Brain metastases and lung cancer

Hello and welcome to the ALK Positive podcast. In this episode we’ll be talking about brain metastases in the context of ALK-positive non-small cell lung cancer, with a panel that has been drawn from all sides of the healthcare journey.

I’m Daria. I’m a Consultant Clinical Psychologist, and I work in cancer and end of life. So I provide psychological support to patients, carers and also staff that work directly with people affected with cancer.

I’m Sharmista. I’m a Medical Oncologist, and I see patients who have specifically lung cancer, and I specialise in ALK-positive lung cancer. 

Hi. I’m Debra. I’m an ALK-positive lung cancer patient, but I’m also the Founder and Chair of ALK Positive UK. It’s a charity that we set up to support, empower and advocate for all ALK-positive patients across the UK and their families.

Sharmistha, as our oncologist here today, please could you define what brain metastases are? 

The definition of metastases is a cancer spreading from one part of the body to another part of the body. 

So with regards to brain metastases in ALK-positive lung cancer, we’re talking about the ALK-positive cancer cells metastasising and sitting within the brain. The brain is a very common site for any type of lung cancer to metastasise to. Specifically in the context of ALK-positive lung cancer, patients who are diagnosed with ALK-positive lung cancer will have a heavy burden of disease. 

And the brain is what we call a sanctuary site, so the cancer cells feel comfortable sitting there, spreading and growing there. In the olden days, so prior to us doing all this research and all this work within oncology, the prognosis and the diagnosis of brain metastases was very, very upsetting and the prognosis was actually very poor. In ALK-positive lung cancer, there’s a lot we can do. 

So first of all, the medications that we use, the ALK TKIs, the tyrosine kinase inhibitors, the tablets that we give our patients, most of them have excellent blood-brain barrier penetration, so they work really well in the brain. They control and they treat the brain metastases. So that’s the first fantastic thing that’s happened in the last ten years or so. And then other things we are now doing with brain metastases is we’re able to control the brain metastases with other treatments, such as radiotherapy, we’re offering surgery. 

So we’re really working very, very hard in controlling the disease, not only in the lung, not only in the bone, but really specifically in the brain as well, hopefully giving better outcomes for our patients.

So, with that, how does brain metastases affect a patient’s prognosis?

Obviously, the presence of brain metastases does affect the prognosis. But it doesn’t always mean that I would be saying to a patient that their prognosis is going to be massively affected, because of all the fantastic things we’re doing. 

So I’ve had patients, and I have patients now, with brain metastases who are living for many, many years with the presence of the metastases, but with them very well controlled. And clinically, they’re actually not struggling or suffering from any symptoms of the brain metastases because of the treatment that they’re taking. 

Now we know what brain metastases are, Debra could you explain how the progression of cancer into your brain has impacted your life in a holistic sense? 

So the first thing to say is any progression is bad news and is not what you want to hear on your appointment. But I think that when you get told that, yes, you’ve now got a brain met, it’s a little harder to take. I think because the first thing is, in the UK, we have to lose our driving licence for 12 months. So that’s the first thing. 

So suddenly, it changes, because you’re no longer able to do everything you want to do when you want to do it. Now, for maybe people living in cities, it’s less of an issue. But that’s a stereotypical idea, that people in cities don’t need transport. They do. If you’re a young mum, which a lot of our members are, and you’ve got to take children to school in the rain, you want to use a car to get them there. 

From a purely practical perspective, it makes life a lot more difficult really, because you have to plan. If you want to go out and you want to go somewhere far that is too far to walk, then you need to think about, well, how am I going to get there? Who am I going with to take me there? And you do feel a bit of a burden. 

I’m going to be honest and say that you do, because you just need people, whereas previously, you didn’t. You could get in the car, and you could do anything yourself, and you no longer can. So suddenly, even though you feel well, and mostly fine on the treatments, I’d say, then until that point, you don’t really feel a patient. 

I know we go up to the hospital and have appointments and have scans and various things like that, but you still don’t really feel like a patient. I do kind of feel like a fraud, because I look better than some of my friends. You know, I can get up those hills faster than they can. But suddenly, I now can’t be lead driver for my group of girlfriends. And they were more devastated when I told them I had a brain met than I was.

