Professor Janette Vardy, medical oncologist
The thing about cancer is that it can make you feel a bit muddled.
You might be finding it hard to concentrate or starting to worry about your memory. Lots of people call this “chemo brain”. But is it actually caused by chemotherapy and what can you do about it?
In this episode of The Thing About Cancer, Julie tackles these questions and more with Professor Janette Vardy, a medical oncologist who has been studying these issues.
— Janette Vardy, medical oncologist
What is brain fog?
Julie and Janette explore the world of brain fog during and after cancer treatment. Many people affected by cancer say they have difficulty concentrating and remembering things, and multi-tasking can be a particular challenge.
These memory and thinking changes used to be called chemo brain, but now you might hear them called cancer brain or cancer fog or even cancer-related cognitive impairment.
This episode explores how thinking and memory can be affected at all the different stages of a cancer experience – at diagnosis, during treatment and after treatment has finished – and the best ways to cope with any changes.
How long it will last?
During her conversation with Julie, Janette points out that experiencing brain fog is often a part of the cancer experience – but she also emphasises that for many people the effects of brain fog will improve in the months after chemotherapy treatment has finished. For others, the effects can be ongoing, but there is support available.
— Anne, diagnosed with breast cancer
Symptoms vs impairment
Janette explains the difference between a cognitive symptom – how the person feels about their memory and thinking – and cognitive impairment – how the person performs in formal testing of their memory and thinking abilities.
Some studies show that people who have had cancer treatment can often still come up with the right answers, but their brains are working harder to do that – what Julie calls “pedalling faster”. And this can leave them feeling exhausted.
What can you do to reduce the effects of brain fog?
Janette encourages any form of mental stimulation – things like continuing to read, doing crosswords, learning a new language or musical instrument. And she says that aerobic exercise can help too.
For ongoing issues, there is evidence that online “brain training” games can help. And then there are what Janette calls compensatory strategies, ways to organise your life if brain fog is affecting you. For example, you can download apps that help you plan your day, use a pill organiser, and set the alarm on your smartphone to remind you to take medicines.
It is also important to tell your health care team and close family and friends if you are experiencing brain fog. They can provide extra support to help you navigate any changes.
— Phil, diagnosis with bowel cancer
Want more information or support?
If you heard something mentioned in the podcast, you’ll find a link to it below. We’ve also added links to other sources of information and support.
From Cancer Council NSW
- Changes in thinking and memory – fact sheet about cancer-related cognitive impairment (CRCI), sometimes called “chemo brain”
- Chemo brain webinar – a recorded webinar with a panel of experts discussing chemo brain and “clearing the fog”
- Cancer Council 13 11 20 Information and Support service – call 13 11 20 Mon–Fri, 9am–5pm, to talk confidentially to a health professional about anything to do with cancer
- Cancer Council Online Community – a supportive online community for people affected by cancer
- Coping with cancer – support online, in person and by phone
- Easy-to-read information about cancer – cancer types, treatments and issues
- Living Well After Cancer – ways to manage physical, mental and emotional issues after cancer treatment ends
- Exercise videos and information – a series of easy and quick exercise videos and more information about how to get involved in Cancer Council’s survivorship programs
- Cancer, Work and You – managing work after a cancer diagnosis
From other organisations
- BrainHQ – a cognitive training program with short exercises developed by an international team of neuroscientists
- Cognifit – a personalised program offering cognitive tests, memory games and brain training
- American Cancer Society: Chemo Brain – information about possible changes in thinking and mood associated with chemotherapy side effects
- Sydney Survivorship Centre – multidisciplinary team at Concord Hospital providing support to people after their initial cancer treatment, with regular workshops and research opportunities
The Thing About Cancer podcast, Cancer Council NSW
You’re listening to Brain Fog and Cancer, an episode of The Thing About Cancer podcast.
[woman] The very essence of all cancers is a change in the way that cells divide.
[man] I remember sitting in there thinking, you know, it’s not happening, it’s not real, it can’t be real.
