatment we are now very sensitive to this side effect. We take it extremely seriously. Patients in my experience get sick of people asking them the nursing staff you know the medical staff if run around them you know how your fingers and toes. But it's because we often have to either dose reduce or even sometimes stop the treatment early because of this. Because there are many patients who have been cured from breast cancer who come in with still long persisting pins and needles and fingers and toes it really does affect the quality of life for the rest of their life.

Kellie Curtain: Yes. So I think it's worth noting at this point that a doctor now probably even more so we'll consider those side effects even though they then decide to still proceed with the chemotherapy. So it's part of a whole approach, isn't it?

Belinda Yeo: Absolutely. That's right. And so when you're deciding about whether a treatment has a significant benefit or we feel it has a significant benefit we always need to weigh up the benefit versus the side effects. And for example if a patient already has this particular condition perhaps from diabetes or you know other medical problems then you know you would seriously need to consider whether the benefit of giving this drug did outweigh the potential to make that worse. And that really comes very much down to that that first discussion with the patient.

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Kellie Curtain: Pauline you've got a long-lasting side effect now with your heart. How are you. What does that mean for you now?

Pauline Prebble: It it's impacted my life on a daily basis. I don't have the energy levels that I had anymore. In recent months I've had to stop working while they're trying to figure out a way to stop it getting any worse. I'm very lucky in that my medical team have got lots of other people that they're talking to and resourcing to try and find out more answers because I think that the chemo is actually affected the mitochondria in my cells and so I'm not using oxygen properly and so all sorts of other things. But it just means that I'm you know trivial things I don't bath or shower unless there's someone home because I've passed out in the shower before and hurt myself. So little things that before I took for granted now I have to be more thoughtful about how I go about things.

Kellie Curtain: So is that the number one side effect of it, that you quite often faint still?

Pauline Prebble: No I'm pretty good with that. Now I usually get onto it before it winds up in me on the floor. But it's just yeah fatigue and breathlessness if I go up a flight of stairs I can't breathe. By the time I get to the top. So you know if I'm mucking around at home with our kids and you know we're dancing or whatever. I get to the end of it and I'm like oh I need to sit down. Whereas before we would have been going you know all night.

Kellie Curtain: And as we mentioned before it was six months after your active treatment. So it must have been a real shock for you. And was it mentioned to you at any point? Or was it in passing?

Pauline Prebble: I remember it was mentioned when I first saw the oncologist and for me the diagnosis from diagnosis to it came out was only a few days. So it was mentioned but at the time that I was in a whirlwind of a million other thoughts and it's like yep whatever just do it just do it. I didn't really give any thought to what it meant and what he said in hindsight I think those early appointments would have been really good if I'd taken someone else in with me other than my husband who was also in that state of shock. Taken that extra person in because at one of my surgical appointments I took one of the McGrath nurses with me and I didn't realize how valuable that was until after we came out and I sat there and said "What did he say about whatever?" And she was able to debrief with me and it's someone that's not on the inside involved in the same way. So in hindsight I wish I'd done that so that we could have then had a better discussion afterwards about how it would impact things.

Kellie Curtain: I think you've touched on a really important point there is that when someone is initially diagnosed with breast cancer that initial reaction is to get it out let's just do whatever we need to do to remove the breast cancer and whatever treatment. Do you think you would have done things apart from having a nurse with you as far as treatment if you'd known that this was going to be the long-term effect?

Pauline Prebble: Oh look definitely. Chemo wasn't particularly kind to me and so I was unwell during chemo and what have you. But. So what did I do? I rested all the time and I didn't feel like eating so I didn't eat too much and I lost weight. All of those things in hindsight I think if I'd actually thought about it, I would have done things differently.

Kellie Curtain: And it's what you were saying before is really sort of keeping it's a whole approach isn't it, Belinda?

