Scans for lung cancer and scanxiety

This podcast has been developed and funded by Pfizer. Hello and welcome to the ALK+ Podcast, in this episode we will be discussing scans and scanxiety that ALK+ NSCLC patients face, with a panel that has been drawn from all sides of the healthcare journey. 

My name is Mya and I’m a Medical Affairs Advisor in Pfizer’s UK oncology team. 

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. 

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, please can you give an overview of the types of scans that you use in your clinical practice? 

Okay, that’s a big… I’ll try and summarise that, because there are many different scans actually. So, a chest x-ray is probably the simplest method of imaging. It doesn’t give us a lot of detail, but it can pick up something quite obvious. 

So, for example, right at the beginning of diagnosis, if there is a big mass there, you can see that on a chest x-ray. You can pick up infection on a chest x-ray quite easily, quite nicely. You can pick up if there’s fluid in the lining of the lung, which can be something that some of our patients can experience. And then sometimes, you can even pick up the different causes of the fluid, depending on which side it’s on. 

And for patients, they can have the x-ray and you can see the x-ray in front of you within seconds. So that’s quite nice for patients, if you want something quick. If it’s an obvious thing, like is there fluid in my lung, you can see that on an x-ray. Then you have a CT scan. So that’s using computer based images to scan. And you can get more of a 3-D dimensional assessment, and that’s a lot more detail. 

So you can look at the lung tissue. You can look at bones. You can look at whether there’s fluid, for example, infection. You can tell the difference between, sometimes, infection and if it’s likely to be infection, inflammation or if it could be something more serious, like malignancy. Moving on further to that, there are scans called PET scans, which use a slightly different type of dye, and then it’s actually done in the Department of Nuclear Medicine. 

And that’s a scan which we usually would use if we’re really struggling to see if something is maybe of a malignant nature, so something related to the cancer, or if it’s maybe something infective or something related to treatment, such as inflammation from either radiotherapy or the drug itself. And as patients are moving through their treatment – they’re maybe having tablet treatment, they’re having radiotherapy treatment – we can use a combination of sometimes a PET scan and the CT scan to try and assess what’s going on. 

And MRI scan is another type of scan, which isn’t so good at looking at the lung tissue itself. It’s very good for looking at soft tissue. So if there’s maybe a swelling in the knee, for example, or a joint, then an MRI scan is very good. Within the brain, we’ve talked about brain metastases – the MRI scan is a really, really good way of picking up if there’s an issue within the brain, better than a CT scan. 

So these are the main types of different imaging. I may have missed out… I’ve missed out ones that we don’t use that often, but these are the main ones I would use on a day-to-day basis, these four things. 

Daria what exactly is scanxiety and how does it affect patients?

Well, it’s actually what it says on the tin. It’s an anxiety related to scans. And it could present at different stages of the scan. It could present as an anticipatory anxiety, weeks before the scans or even months before the scans. It could present at the time of the scan, almost like fear. The response normally does come across a bit like a claustrophobia. So patients report fears of entering in a small area or tube, MRI scan. 

Or it could present after the scan, the famous two weeks following a scan, where basically your life is in the hands of someone else. And the patient is very aware that the outcome of that scan is something you own but someone has on a computer system. So it’s very difficult for our patients to conceptualise the fact that your life is in the hands of someone else. 

So it really depends on the type of individual. Worrier patients normally tend to get quite anxious prior to the scan. Quite interestingly, very often, patients do not realise that they’re anxious because of the scan. What they find is they become more irritable, tense, and lack of concentration. Their sleep pattern goes all over the place. 

And then when they come to the session, you just ask questions like, oh, when is your next scan? Oh, actually, yes, that is in two weeks’ time. And that makes sense to them. And sometimes understanding why, all suddenly, we become more anxious or worried helps in its own, alone. You don’t have to do any more than just explaining to the patients it’s quite normal. This is something that a scan is coming up. Or another thing that causes people great anxiety is anniversary. 

Sometimes, they do not realise that actually around the time they start to become strangely anxious is because it’s their one-year anniversary from when they had the first scan and when they found out that they had cancer. So scanxiety is literally that. It’s an anticipatory anxiety that can present at different stages of the procedure taking place. How do you help people? Very often, it’s just normalising their response and also reframing. What it means, reframing? One of the things that people associate with scan is the trauma. They found out they had cancer, very often, or they found out they had definite cancer after a scan. So scans are associated with traumatic episodes and repeating the scan retraumatises people.