[woman 2] It’s something that we don’t talk about.
[woman 3] This feeling of being overwhelmed − it will get better once you have a plan and you know what to expect and what’s going to happen. It’s not going to be like this all the time.
[various voices] The Thing About Cancer: A podcast from Cancer Council NSW. Information and insights for people affected by cancer.
Julie McCrossin: Hello, I’m Julie McCrossin and today, the thing about cancer is that it can make you feel a bit muddled. You might be finding it hard to concentrate or you’re starting to worry about your memory. Lots of people call this “chemo brain”. But is it actually caused by chemotherapy treatment and what can you do about it? And what exactly is this brain fog like?
Janette Vardy: So the main thing that people complain of is their memory and their concentration is not as sharp. The really classic thing for example is when people have to for example multitask, so where they’re doing more than one thing at a time. So it tends to be that if you’re sitting in a nice quiet room just focusing on one thing, maybe that’s not such an issue, but it’s the more real life situation where, you know, the kids are yelling, the TV’s on, the phone rings, and people who would previously cope quite well with that find that very difficult.
Julie: We’re talking to Professor Janette Vardy, a medical oncologist from the Concord Cancer Centre and University of Sydney. Janette has treated many people with chemotherapy and has a particular interest in this issue of brain fog.
Just to be clear, this podcast contains general information only, so we recommend that you talk to appropriate professionals about your individual situation.
You can also call Cancer Council 13 11 20 if you have any questions.
We’ll hear more from Janette in a moment, but first here’s Anne talking about how she gradually realised that her memory and thinking had changed after her treatment for breast cancer.
Anne: So I think as I was reflecting on how it affected me the first year, I think that, you know, I thought this is just stress, which I think it was. Second year you think, oh well I’m just trying to get back to normal and manage side effects and so it’s understandable I’m still feeling a bit sort of fuzzy. Second full year after treatment I’m thinking, you know I should really be better than this. I do think it’s improved, so yes I believe I am functioning better, but I think an understanding about it has been the most helpful thing, just acknowledging that yeah okay this is probably related to treatment and that it probably is going to improve but it is a you know a “new normal”.
Julie: At the start of this episode, medical oncologist Janette Vardy described how some people who’ve had cancer treatment find multitasking a particular challenge. Janette, welcome to this podcast. I understand you’ve been researching this topic of "chemo brain" or "brain fog". You hear people talking about it, but exactly does it mean?
Janette: Well interestingly it was actually a term that was coined by cancer patients. So it was mainly breast cancer patients and they were involved in support groups and started complaining about problems with their memory, their concentration, which they perceived as being due to the chemotherapy. And from that it was the patients that coined the term “chemo brain”.
Julie: And these days you sometimes hear the term “brain fog” or “cancer brain”, what’s it about?
Janette: So the reason why we’ve changed the term is we’ve since found that with increased research, the term “chemo brain” is actually not very accurate because what we’ve found in our research is that people can have problems with memory and concentration before they’ve received the chemotherapy. We just all assumed that this was a chemotherapy effect because the patients were saying this occurred after they started chemotherapy. But we’ve since found that perhaps a more accurate term might be “brain fog” or what we call it is more like, cancer-related or cancer-associated cognitive impairment. Now that’s a bit of a mouthful, but looking at a lay term, we’re tending to go more for “cancer fog”.
Julie: And what exactly does that word “cognitive” mean?
Janette: So cognitive really refers to how your brain is working and it encompasses a lot of different things like memory, attention. So what information you can take in, how it gets sorted in your brain and how you then retrieve it.
Julie: As someone’s listening to this who may have just got their diagnosis, what may they experience?
Janette: So the main thing that people complain of is their memory and concentration is not as sharp after their cancer diagnosis as what it was before.
Julie: And is this real?
Janette: I believe it is and I’ve been studying it now for about 13 years. So I think most oncologists would now agree that it’s a real phenomenon but there are still a few sceptics out there.