Belinda Yeo: Yeah. I mean I think you know developing a cardiomyopathy. Obviously, you know had we have known that would happen of course we wouldn't want to give anyone that again. And in fact that's what we're trying to do now - I mean sadly but this is good - There is a cardio oncology you know service now being developed and worked in places certainly locally and internationally. Trying to I guess the most important thing is let's predict who is at risk of this and let's try and prevent it by not giving drugs that are going to cause these. And the difficulty in breast cancer is you know we wouldn't give these drugs if they didn't help and so we've really got to do better and work out who really needs them and who is going to be as safe as possible and we're never going to get that 100 percent right. I would love to be here and say you know we don't need to give chemotherapy at all and hopefully one day we will be. But I think we are getting better at giving chemotherapy and I think we are starting to think very hard and doing trials to really look at where the benefits are of the more toxic agents and where we can potentially spare patients and knowing about pre-existing medical conditions and patients age all of this needs to come in to that original discussion. And you know your interesting point about being diagnosed and treated and there is that fury around you know some would say "Isn't that fantastic you got treated so quickly?" but you know getting the treatment right is the most important thing. You know while everyone wants to do things quickly sometimes it's not the speed it's actually making sure we do things right and breast cancer is such you know it's a common disease but it's a bunch of a lot of different diseases and every patient is different and that's why it often takes us time to make the right decision.

Kellie Curtain: I think you just touched on a point that really shows how important it is to share pre-existing conditions sensitivities that sort of stuff so you can help your team better track what is a side effect of your treatment and what it might have been an exacerbation of a pre-existing condition. Quite often we fill out forms and not really think about you know previous this previous that. And like you said Pauline when they go through the possible side effects you're so focused on the immediate that you're not possibly paying enough attention. So Belinda, how do we know when something might be a side effect of your treatment particularly if it's after active treatment and when it might be something else?

Belinda Yeo: As in when it might be the breast cancer returning?

Kellie Curtain: It could be the breast cancer returning or it might be another condition.
Belinda Yeo: Yeah I mean this is a really difficult one because the end there's no magic answer to that and you know one of the most common questions that patients ask me at the end of their treatment is "right OK how do I know if the breast cancer is back? How do I know if this ache or pain ..." And it's hard because I don't think you ever know. And I guess that suspicion breast cancer is a frustratingly unpredictable disease sometimes. So what I usually talk to patients about is to say if you get a symptom that doesn't make sense or you get a pain that you can't explain and it doesn't go away then you know I invite them to come back. That's what we're here for. I mean we don't scan patients every year when you're well other than doing routine imaging of the breast because currently, and this might change, currently there isn't evidence to do that at a population-based level. But that's why I say to patients I'm here. So if there's something that you know you notice that you're worried about you should come back. And I have to say you know most of the time it still isn't breast cancer and it might be one of these rare late toxicities. You know shortness of breath can be a presentation of a lot of different things including you know problems of the heart. And so I think you do always have to think about it.  And I think having a good relationship with the GP and your specialist right from the beginning of your diagnosis is really important because we walk through the journey together from on treatment, off treatment and in follow up. So and whilst you may not be seeing your specialist you know a decade after treatment if it is a concern and it could be a possibility, I think it's very reasonable to come back into the service and have that discussion.

Kellie Curtain: So. If we're moving on to radiotherapy, what are some of the most common ongoing effects of radiotherapy?

Belinda Yeo: I mean skin changes can certainly be ongoing and persistent and changes in the site, so you know breast shape maybe. We know that potentially we can damage tissue underlying where radiotherapy goes. So for example the lung underneath or potentially causing problems with the heart. Once again particularly for left sided radiotherapy and so the arteries on the left side of the heart. So these are things again whilst rare possibilities for long term or late effects of radiotherapy and again coming back to things like previous smoking or current smoking certainly do increase the risk of these late effects being possible.

Kellie Curtain: Pauline you had radiotherapy.

Pauline Prebble: Yeah I did. So I'd had a mastectomy and so the radiotherapy was a bit different. They had to protect me in a different way because there wasn't as much there in terms of flesh. I had a few issues at the time. Kind of strange. I had...