And that is why, sometimes, it’s very difficult for the individual to approach scans with peace of mind. And also, very often they say, every time I had a scan, after a scan, I had some bad news. Bad news. So, they associate the scan not just with the trauma but bad news. And so it’s very difficult to reframe the scan into a positive experience. 

But actually, what we do in the session with patients that present with a moderate-severe level of anxiety related to scan is reframing the experience, is help them to understand the scan is there to actually make sure that the treatment is working the way it should. And if it’s not, we can quickly switch. So basically, the more we know what is going on inside your body, the better prognostic outlook we do have. 

So it’s about changing the association from a traumatic experience into something a little bit less traumatic, but an aid to their prognostic outlook.

I agree with everything that you’ve said. I once read a piece and it resonated with me, and it was all about the living with cancer. 

And you can relate this to the scans in that: imagine you are walking around with someone walking behind you with a revolver to your head and there is one bullet in the barrel. You see the old-fashioned cowboys that do the barrel bit and go and play Russian roulette sort of thing. And it’s a bit like that with scans, because you walk around with your cancer all the time. But when you go for a scan, is it going to be this time that it isn’t okay?

That’s the bit about scanxiety as well. My father lives with me and so, and we have a really good relationship. And I know that he is holding his breath while we’re waiting to hear those results. And when we get the results, I just turn around and you could see the weight just drop off him. And my siblings as well, they’re like, “good luck” and “text me straight away”.

So, the first thing I do when I come out of an appointment, is I’m on text going, it’s okay, or, I’ll ring you. And they answer, and then I don’t have to ring them because they then know there’s something

Is this the time I’m going to get bad news? And it’s like that. It’s like walking around all the time with someone with this revolver to your head with one bullet, and you don’t know when they… So they fire, you go to a scan, is it going to…? Is that the time when it’s bad news? 

Also, psychologically, for us to recover from a trauma, we need in a position of safety. 

So we need to… The scan unfortunately never allows us to finalise the treatment, because it’s something that keeps reminding you, you had cancer, the cancer can come back. So, we cannot fully process the fact that we had a condition that could have shortened our lives until we are at the end of the treatment. The scan, unfortunately, reminds us that there is no such thing as an end of treatment. 

You may end the treatment from a pharmacological point of view, but the scan is a reminder: actually, there is no end to this. This is a long-term condition. This is something that you will never be able to just park in the past. 

It’s interesting, because when I was initially diagnosed, yes, it was almost as if you were describing me. 

The days before the scan was due, yes, I was really uptight and snapped at everybody, without realising, but also then realising that that’s what it was all about. So people just tread very carefully around me for a couple of days. And I thought, oh, as you get on, as you go further on and you have more scans, it’ll get easier because you get used to the process and… But actually, it doesn’t. 

And I think that, as a coming up to seven-year survivor, actually, sometimes it’s not… And it doesn’t happen every time. There are some scans you just go to, and you just think they’re fine. But others are linked with maybe the clinical data, because all… A lot of ALK patients read the clinical papers and they know their stuff and they know what the progression-free survival data is. They know the overall survival data. 

And so if you are coming close to one of those parameters, that scan then takes on a bigger significance than it previously might have done. So, yes. So I’ve been on treatment for 15 months now. The clinical trial data suggested nine months. So, yes, you just think, oh, we’re getting close to someone firing the bullet. 

So that’s one, I think, that some of our longer-surviving members have found, along with myself, that it doesn’t get easier, which I in the beginning thought it would. I thought I’d get used to it. But it varies with people. 

How is scanxiety felt across the ALK+ patient community? 

We’ve had some patients who have gone to their scan and have… They’re in such a state by the time they’re there that they haven’t been able to have the scan, which is doubly frustrating for them because they’ve got to… They know they’ve got to go through the process again. We try and encourage people to wear the right clothing, and we find that that helps. 

There’s nothing worse than being… Than walking around the corridors in one of those NHS garments that don’t tie up properly. However you try to do it, it doesn’t work. And so we say, wear something… Make sure you’ve got no metal on you, and then you can keep your own clothes on. And that gives you an element of control back which is… Well, I find really important. 