Julie: And what’s the basis of the scepticism?
Janette: One of the difficulties is that we don’t actually know the mechanism of what causes this. So our hypothesis was that it was due to the chemotherapy and may be causing toxicity to certain types of brain cells. But there’s been studies, including a large one that we’ve done in people with bowel cancer, that showed that the ones who got chemotherapy, their cognitive impairment was the same as those who had cancer but didn’t get chemotherapy. But what was very interesting was that for both those groups, they had a lot more cognitive impairment than a group of people who’d never had cancer who were of a similar age.
Julie: Now I just want to offer some reassurance here. I personally have had a stage 4 head and neck cancer diagnosis, I’ve had a lot of radiation and I’ve had chemotherapy, and here I am back interviewing people for Cancer Council. So although we may experience some changes in the way we think and remember things, most of us will return to a new kind of normal. Is that right?
Janette: Absolutely. So for most people this is a very subtle impairment, this is not dementia, it’s a subtle thing but for some of them it can have a much bigger impact than for other people.
Julie: Well let’s talk perhaps about the lower end and then what may occur for some. It’s been indicated, I think you’ve just said, that it can even happen before you have any treatment. So why would I be having difficulties with memory or thinking before treatment?
Janette: Well, when we first found this, we thought that it was due maybe to the, you know, people are clearly under stress, there’s anxiety, they’ve just been diagnosed with a life-threatening illness. But what we found in many studies is that there does not seem to be a link between anxiety, depression, distress and the actual cognitive impairment.
Julie: That’s so interesting because, as someone who’s had a diagnosis, I experienced a kind of shock that I do think muddled me up for a while. I felt the need to take someone to my appointments to take notes and so on.
Janette: I think that there’s a difference between the cognitive symptoms and the actual cognitive impairment. So there is a very clear link between stress, anxiety, depression and fatigue, and cognitive symptoms.
Julie: And just explain the significance of the difference between symptoms and impairment?
Janette: So a cognitive symptom is how the person feels, so they may feel “my brain is foggy, I can’t concentrate, I read the paper but I can’t remember what I’ve read” ¬– those are all cognitive symptoms. What then happens is we can do what we call cognitive testing, where we do formal testing of that person and see how they manage on an actual cognitive task that might be testing one particular area of the brain. So we might be, for example, testing their working memory, and we do a cognitive test and we come up with a score. And we tend to compare that to what we would expect other people of the same age, of the same education, how they would score on that. So when we talk about cognitive impairment, we’re thinking of the type of scoring that people get on maybe a battery of cognitive tests that suggest they’re a fair bit below where we would expect them to be.
Julie: So in terms of the symptoms, I guess it’s important to remember that people may experience this cancer fog or brain fog in different ways. Here’s Anne again, describing what it was like for her.
Anne: I went to an information night and the nurse there said her most common complaint from her patients is that they can’t finish a novel, and that was just a super eye-opener for me because I thought “oh my gosh that’s me” – you know, in two years I haven’t finished a book, because just concentrating on characters and outcomes – and so that was very reassuring to me. Because I thought “oh okay so it’s not just that I’m not trying hard enough or you know whatever”. Reading a novel is an example but other things that people talk about were, you know, you’re having a dinner party when you’re cooking, so of course you’re having a glass of wine, and you’re talking and you’ve got three things going and you’re, you know, greeting people, and it’s just all happening, no problem. And then even a year or two after treatment you’re like “no-one can talk to me, you all have to stay out there and I’ve got four timers and everything written down” and that’s when you realise, oh okay, this is really different.
Julie: I have to admit, I chose not to drive during my cancer treatment and recovery. And that was a very unusual decision for me, I love driving, I’ve even been a heavy vehicle driver, you know, so I’m a big driver. But I didn’t want to do that task, and if you think about it, driving is multitasking.