Kellie Curtain: What fatigue and...?

Pauline Prebble: Yeah fatigue it got me but it was only you know within a couple of months that had resolved. I got quite nasty blisters but because I've got no feeling from the mastectomy I didn't notice I didn't notice I had them. And one of the nurses picked it up and she said it's probably a good thing I couldn't feel them. But nothing, for me, nothing really long lasting from the radiotherapy. I mean my skin does look different but I figure that's a small price to pay really.

Kellie Curtain: Belinda is pain a possible issue following radiotherapy?

Belinda Yeo: Yep so pain. I mean and I guess perhaps but the most common would be breast pain. So I guess in slightly different to the setting you were describing but this can be common. I mean after surgery after radiotherapy and I would actually argue even after the endocrine therapy that we give or hormone therapy. Pain after procedures is very common and for some ladies this is an ongoing problem for the rest of their lives and it can be short sharp pain that comes and goes at a bit unpredictable intervals or it can be pain that really is quite debilitating and sometimes that does involve introducing medical treatments or trying particular blocks or acupuncture and things like this I know a lot of patients do use these to try and help with pain.

Kellie Curtain: Pain is a very personal thing so it's what is painful to some person is not painful as painful to someone else. When do you reach out and say I'm not getting the answers? Like if you're not getting the answers or an explanation for what you're experienced no matter what side effects you've got is there a next stage? Do you always have to accept if a doctor says to you "No that's got nothing to do with it"?

Belinda Yeo: Well I would say no. I would. I would say you know if you know we don't always have the answers I mean you know I don't always know what's going on. But if you've got an ongoing problem then it is absolutely worth seeking out and remember maybe I don't have the answer as the oncologist but there's a whole team of us and the great thing is we do work in a team and so you know many minds are better than one. And you do have to sometimes think outside the square because you may have seen one thing happen you know 100 times in a row and this might be different. So no I think you continue to try and find the answer because you know these things can be very frustrating and very debilitating and they can affect your quality of life so that you can't move forward. The breast cancer may well have been many years ago. Yes. So I mean that's easy for me to answer. Maybe you should answer that Pauline!

Pauline Prebble: Look I've been really lucky I've got an amazing GP who I touch base with regularly and she's across all of the people that are looking after my treatment because I've got lots of people involved now. And if she's not happy with something she'll make contact herself. And so if I've got a concern I can just ring her and say What do I do about this or that and she'll say let me ring one of them and find out. I've also got a really dynamic medical team behind me. Who. You know where my oncologist said "look I've done some research". He actually pulled up the research that he'd done and he said to me "Look I found this this and this. I've never dealt with it personally. Leave it with me and I will take it to a few colleagues". And he took it to some colleagues here in Melbourne and one of them said "Oh yes I've had a patient that's got the same thing". So now suddenly we've got some idea of what the next step will be. And then he said there's an International Breast Cancer Conference later in the year. He's going to actually ask around there as well.

Kellie Curtain: So must be really comforting to feel like you're being heard.

Pauline Prebble: Yes. And even you know when I was at my heart specialist a couple of weeks ago he called in his senior and said I'd just like you to run through this data. So I had this other person I'd never met before but obviously very knowledgeable go through everything and say all we need to try this this and this and here's what I suggest. So for me it's very comforting to know that it doesn't rest with any one person that they're all in the loop together that they're working as a team. So it doesn't matter if it's the heart guys or the GP or the oncology team they're all working together and they all communicate well so that the outcome will be you know a consensus. It's not one person making decisions.

Kellie Curtain: I think another platform to bounce off what your experience is the BCNA online network which is a people who are going through what you've been through or about to go through and it's a really good wealth of information. Have you used the online network?