So I make sure that I’ve got nothing on that they can say, oh no, you’re going to have to wear something. So I think there are little tricks you can have by maybe taking control in that, wearing your own clothes to start with. But yes, I don’t think it’ll ever go away. 

And that’s why it’s very important that we create a culture in the oncology service that is psychologically minded so we can pre-empt things going wrong and ask those questions, would be any barriers for you to actually have a scan, what it means for you, and check things in a very simple way. It’s the meaning associated with scan, as I said before, if the meaning associated with scan is this is something that will give me a lease of life or if this is something that may actually capture the fact I’m dying. 

So it’s about the meaning. It’s not just about control. It’s the meaning you bring to the scan. And it’s also about previous experience. If you had a very… If you went in an environment that was very cold and the radiographer was not very kind, approachable and they treat you like… I had many patients who actually reported being quite traumatised by the culture of… In the radiographer department, where they felt there was no warmth. 

And sometimes, just having a bit of a more familiar approach and holding hands if it’s necessary, it would go such a way in terms of reducing the anxieties. So we bring more than just one dimension. For Debra, it’s about control. For some people, it’s about making sure that the environment they’re walking in is warm, it’s inviting, it’s respectful, and like you mentioned, it’s about dignity as well. 

Because very often, people experience feeling undignified by going into these procedures and being asked to move their arm in a certain way, having people walking in and out the rooms. This other patient said to me, I had seven people walking in and out, and some were students, I didn’t know who they were, but I was exposed. And they felt very undignified. So scanxiety is not just one thing. Again, it’s about making sure we look at all the variables that may cause people unnecessary emotional distress.

Having undertaken many scans Debra, is there anything patients should know before having their first scan? 

Yes. I think the other thing that can be… That patients need to know when they go for their first scans is around the MRI scan, because it is so noisy. It is incredibly noisy. So they give you earphones, they stick earphones… They give you earplugs, they stick headphones on you, and then they say, oh, we’ll play you some music, as if it’s going to override this hammering sound that actually makes your body shake. 

At one stage, there’s a section in there where it does. Yes, the number of times I… You have to pick your music carefully, because some you’ll be able to hear, but a lot of it, you can’t. But I’ve found, yes, actually, there are people now that… I’ve been going so often that the staff in the room are like, oh, I’ve seen you before. And it’s like, yes, yes, and yes, I’ve got no metal on, it’s fine. They’re like, oh, right, fine, come through and whatever. 

And I find people, the staff, they have been really friendly. But I agree, having that approach where someone is a little bit more mechanical would be really disconcerting and wouldn’t be very nice at all. I think, going back to before you go into the scan, being part of the support group, people come on very often, we get a lot… 

Because there’s 570-odd now. So we get a post very often saying, I’m going for a scan soon, oh, god, I’m already starting to feel anxious, and it’s… But having other people jump in and go, of course, we know… I know exactly how you’re feeling, you need to keep yourself busy, what about doing X, Y and Z or… But having that support normalises it as well. And that’s important, because it is part of having cancer.

And nobody tells you at the beginning that you will live your life by three-monthly cycles. But they’re not really three-monthly cycles. They’re less than that, because for some, the scanxiety starts two weeks before their scans are due. Well, then suddenly, you’re living your life by two and a half months. So it can get tiring. 

I think that’s all linked into the scanxiety. And at the moment, the reporting is not great. People are waiting five weeks post scans to find out what their results are. Now that is a real time of worry. 

Because you know, somewhere in the system, people know whether I’ve progressed or whether I haven’t, but I don’t know. So yes, and that’s… It is getting worse. That reporting is getting… We’ve got more and more members telling us that I used to wait two weeks maximum, and I would know my results, and now it’s gone to three, four weeks. And we’ve got some people that have reported five weeks. 

That’s hard. That’s very hard. Yes, I don’t know… I’ve not experienced it myself. I wouldn’t want to. I wouldn’t want to wait five weeks for results. 

There is actually a national shortage of radiologists. 

Yes. 

So again, I’m lucky where I work that we haven’t… Up till very recently, we also… Very few of my patients would have to wait. They are waiting a little bit longer, and we’ve put loads of things in place, so prioritising oncology patients, prioritising… 

There are special codes that we now use with our radiologists. It’s again having the… If you work in a multidisciplinary approach, the radiologists know which… We have a special way of getting those scans done quickly and reported quickly so that then we can give our information as quick as possible back to our patients. There’s nothing worse… Well, there are lots of things, but it is very frustrating and really bad if a patient comes all the way to an appointment, expecting a scan result, and we don’t have the scan result there. Really, it’s awful. 