Janette: It is and I’ve had patients who have had fairly significant problems with cognitive function where they’ve said to me they forget how to get to places that they actually know very well and that they have this spatial problem and for them ¬– this is a sort of not the general, but a slightly more extreme – but things like they went to go to Aunt Mary’s house, who they’ve gone to many, many times, and they just can’t remember how to get there.
Julie: In a moment, I’d like to ask you for your tips if someone thinks they have this cancer fog, but just before we get to that, I’m concerned that someone could be feeling fuzzy-headed or find they are forgetting things, and there might be another cause that needs medical attention. What are some of the health conditions that may make you feel it’s a bit harder to make decisions or to remember things or to multitask?
Janette: So part of it for women, for example, may be that we know after going through menopause and immediately post-menopause that some people have cognitive symptoms. Looking more generally, things that can cause some cognitive symptoms but it would be short-term, may be as simple as an infection, a urinary tract infection particularly in an older person can certainly cause some cognitive issues. Unlikely, but something that as oncologists we keep in the back of our mind, is this a sign that cancer has gone elsewhere and in particular into the brain and there’s swelling there? That’s very, very uncommon in the situation where the only symptom the person has is that they think that their memory isn’t quite as good as previously.
Julie: And electrolyte imbalance? Dehydration? Anaemia? There seem to be a whole range of things, so tell your doctors what you’re feeling? “Is this normal doctor?”
Janette: Oh, absolutely. And it’s important that doctors actually ask about this symptom as well, and we would like to see doctors, oncologists, informing patients that this is a possibility. Just as we say that fatigue is likely to happen and we go through other side effects of chemotherapy, there’s enough evidence there now that this should be included on the list prior to chemotherapy, and then we should be doing regular checks, during and after chemotherapy.
Julie: When you’re having cancer treatment, you’re often on pain relief, even opioids, depending on your cancer. You have interrupted sleep sometimes, you experience fatigue – I’m assuming all of those can give you changes to your thinking and memory capacity, at least for a period of time?
Janette: Certainly it can cause problems with the cognitive symptoms, and we know very clearly that people with fatigue are more likely to have cognitive symptoms, if you’ve had a poor night’s sleep, you’re more likely to have cognitive symptoms. The testing – there doesn’t seem to be much of an association between the fatigue, the insomnia and the actual testing done. But one of the big issues that it brings up is a lot of these tests are not done in what we call real world situations. So when you do the cognitive testing, you’re sitting in a really quiet room just with one person, there are no interruptions, all phones are off and you’re just focusing on one task as at time. And it’s very difficult in that situation to be able to test things like multitasking and what can be called executive function.
Julie: So you need to start doing your tests in a busy office or a busy kitchen?
Janette: Well it’s interesting you say that, because we’re actually doing a study where we’re looking at trying to do real world testings. Where we get people to do a cooking task, a medication task, a financial task, and in some of them built into the task is that the research assistant deliberately interrupts the person – trying to make it more like the real world situation.
Julie: And I guess it’s complicated by the fact that most of us may not have a pre-cancer score to compare with?
Janette: That’s what makes the studies extremely difficult. So we don’t know where the person scored previously. They may have been extremely high functioning before and way above normal and they’re now within the normal range. So we would be saying this person does not have cognitive impairment but it may be a difference for that person that they’re very aware of having to work harder to come up with that.
Julie: If I may add a personal comment as someone who is four and a half years out of treatment. What it feels like inside me is that I have to work a little bit harder to be the old Julie, so I think I am the old Julie in terms of my level of function, but I feel I have to pedal faster.
Janette: It’s very interesting that you say t¬¬hat, because in the last 10 years or so, added to the types of studies that we do, have been what we call “neuro-imaging” studies. So these are studies where the person is often in, for example, an MRI machine and we do a scan of their brain but we do it while they’re doing a memory task. And we have a look and we see what parts of the brain are working. What we’ve found is, there’s a bit of variation between the studies but overall, what might be happening is that people that have had chemotherapy are coming up with the right answer but they’re using additional parts of the brain that those who didn’t receive chemotherapy, or the healthy volunteers, are. So what we suspect is that it’s like a compensatory strategy. So they work a bit harder, which might explain that difference, why they experience the cognitive symptom. They’re aware they’re working harder but they come up with the right answer in the end, which might be why we don’t see as big a difference on the actual objective cognitive testing.