They were like, well, who’s going to drive us now when we go out, because I was always lead driver. So, yeah, it does have an impact, definitely. For some, it has a bigger impact than others. I think if you’ve got young families or you’ve got elderly parents you need to look after, just because you’re a patient doesn’t mean to say all other responsibilities fade away, then it can make life quite difficult from the driving aspect. 

I have to say, Debra, that yes, because when I first meet patients, in my first consultation, I actually say to them, because we’ve spoken about ALK lung cancer being having a better prognosis than what we were used to, that I would hope that patients start to lead your normal life again. And that’s apart from if the brain metastases are present. And because of having to inform the DVLA, that’s the one caveat. 

And I do find that… I imagine that must be really difficult. Because on one hand, I’m saying you can lead hopefully back to your normal life and I’m promising that, yet without the driving licence. 

This is what I’ve done for some of my patients, is if we get to a period of a year, so just around the time of a year on, when we’ve had good response in the disease out of the brain and within the brain, then we get the scans together. 

And we’ve successfully then written to the DVLA and we’ve requested and said, on medical grounds, this patient is absolutely fine, they have got no symptoms, never had any symptoms, their disease is stable, blah, blah, blah. And they have successfully then returned their licence. However, it takes a lot longer than… It’s not just a quick email, is it, or…?

No, it’s not. 

It takes a lot…

And COVID has had a massive impact. 

Yes. 

Some of our members have been waiting over 18 months to get their licence back. 

But going back to being diagnosed, we’ve had people make the decision to sell their car because they were the only driver in the house. So you can imagine, psychologically, for that whole family, it’s like, oh my gosh. And then you’ve got others who have got really nice cars. I think of one member. And yes, I almost think he went through a bereavement when he had to sell his car.

Because it was like, you can’t leave a car sitting on a drive for 12 months, doing nothing. So, yes. So when you start getting into it with different people and their life situations, it can have quite a bit impact.

Yes, every function lost is a bereavement in its own, and I’m sure that the driving is just one of the reminders that something is not quite right with you. 

Don’t get me wrong, I don’t want to create the impression that apart from the fact that you can’t drive, that’s the only thing that happens, that’s the only impact of brain metastases. Some people do get impairments... Maybe that’s how their metastasis is found, because they’re not getting regular brain scans. 

And in which case, their metastasis will continue to grow until it starts to cause side effects or symptoms. And then it’s looked into, and then that’s when they find it. Well, obviously that’s a much bigger brain metastasis than if you’re proactively looking for them. So that’s something we talk to our members about, about that choice and what that… But what the implication is. 

Because we hear so often that they come back and they say, no, my oncologist said I don’t need to worry until I’ve got symptoms. So we just put the other side of the coin of yes, that’s true, but what you’ve got to remember is to have got symptoms, it’s got to a size that it’s causing a problem. Being proactive means that you catch it when it’s maybe 1 mm versus 8 mm. 

And obviously, the effects of the radiotherapy that you might have on a 1 mm brain met versus an 8 mm brain met is going to be different. And so the lasting side effects of the radiotherapy can vary from one patient to another. 

And for some, the radiotherapy can start causing problems, especially as we’re living longer. We do have members who are now experiencing problems because of the radiotherapy they had several years ago.

So what Debra is talking about is when we give radiotherapy to an area, I’d say anywhere, but specifically in the brain, there is an amount of oedema and swelling and inflammation that you get in the acute phase. And then that dies down. But we’ve had patients I think Debra is alluding to, similar patients I’ve had where we’ve maybe treated with radiotherapy, very focused radiotherapy, to the different parts of the brain four or five times and small millimetres of disease. 

And if you do that repeatedly and if we’ve been following these patients up for six/seven years, those areas have been treated. So it’s almost like the scar tissue is actually showing up on the scan. And although it’s not the cancer there is not active, it’s the scar tissue and that inflammation, the dead tissue, that actually it's still in the brain tissue itself, so it’s still causing problems for the patient, not in exactly the same way as a brain metastasis would, but it’s almost like you’ve got a scab that is just not going. 