And unfortunately, that affects also the patient’s trust in people in a position of authority. And if the trust is not there, the anxieties always will be worsened, because you will not trust the person that is supposed to look after you. And if you do not trust what they tell you and the anxiety is based on unknown, how are you going to resolve that? 

So it’s very important for people to have realistic expectations, and being very honest and apologise when things don’t go the way they should rather than just expecting people building up resilience overnight.

I think, yes, it makes a difference if people acknowledge that the system is not working quite well at the moment, whereas a lot of people go into defensive mode of the system isn’t working rather than acknowledging the fact that it isn’t. 

You can forgive better if someone has acknowledged it and said, I’m really sorry, it must be terrible or horrendous that you’re having to wait this long, I wish I could do something about it, but I can’t at the moment. 

We need to accept that anxiety is there, but we can only normalise it. And when patients say to me, I’m very anxious, sometimes I just say, okay, you are anxious, we need to accept that that anxiety will sit with you. Doesn’t matter what we say, doesn’t matter what, there is no magic wand to resolve this anxiety.

However, the fact that we wrote books about it, we do podcasts about it, it shows that it’s not just… It’s a universal problem. It’s not just about you. And when people know that it’s not just about them but it’s a normal response, it very often helps in managing those anxieties. 

And acknowledging it, isn’t it? Because if you don’t acknowledge it, then you can’t move forward with it. You’re stuck. I’ve had patients who’ve refused or… Yes, have refused or found it very difficult to have scans.

And they don’t attend for their scan appointments, yet they’ll come to the appointment to see me, they’ll come and have bloods, but they… And it’s clear to see they don’t want to have the scan. And I think it’s things like putting things in place, like yes, those gowns are just horrendous, and then… Or having the scans… So I suppose having the radiographers and the radiologists who are around, who know that actually these patients have got perhaps a life-limiting illness, and these are not… It’s not a scan to look and see if my finger is broken. 

It’s a bigger scan than that, and it means a lot more. So if you can centralise a scan… So all our scans, we’re trying to do them within the cancer centre, for example, so that everyone has that understanding and acknowledgment beforehand, if we are able to. It’s difficult. I know it can’t happen everywhere, all around the world. 

Daria, what is your main advice for tacking scanxiety from a healthcare professional’s point of view? 

We need to create, again going back to the principle, a more psychologically minded culture, even in radiography. 

Every single individual that has direct clinical contacts with patients should have basic psychological skills to manage anxieties, and if they don’t have it, just make sure that they signpost to the right service. And hopefully, that service will be localised in their own oncology team. So it’s about creating a culture that is more holistic and more trauma-aware. 

I agree. And the environment should be set up to… We have to set up… That’s from the healthcare professional’s side, to try and set that up and have it as… It’s not going to be a nice thing, it’s not a nice thing, but to make it as comfortable as possible, things like the tea and coffee we have. Little things like that make a difference. I might want a cup of tea before or after, and it's there so that patients can have it immediately before or after, maybe not during, but yes. And I know they’re small things, but I think maybe that helps. 

And then I think coming in for the scan result, that’s as well how we can… We need to know and learn and work on how we can make that as comfortable as possible so patients aren’t waiting for two, three hours outside, waiting for a scan result, for example, and that they’re coming in, getting the result and then having the plans, moving forward. 

So Sharmistha, what services are available to help patients overcome scanxiety? 

So from my point of view, if it’s… Like I say, everybody suffers from scanxiety. If it’s of a very serious nature, where it is actually putting detriment on their care, so for example, patients not attending scans and not able to be compliant that you alluded to, Daria, then we have counselling services within each department. So certainly I do, and I’m sure all oncologists, many oncologists should have that, where you’re able to have… Tap into a psychologist and get help. 

Because I’m not a psychologist. I’m an oncologist. I can help with things, and yes, we’ve had training to try and help our patients and talk through things, but I sometimes need the help of a psychologist. 

I always think it’s quite… I’ve had only an MRI scan once for an ear condition, and it was really, really quite an experience. And I remember… And I was a junior consultant then or just a senior registrar, so I’d had many patients who had requested an MRI scan. 