Julie: So I guess you’re talking about people after chemotherapy because that’s mainly who you’ve tested, but the same effect may be seen in people with cancer who haven’t had chemotherapy, we just haven’t done enough research on that yet. And I have to say what you’ve found in those MRI studies certainly matches up with my own experience as a cancer patient, and it matches up with Anne’s experience after her cancer treatment too.
Anne: I think just the exhaustion or this irritation that I felt all the time. I thought “oh am I just less tolerant?” – you know, people talk about cancer giving you this sort of new view on the world and what you’ll cope with or what you’re willing to tolerate. But I didn’t feel like that, I just felt edgy all the time. And I just thought, “Oh is that depression? Is it stress?” But I think the required concentration to do what would be very normal tasks were exhausting because you just used so much more energy to do the same task.
Julie: You’re listening to The Thing About Cancer, a podcast from Cancer Council NSW.
I’m Julie McCrossin and I’m talking to medical oncologist Janette Vardy about the "brain fog" that some people with cancer experience. If you have any questions about this topic, or just want to talk to someone about your concerns, you can call Cancer Council 13 11 20.
For links to any of the resources or services we mention – or to listen to more podcasts – visit cancercouncil.com.au/podcasts and click through to this episode Brain Fog and Cancer.
So Janette, I guess our overall message is, don’t worry, this “brain fog” could be part of the cancer experience. But talk to your health care team to see if you can get any help?
Janette: Absolutely, and the other thing I think that is important to emphasise, Julie, is that for many this will improve with time after chemotherapy. Probably most people will have some problems with their cognitive symptoms while they’re on chemotherapy – and the reports are at least 70–90% while they’re on chemotherapy – for the majority of people that will improve within six months or so of finishing chemotherapy. So I think that’s the reassuring thing.
Julie: And I guess the same might be true for people who don’t have chemotherapy but still experience this brain fog during their cancer treatment. So what things can you do, when you start treatment right at the beginning, to give your brain the best possible chance?
Janette: I don’t have good evidence for this because we actually don’t know what causes it. But based on what can’t do harm and likely may help, I would say things like mental stimulation. So it might be continuing to read, doing crosswords, doing Sudoku. One of the things I think there’s really good evidence, oh the best evidence I should say, for is exercise. So it’s going to have benefits not just for the cognitive symptoms but for many other factors, which is probably a whole other podcast but continuing to do some exercise throughout treatment is really important.
Julie: Is there a particular kind of exercise that’s good for the brain?
Janette: I think it needs to be aerobic exercise.
Julie: What does that mean?
Janette: Basically, they need to be doing something that’s going to get their heart rate up, that’s what we want to see, that will increase blood flow. And so the best benefit for most cancer patients, particularly for cognitive, it would be aerobic exercise. So if, for example, you’re walking, you want to be walking fast enough so that if someone saw you they’d say “that person’s running late for an appointment”.
Julie: What about resting?
Janette: We used to say to people, “you have cancer, you need to rest”. We now know that the best treatment for fatigue is actually exercise, and so I think often families with the best intention will say, you know “don’t do too much, rest”. And it’s important that people work within their capabilities but people are able to do exercise, even when they’re on fairly tough chemotherapy regimens.
Julie: Oh yes, exercise comes up again and again in our podcasts, especially in the episodes on fatigue and sleep. If you do want to start exercising, check with your cancer team what’s best for you, and Cancer Council has lots of great resources and programs. We’ve put links to those on our podcast page at cancercouncil.com.au/podcasts and click through to this episode Brain Fog and Cancer. So I guess the key message is exercise, exercise and exercise, to the maximum of your capacity.