We’re following patients up for so much longer that we’re seeing these now secondary side effects of the treatment, which again, five/six years ago, we didn’t have a clue. So we’re working really closely with neuro-oncologists now. So as I said, I’m a lung oncologist and I specialise in lung cancer. But actually, a lot of my work, because I treat patients with lung cancer who have brain metastases and my ALK patients, I work really closely with neuro-oncologists. 

Because it’s almost like the patients have got an old brain tumour that we’ve treated, and how do we work with that, how do we have our psychologists… Just the other day, I was working with one of our physiotherapists who is actually a physiotherapist for patients with neurological disorders such as MS, and non-cancerous, but patient physiotherapists who are really focused on the neuro rehabilitation. It’s got nothing to do with cancer, but because patients are living so much longer and, as Debra is saying, it’s a different type of thing we’re now looking at and looking after. 

Yes. 

Debra, would you like to highlight any other barriers that patients have faced with having brain mets?

And then the other practical issue is around holidays. Because you mentioned you’re telling patients you can go back to normal life and go on holiday. Yes, if you can get travel insurance, yes.

Yes. 

I think the insurance companies need to get up to date with the science and the understanding of this type of patient that is now living longer, living well. 

And actually, it is ridiculous that the computer says no on so many occasions. And that’s another area that our group support one another with, because it goes around like wildfire if one person has managed to get a travel insurance. It’s like, where did you get it from? But it’s not just that. It’s, well, how did you answer the questions, because… Not dishonestly, but it’s how you explain what the treatment is. 

But there is no issue. There’s nothing wrong. They’ve got their two months of their tablets. They are absolutely fine to go off to Malta, and it’s just the way you word it.

It’s interesting. The concept of going on holiday is to have a break from everything. 

Exactly. 

And actually, because of the process of going on holiday, they remind you how unwell you are…

By asking you lots of questions about your health and putting lots of caveats into the holiday, well, the insurance plan. So it’s quite interesting that something we do to break from day to day is reasons why your condition is thrown back in your face. 

Travel insurance is a major bugbear for our members, it really is. But that shows how well most of us are living, that we’re having these moans. 

We’ve got people who run marathons, we’ve got people who are skiing and all sorts of things. And it’s like, well, we’re fitter than a lot of the general public. As I said before, I can get up those hills faster than a couple of my girlfriends. 

And I’m stood at the top, waiting for them. So there’s nothing wrong with them. So it’s really annoying that the insurance companies target this one area. And it’s lack of knowledge just makes them say no. 

But that’s one of the things we need to do as a community in oncology. 

ALK-positive lung cancer is one part of cancer, where there are many different cancers now where we’re getting such different survival rates and the patients, as Debra said, are healthier than somebody who has had four or five heart attacks, who continues to smoke and drink. And obesity…

Yes. 

Is much more riskier for them to go on holiday than a patient with that lung cancer. Yes. 

Daria how do brain metastases affect a patient’s psyche?

Well, there are two major things to be taken into consideration. What we discussed now is just the meaning of brain metastases, which are basically that the cancer is no longer curable but it can be managed as long as the individual responds to treatment.

But on a more mechanical level, there is no one single response to brain metastases. It really depends where the metastasis sits in the brain. So you may have individuals that display problems in motor coordination because the brain metastasis is in the cortex part of your brain or people that may have visual-spatial difficulties because the metastasis sits more at the cerebellum part of the brain. 

Or patients will display personality changes. That occurs when the metastasis sits more in the frontal lobe of the brain. And I had situations, for example, where individuals change personality overnight. And what we do with the families that are more affected is explaining that this is something related to the brain metastases and especially where it sits. 

So for example, I had a gentleman who was a keen gardener all his life. And one day, he just lost interest in gardening, but he acquired a new interest in going out and socialising in the pub. His wife was devastated. But what we explained to his wife is that he was functioning, that somehow he was functioning differently but he was still functioning and he was still happy and content. 

But we had another situation where actually the individual with the brain metastasis had something called hemianopsia, which is basically become blind on one side of your visual area, so maybe the left area or the right area. And her husband was completely very, very anxious because she started to brush her teeth with his razor blades, because the way they were actually putting their toothbrush was in the part of the brain that was blind. 