I remember having it and thinking, everybody who is involved in having patients who have an MRI should have an MRI so that you can experience it and you actually know what it is actually like. And also, when patients talk about the music and they talk about the hammering noises, I can actually say… I’ve only had one, so I don’t want to claim… But at least I can relate a little bit to it. 

But having that kind of relationship, being able to relate as much as possible with our patients I think should help with… Could help with scanxiety. I don’t know if Daria agrees. 

Absolutely. But also, we need to look at the very extreme end. If the patient has capacity and decide not to have a scan, there is no law or legislation that will force the patients to do that. And sometimes, our role is to respect that is the decision of the individual. So scan is a fantastic tool, but it depends also on the individual, whether or not… 

I always say to patients, we are the munition, you are the weapon, you are the only one that can use the… Munitions without the weapon are absolutely useless, and it’s up to you what munition you use to try to fight this condition. So we need to be also quite respectful about the fact that sometimes, patients may make decisions that will completely go against our own values and belief around the treatment, and be tolerant of that. 

And one of the things sometimes patients complain about is the oncologist may take such a medical approach to this that they feel they cannot continue their relationship with the oncologist if they decide not to have a specific part of the treatment, when actually, I think that the oncologist… And I’m sure that this in your case is, definitely, you are very psychologically minded, but there is such variability. 

It’s about being respectful about what the patient’s wishes are. For example, I had a lovely lady who decided not to have treatment, because she was 84 and she said, I want to die with my lovely hair on. And I thought, yes, why? But everyone around me just said, oh, no, you have to convince her to have treatment. I said, no, she wants to die with her… She said to me, Daria, I want to die with my nails and my hair. It’s always been something that is quite important to me. And she died how she lived. And that is something we need also to respect. 

Absolutely. It’s not common but it’s not uncommon to have patients refusing many parts of treatment. And I think, of course, you would not want to force that onto an individual. But as long as they’re well informed, their relations or friends are well informed, then yes, that’s an individual’s choice, and we would try and work with that. But I don’t like giving up either. I’m not going to force a patient, but I’ve had a patient who was… Not a lung cancer patient, one of my gynae-oncology patients, a young lady, who did not like scans at all. 

And so we actually, in… We did actually simulate, in the clinic room, with her husband. We got chairs. And I was involved in it to try and help her have the scan, and I was making noises with my phone blowing. And you all laugh, and if someone had walked in, they would’ve thought, what is going on in this oncology clinic, but it was… And we did this a couple of times, the psychologist was involved, and then they continued doing this under their kitchen table. 

And then she had her scans. And we didn’t do that every time, but I just knew… I knew her well. And I thought, if I can… I didn’t know her that well, because it was the beginning of her diagnosis, but I don’t know, I just thought, if I can work with her and see, if she has these scans, then she can have treatment and she can live longer. So I don’t give up. 

This patient must have been completely… Would want to comply with what you did, because of what you did. Because that is an example of excellent oncology care, because how many oncologists would go to the extent you’ve done? And that really is the cherry on the cake. That is what will make the difference between life and death. 

Yes. And I think most ALK patients, I think we are slightly different. But I would say on the whole, it’s more the really feeling anxious beforehand. And what we do, we advocate a big tub of ice cream, a big bar of chocolate, your favourite movie, and get on the settee and indulge yourself. 

It’s a good point, what you’re saying. Those patients who are part of a service users’ group tend to do better. But those patients are actually accessing every single support system because they want to get better. Unfortunately, you do not have the data of those patients that are actually quite avoidant. 

No. 

Because they will not join in a service users’ group, and they will be those that come our way… 

Yes. 

Or may not comply with aspects of their treatment. And hopefully, this podcast may actually reach out to those people that may not be so confident to join in a service users’ group or are quite conservative in terms of how much, how far they would go in terms of treatment. 

What key message would you want someone listening to take away? 

Although scanxiety is a normal experience in most patients, we know that there is a good proportion of patients that may need support that goes beyond what an oncologist or clinical nurse specialist may be able to deliver.

Sometimes, scanxiety needs a specialist approach, and that is why it’s very important to have a dedicated psychological team around to make sure that compliance to treatment is optimum. But unfortunately, there is a great deal of disparity across the country, because again, the psychological support sometimes is perceived like the Rolls Royce rather than just the oil that keeps the machinery going by enhancing compliance.