Janette: Absolutely, and if you get some help with the exercise, I think you’ll find that you’ll be able to move that along even more. So, for example, with an exercise physiologist.
Julie: So we know that physical exercise is important. Now we’re going to hear from Phil, who found that mental exercise along with physical exercise helped improve his concentration after cancer treatment.
Phil: With my head, you get foggy, you get a bit – you can’t concentrate. I’m an avid reader, I couldn’t read more than two or three paragraphs because, what did I just read? You’ve got to go back, read it again. That was hard, but I kept on doing crossword puzzles and word puzzles and whatever to try and exercise my mind, of course ¬– just to try and get the sharpness back.
Julie: So Janette, mental stimulation – you’ve mentioned games, puzzles and so on. The more challenging the better? Should you try to do things that are hard?
Janette: More challenging if you’re able to do it is great. Some people might find that a bit difficult. There is evidence outside the cancer world that learning a new language, learning a musical instrument –
Julie: Doing a course?
Janette: Totally – are all really good things for mental stimulation. We don’t have that level of evidence for the cancer fog. Of the evidence that’s best at the moment, I would say the two things are cognitive rehabilitation – so what that means is doing things like the brain training, that may be an online thing. And we have a study where we’re teaching people compensatory strategies, so things that they could do.
Janette: Such as using notes, using smartphones, setting alarms, decreasing the clutter on their desk – so those types of simple strategies. And we’re also looking at whether we can teach people how to, with attention whether we can improve that. At the moment, that’s what the best evidence is for treating the cognitive issues, however, we still have a fair way to go with how best to treat this problem longer-term.
Julie: So let’s turn to the question of the practical things you can do during your treatment and during your discussions with your team to manage the likelihood of the difficulty with your thinking. Should you always take someone with you? Should you always take notes? You’re just not going to remember like normal.
Janette: Yes, I think it’s important. If you know that this is a problem, you need to think about what we call “compensatory strategies”. So having somebody else along is a fantastic idea on many, many levels. Even if your concentration is good, it’s just so helpful to have somebody else to be able to concentrate, who may be hearing different messages.
Julie: And what about using reminders for medication and appointments and other things?
Janette: Absolutely. For example, if you’re having trouble remembering to take your medications, maybe what you do is you plug into your smartphone an alarm at the time that those medications need to be taken as a reminder, or you put it onto your computer. Using Post-it notes, putting on the fridge times of appointments – because that’s a classic thing that people say: “I was previously so organised but I’ve just missed many appointments or gotten the wrong times.” Again, putting that into your smartphone. People will forget things like family member’s birthdays, so things that you might not have normally had to do. Other things that I suggest people if they’re having some problems with their memory and concentration, is to try and minimise distractions. Simple things like doing the harder tasks at the time of day you’re freshest – so for most people that tends to be the morning but you’re setting aside the time to do those more difficult things. Also things like, you may need to break tasks down into smaller components to be able to do it, and probably an important one is turn off the phone, turn off the emails dinging in, again to try and minimise your distractions.
Julie: I actually kept a medication chart and it was one to check that I had done it – I couldn’t remember if sometimes I’d had my medication or not – but the other thing was, it was great to show your clinical team, because many of us are patients as outpatients now.
Janette: That’s correct, and I think that’s a great idea. People can do it for medications, for example, with a dosette box. And you might think, “I don’t need that, but if you’re forgetting medications, that’s a great way because you can actually check whether you actually took it or not, as opposed to “Hmm, I think I took it but I’m not quite sure.”
Julie: And a dosette box is a pill organiser with separate compartments for each day of the week and different times of the day. So you or a family member or a friend can load it with all the pills you need to take at those times. Or you can get the pharmacist to do it for you. And then you always know whether or not you’ve taken your medication.
Janette, I’m wondering whether there are any medicines or herbal therapies that can help with improve your memory if you are having trouble?