So she just picked up the first object. And when I just gave practical advice like, look, move all the toothbrushes on the right area, the individual started to function normally. So it’s about giving a mixture of psych educational and also practical advice to families to manage. And if you manage well, there is no reasons why the family cannot function to an optimum level. 

Can I ask? With ALK lung cancer, we’ve discussed that having a metastasis in the brain and having a metastasis in the bone is probably not much different. And actually, if you have metastases in the brain with ALK lung cancer, you could argue you actually have better treatments and targets, because we’ve done so much to work on the brain.

Because I certainly feel that when I tell my patients, if I have to break that news, that the… Or patients will say to me, has it gone to the brain? And actually, then if I say yes but then I try and explain it’s the same or not even as bad as if it’s in the bone, but patients do not… You don’t perceive that, do you?

No, because we hear of people whose brain metastasis was identified by them having a fit. 

Right. 

And so people fear going out on their own. 

Yes. 

And we do have members who say, in the early days, I wouldn’t go out on my own once I was told I had brain mets. 

Because of seizures. 

Just the fear of them. And we had one who wouldn’t… Who had a very young child and was like, well, I need someone with me at home all the time now, because I could have a fit at any time.

And so yes, it can create a great deal of fear and anxiety. And I think that comes down to individuals. If you are of a more nervous disposition in the beginning, you’re not going to change that when you get diagnosed with ALK. It only exacerbated it, I think, so yes.

Let’s go back to the meaning. Having something, an alien something in your brain definitely has a different emotional impact than having something in your bones or in your spine. The bones are not considered part of your personality. The brain is. And also the brain is perceived much more fragile. And I think people can tolerate cancer if they label it as a physical problem. 

But when the brain is involved, it’s no longer just physical. It is also psychological, it’s cognitive, and the brain controls all parts of our functioning. And people are very anxious to lose that. So I think people adjust better to a concrete, physical problem rather than something that overlaps into our personality and emotional wellbeing. 

The brain is our control system. 

Yes. 

And if something is there and it is alien and it could damage it further, obviously, it has a massive psychological impact. And also, if we look at other types of cancer, brain metastases seem almost like the most final.

Yes, which isn’t actually true. That’s the thing. Yes, but that… 

But we need to look at what people know. 

Yes. Exactly, yes. 

And people know what the neighbours told them, what… 

Yes. 

People respond to cancer depending on the experience they have of cancer. And if the neighbour had, for example, breast cancer and died after developing brain mets, that is what they know. And people’s expectations and emotional response is based not just on what the doctor tells them but also what their life tells them. 

Exactly. Yes, that’s… Yes. 

Yes, definitely. Yes, it’s bigger than just having, yes, cancer go to the brain. It definitely is. Yes, it’s… 

Because there are lots of other things that come with it…

Yes. 

As in emotionally. 

Yes. 

I can… Yes. 

They explain, look, actually, in this particular type of cancer, it’s much more treatable than if it moved to your bones. Because people need to have the information.

Absolutely.

So coming back, Daria, what approach to do you take to someone who has brain metastases?

Well, there is no single approach, because as I explained before, it depends on how the patient presents, if there is mechanical issues, if it’s more personality. We were talking about a physiotherapist here, a psychologist, and the best approach is a holistic approach. You cannot approach one side effect of cancer just from a medical or a psychological viewpoint. 

We need to work together. And we work in a context of multidisciplinary teams, where we share our competencies to make sure that the care we offer to the patients is tailored to their needs. So as I said to you before, some of the work we do is psychoeducational. Other work will be just about practical advice, like moving that toothpaste in the area of the brain or pacing yourself. 

So it really depends. It really depends on the presentation of the patients. A lot of people say to me, what do you say to people? It’s not one thing, because from each individual is a new study in its own right, and there is no one advice that fits all, so…

Debra, what do you think should be communicated from an oncologist to a patient?

From our perspective within the charity, our stance is it should be a discussion with the patient and a patient choice. Whereas, at the moment, in some instances, it is the clinician deciding if the patient should have a brain scan at base.