Pauline Prebble: I have. I would read it most days it just to you know catch up on various people that I follow on the network. But it's a great way for you to put something out there and then say what responses you get back and people have said and I've actually commented on other people's things when they've said oh I felt this or that and I'll encourage them to go to a GP or touch base with an oncology team and say this is what's happened because sometimes you feel like you know a bit of a tool! Oh should I be worrying about this? You know is this a bit over the top? It's like the day that I got diagnosed my first was my GP is "you're going to think I'm over the top with this, but" And she's like no don't ever think that it's too much. You know it's not an embarrassing thing. Just get it checked. So now I think post treatment the same applies. It can be easy to fob it off and go "I'm just going to look like a hypochondriac. You know I take all these pills and there's always I'm always whingeing there's something wrong" but you can't afford to ignore any of it. So if you build up a good rapport with your medical team then it's easy to go. "Just want to mention this has happened is that okay?" And they can say yes or no. And if they say no you can go away happy. If they say "we might get it checked out" again at least then you have that confidence that it's being dealt with appropriately.

Belinda Yeo: And I think that's absolutely the kind of approach that I would hope we would have is that you want to have that open door policy. Like I say when you're well you know we see you infrequently - once a year maybe twice a year with the surgeons. But I always say to patients "you know if you're worried about something, Chances are it's not going to be breast cancer. But if you don't come and ask me and we don't work through it you know maybe we're going to miss something. But more times than likely this is going to fester and then you're not really going to know the answer." And a good example of that is you know we cause a lot of problems with menopausal side effects particularly for ladies who are already perhaps they've been diagnosed around their age of what would have been menopause or they're going through menopause at the same time that we're giving them endocrine therapy. And often times you know we don't know is this their natural menopause causing this? Is this our treatment? Oftentimes it's a bit of both. And and and I'm a huge fan of drug holidays just to see. Because even we may well end up back on that same agent but if you and I both have an answer as to why these side effects are there or how much is contributing from the treatment you can then make clever and useful decisions about where to go.

Kellie Curtain: So don't suffer in silence.

Belinda Yeo: Yeah absolutely.

Kellie Curtain: So Belinda there are so many side effects that are possible with treatment and we've touched on pain and with surgery - lymphoedema that's a massive issue but we are going to cover that separately in another podcast. What about bones?

Belinda Yeo: Yes. So I think this is a really big issue and actually becoming a very central issue because we now have some very good treatment for bones. Bone thinning - so this may be something called osteopenia or even frank osteoporosis where the bone architecture is changed from treatment that can be because of treatments rendering women menopausal before their natural menopause. So and usually that could be chemotherapy induced but then we also give hormone treatments to either keep women menopausal or in fact deplete them of oestrogen to try and stop feeding any breast cancer cells if they're there. And unfortunately there is a risk of bone loss over time. It can happen early within the first year of treatment or it can actually be a delayed effect. And we know how important this is and what's really fascinating is that some of the drugs that are used in osteoporosis obviously not only can help to prevent this bone loss but there's some exciting data coming out to show that in postmenopausal ladies that at least these actually helped to reduce the risk of the breast cancer coming back. So we're again becoming very friendly with our endocrinologists who often see our patients at the same time as we do and hopefully we're being very proactive about this. But that's where things like exercise particularly weight bearing exercise is extremely important. I say it's your best friend. I say that on a daily basis.

Kellie Curtain: We thank you for joining us on Upfront which is a proud production of Breast Cancer Network Australia. This episode on the ongoing and late side effects of cancer treatment was made with thanks to Cancer Australia through the supporting women in rural areas diagnosed with breast cancer program. If you'd like to know more there are links to resources on our website BCNA dot org dot AU. And don't forget to take a look at the My Journey online tool which can be tailored to give you information on your specific diagnosis and treatment. The upfront podcast series is one of many ways BCNA offers support. Please contact someone in your health team with any individual concerns the opinions of our guests are welcome but not necessarily shared by BCNA. And we'd love to know your thoughts too so leave us a message on our feedback page. I'm Kellie Curtin. Thanks for being upfront with us.