Janette: So in a word, no. There’s not good evidence for any of those. There have been trials done, there are ongoing trials being done in those, there’s been things like using stimulants to see if that helps. The bottom line is, I don’t think there’s any good evidence for those being used outside of a clinical trial at the moment.
Julie: As one of the strategies, as well as talking to your health team as you go along about what’s happening for you and keeping them abreast of how you’re feeling and is there anything they can do to help you, is it good to tell your family and friends? So they can be aware that you might not be quite your normal self?
Janette: I think that’s important, particularly if you’re having cognitive symptoms that are impacting on what you’re doing. Even if you make a joke of it, oh you know you’ve forgotten something and that’s the chemo brain. Because people have said to me that in a more extreme case, where they don’t like meeting with other people or they’re decreasing doing tasks because they’re worried about what other people will think. Whereas there will be, you don’t want to tell everybody, but there will be a circle of people that can really support you with that, so it may be that someone comes along and they take the notes or they remember to put the reminder into your smartphone because you may forget things like that. It’s only where there’s an issue.
Julie: And if I could just talk as a cancer survivor myself, you’ve mentioned a few times the word “subtle”, that some of the changes are subtle. And I found that when I tried to talk to my friends and family about it, they constantly reassure me: “Oh, no! You’re just like you always were!” – and I know I’m not, I feel intuitively that I’m having to work harder I’m struggling a little. But I just share that for listeners that it may be that people don’t notice the change, and it may be other cancer survivors you need to talk to for some empathic understanding.
Janette: And there are blogs just devoted to this topic with cancer survivors.
Julie: Let’s go to the world of work some people keep working, either full- or part-time during their treatment, and others of course will return after treatment. But are there any tips for what you can tell your boss or employer to help manage this transition back to full cognitive capacity, to get rid of the fog?
Janette: I think if I can just take one step back from that, one of the things we often find is it’s actually when people return to work that they first notice the problem. So some will definitely notice it during their chemotherapy or their cancer treatment, but others say it really became apparent once they returned to work. And it’s particularly in people that may be in jobs that are more intellectually challenging that notice it the most. And I think it goes back to when they’re at home, they’re able to manage things, work around their own timetable, but suddenly when they’re having to multitask again at work – that’s when they notice it.
Julie: So if you are finding that difficult, should you tell your employer?
Janette: I think it’s really important to be upfront with your employer and your work colleagues if you’re having some cognitive issues and let them know, because in most circumstances they will really try and help you. But if they don’t know, they won’t understand why you may not be functioning as well as what you were previously. Some people are scared to actually mention it, and I’ve had patients whose employer does not even know that they have cancer. And I think that certainly makes the situation a lot more difficult.
Julie: If you do tell your employer, what sorts of things can they do to help you?
Janette: It might be going back part-time to start with, reduced hours each day. Things like maybe not doing the really challenging things that you did initially, and working up to that. In some cases, people might be comfortable having an assistant who is able to overview some of the work. And again, just things like trying to minimise distractions and having the person not working to stressful deadlines, which is easier said than done, in some work situations.
Julie: And I guess in some work situations, there could be safety issues, so you want to be upfront if there is a safety issue, I assume?
Janette: Yes, I think definitely.
Julie: And you can find out more about working during and after cancer treatment in Cancer Council’s booklet Cancer, Work and You. You can get a copy by calling 13 11 20 or go to the link on our podcast page at cancercouncil.com.au/podcasts, just click through to this episode Brain Fog and Cancer.
Janette, I want to come back to that question of reassurance. If someone has just had a diagnosis and has listened to our discussion, they might be thinking “Oh my goodness me, what am I in for?” So what’s our basic message to them and our reassurance for the bulk of people listening to this?
Janette: I think it’s important to know that you may well experience some cognitive symptoms while you’re going through your cancer and cancer treatment. For most people, this will be subtle and you’ll be able to get by with the assistance, particularly if you’ve got supportive family and friends. And for most people, with time away from treatment so usually within that first six months post-treatment, there will be improvement.