We’ve had loads of instances where people have come back and said, but my oncologist has said if I have a scan and they find something tiny, it won’t change the treatment, but it will mean I lose my driving licence. Now, that’s an interesting one on diagnosis, because of course, if you start someone on any of the TKIs now, they cover the blood-brain barrier. 

You’d just start the TKI, because it’s going to cover the brain met anyway. So if you were a newly diagnosed and you have a brain scan now and they find the 1 mm, you have to stop driving for 12 months.

The argument for, I suppose, continuing to scan would be that if anything new occurs, or if that 1 mm becomes 4 mm but everything else is well controlled, you would then consider radiotherapy. 

Absolutely, yes. 

So there are two… 

But maybe… Well, maybe you don’t have a scan right at the beginning. You start the treatment. And at the first scan post starting the TKI, you not only have the body scan but you also have a brain MRI at that point. 

So you could say that if you started the tablet without scanning the brain, and then two months in, we find there are brain metastases, we don’t know if those brain metastases were present at the beginning, so we don’t know how well the TKI is working within the brain, which I suppose you could argue doesn’t matter, because nothing has happened in those two months. But if, in those two months, the brain metastases do develop further, some people might think it’s quite a risky thing to not know.

And if the brain metastases are progressing further and you have not been aware of them, then you’re not able to treat, for example, with radiotherapy or even with surgery or any kind of treatment. So I do… The question that we’ve been asked is what should we communicate with our patients, and I think there’s no right or wrong answer. I think that you have to look at the patient, look at where they’re living, look at their symptoms. Obviously, if someone is coming in with symptoms that are suggestive of brain metastases…

It’s completely immoral to not scan and to see what’s going on, because you can work with that and you can help. So I think there’s no right or wrong answer, and I think that we have to look at each individual. If a patient is coming in with no symptoms and signs of any brain metastases, for example, then the consequences of unearthing these are devastating. 

And I’m talking with regards to losing your driving licence, the psychological implications that we’ve also discussed as well about the diagnosis of brain metastases. So I think if you’re going to do any kind of test, if you’re able to have a plan or a solution or you’re able to work with that, if you’re doing it for a reason, in order to help the patient, then it’s okay to do it, but yes, with the big caveat that there is a risk that, yes, if there are brain metastases there, you would have to inform the DVLA.

So I think it should be done on an individual basis. But I think it’s really difficult for the oncologist to be looking after, helping looking after the patient and to not know. Because you think, well, if I did know and if I do know, I’m able to do this, this and this. Like I say, we’re working with our neuro-oncologists so closely now, really able to offer such good treatments. And I think it’s really good, like we talked before as well about the DVLA, and focus a lot of our energy on changing that side of it…

Yes. 

Rather than maybe hiding our head in the sands. 

Yes. 

Because there is a lot we can do for the brain metastases, as we’ve discussed before. And I’m a little bit on the side of knowing is better, knowledge is power, because then we can treat it and we can do something. I wouldn’t like the knowledge is power if we couldn’t do anything. If it was going to make it horrible, that you couldn’t treat it and you couldn’t make it… Then I would actually say, well, what’s the point? And I do do that for… We do that for other instances in medicine. 

But we’re at a stage now where we can change things. And because we scanned before, because we gave the radiotherapy before, we’re getting to this era of understanding the different types of radiotherapy, the radio necrosis. If we hadn’t done that before, we wouldn’t be where we are now. 

Maybe the oncologist, especially in your area, needs to highlight that. Needs to make sure that when they break down news about brain metastasis they explain the difference.

And that’s music to my ears, because there are still too many oncologists that don’t manage patients in the same way as you do. And so that’s how we encourage our members to approach the subject of brain metastases. 

Personally, I’ve had brain scans all the way through, because I agree with you, I think knowledge is power and to find something at 1 mm has got to be better, even logically rather than scientifically or anything like that, or clinically, than finding something at 8 mm. That has to be better. So that’s the approach I’ve always taken. But it does have an impact for people. 

And I think people… The whole agenda in the NHS is around shared decision-making. And I think some patients say, oh well, I’ll do what the doctor says, and I think those days need to go. You have to own your condition… 

But I think… I work in a place where I was able to request a brain MRI and get the result the same day. And we’re lucky that in some parts of the United Kingdom, it’s like that. 