Julie: And for that small percentage for whom there is ongoing challenges, where they think “something’s not right”, where’s the best source of help? Say it’s a year or two and you still think you’re struggling a bit?
Janette: I think the important thing is that you make sure that you discuss it with your oncology team. For people that are still having quite major issues, there are a couple of strategies. So if it’s really impacting on your way of life, I think it would be important to ask to have some formal neuropsychological testing done.
Julie: And what does that mean?
Janette: So this would mean going to see a neuropsychologist who specialises in cognitive testing and interpretation. What they would be doing is be looking to see what particular aspects of cognition, what we call cognitive domains, are affected and many people will actually be reassured to find that they probably are within the normal range. Now, of course, what that doesn’t tell us is what their scoring was prior to their cancer, so if someone’s been incredibly high scoring previously and may have dropped a significant amount but it’s still within normal, that doesn’t tell us. But for many people, it’s reassuring, one – just to have some education about the situation and whether or not to have the cognitive testing. The other things that we have looked at is what we can nickname “brain training”. We had a very large study where we had half the people did a brain training program which is available online and they do exercises at home, which from the point of view of the person doing it is a bit like playing computer games but these are designed to try and help memory and concentration. And what we found was that there was really good improvement in the cognitive symptoms, in the quality of life and even, interestingly, in fatigue. The bottom line is, it’s not going to cause any problems and some people find it helpful.
Julie: We’ll put some links to brain training apps and programs that you can find online – just go to our podcast page at cancercouncil.com.au/podcasts and click through to this episode Brain Fog and Cancer. Janette, if you do want to get some testing done, how do find a neuropsychologist?
Janette: Probably the best thing to do is to go through your GP. They will hopefully have someone within your area. Unfortunately, it will be hard to get someone who has a special interest in the cancer, but that’s not a problem for just doing the basic testing. Also if you’re being seen at a major hospital, teaching hospitals will also have a neuropsychologist. But just to be warned there’ll be a waiting time.
Julie: Okay, so for someone listening to this, it may be that many of us during cancer treatment experience some cognitive symptoms, some change to the way we think. But only a small number of us will probably go to the extent of getting formal testing and a confirmation of change.
Janette: That’s absolutely correct.
Julie: And if you are grappling with this issue of brain fog, remember that you’re not alone and there is help available. Anne had to manage these issues after her cancer treatment and that’s what she would like you to know.
Anne: Seek out help, because there are some things you can manage but really it is whole new territory and the effects are ongoing, so find some help that maybe then will set you in the right direction.
Julie: Well that’s it for this episode of The Thing About Cancer. Thanks to Janette, Anne and Phil for sharing their insights.
If you’re looking for more information, you can ring the Cancer Council 13 11 20 Information and Support service from anywhere in Australia, or go to cancercouncil.com.au/podcasts. If you have any feedback on this episode, we’d love to hear from you, so leave us a review on iTunes or on our website. If you’d like to subscribe to the show, you can do it in Apple Podcasts or your favourite podcasting app.
If you found this episode helpful, you might want to listen to our podcast on sleep and cancer. In that episode I talk to psychiatrist Catherine Mason about how cancer affects sleep and how you can sleep better.
Catherine Mason: I would caution against getting too fixated on sleep because one of the ironies about sleep is the more anxious you are about it and the more determined you are to get a good night’s sleep, the more difficult it is to actually get a good night’s sleep. All of us have had periods in our lives when we didn’t get very much sleep; good sleep is ideal but it’s not catastrophic if you’re having problems sleeping.
Julie: You can find that Sleep and Cancer episode on our website at cancercouncil.com.au/podcasts.
The stories and experiences contained in this podcast represent the views and opinions of the speakers. They do not necessarily represent the views and opinions of Cancer Council NSW. This podcast contains general information only, and Cancer Council NSW recommends you obtain independent advice specific to your circumstances from appropriate professionals.
I’m Julie McCrossin and this has been The Thing About Cancer, a podcast from Cancer Council NSW.
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