Things can be sorted if you have that informed decision-making process with the patient and the oncologist, and you explore everything. You don’t just say, well, if you have a brain scan and we find something tiny, we won’t change treatment but you’d lose your licence. 

It’s explaining about not having the brain scan, and the 1 mm brain met that’s not causing you any problems so we don’t know about it at the moment growing, and causing problems down the line when it becomes 8 mm and suddenly you’re finding weakness in your left arm.

It’s funny, because we are moving towards an era where we ask patients to take more and more responsibility towards their cancer management. And not everyone can do that. 

I had a patient that presented quite late with brain metastasis, simply because she knew something was wrong, and she did not want to lose her licence and she didn’t want to lose her job. And by the time she presented, it was quite advanced. But we are asking the patients to take too much responsibility at times.

And also, taking responsibility for your health means monitoring yourself. And when you over-monitor yourself, you may find things that are not there. And that may actually cause more and more anxiety.  

And these are the kind of patients that may repeatedly go to their oncologist to say, oh, I had a bit of blurry vision, can I have a scan? And create a culture where you need to strike a good balance on how much patients should take responsibility for their management and how much the oncologists need to take responsibility for that. I think people are quite anxious about what they are looking for, because they are not specialists in the area. 

And some people may minimise, some people may over-generalise, and therefore, there is no single solution to how to approach this. 

But they’re specialists in their life. The patient is the specialist in their life. And so it’s their… They’ve taken on their own responsibility in either whether they report the blurred vision or not. What’s done with that information is then my responsibility.

I think it’s very important to be recognised, there is a great variability, how much people want to take responsibility for their health. And that can cause sometimes people under-presenting or over-presenting with all sorts of symptoms. 

We’re seeing our patients for a long time usually, and many years, we’ll be treating and seeing our patients regularly, usually every month, every two months. Even if we’re dispensing tablets, we’re on the phone with virtual consults, so we know our patients well. So that again is part of individualised care, which in the NHS… In oncology, individualised care is specifically about the different molecular targets in the tablets. But actually, if you look on the holistic thing, you can broaden that definition to have an individualised care for each patient. So, absolutely. 

So if I have my young female patient, who is doing this, that and the other, who is educated, wants to know, is very… Then I will tailor how I see that patient. I will be different in my consultation to the 85-year-old guy who is like, well, actually, doc, you tell me what to do. And I won’t really tell him what to do. We’ll still have an informed decision-making consultation together, but he will be more led by me. 

And I’ll probably have a more in-depth conversation with the younger patient who has more ideas, who has her list of things, because she’s well informed.

Again, we need to be careful about that, because people change during treatment. So you may have someone that was very resilient to begin with, but towards the end of the treatment, there is a wear-and-tear effect, they’re emotionally quite burdened. 

Burdened. 

What key message should be taken away by our listeners?

For me, I think the wrap-up message is it’s very important to have a good discussion with your oncologist around the possibility of brain mets, because it is a high probability of an ALK patient developing brain mets, but also the options and explaining that it isn’t the end of the world. 

Many of us are living very, very well, still doing everything we were doing before whilst having brain mets. But for every individual, yes, it’s… Some have a better ability to put things in boxes and maybe shut the lid on the box because things are being so well managed. You know that your oncologist knows exactly where you are with your cancer, and so… 

But that’s the bit for me, is that you need a really good relationship with your oncologist. If you don’t have that, then maybe you need to think about moving, because it’s key to have that relationship with your oncologist. I say it, I trust, I put my life in the hands of my oncologist, and I absolutely believe he is doing the right thing for me. 

It is a key area of high emotion amongst ALK-positive patients. A lot of people get very anxious about the thought of them developing because it does have a physical and practical implication. 

You can lose your… You will lose your driving licence for 12 months as a minimum. It will impact you getting travel insurance. Unfortunately, it’s another box that they tick, so the computer says no. And yes, it’s an area that we need to talk more about. We need more people to understand that you can live well with brain mets. 

I’d like to say thank you to Sharmistha, Debra and Daria for sharing their expertise about brain metastases in ALK-positive non-small cell lung cancer.

Thank you very much for having us

Thank you