Psychological burden of lung cancer

Developed and funded by Pfizer Ltd. This podcast is for educational purposes only and not intended to replace a healthcare professionals’ advice. 

Hello and welcome to the ALK+ Podcast, in this episode we will be uncovering the psychological burden that ALK+ NSCLC patients encounter, with us today we have an incredible 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 by cancer.   

I’m Sharmistha, 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. 

Debra I am sure our listeners would be very interested in hearing how you dealt with the emotional impacts of being diagnosed. 

Okay. So in the beginning, I did a lot of crying, definitely. And then you’ve kind of got to pick yourself up a little bit. 

It’s hard. I didn’t seek any emotional support. I had great family and friends around. And people are different. So I have a capacity to put things in a box, just shut the lid off, and go on about my business. 

And I was with a team of clinicians who I suppose, whilst not directing me to any services, they were very supportive in the early days. You have a lot of questions in the early days, and everything is a question. 

So I was incredibly lucky. I met another ALK patient, by accident actually, in the hospital, and we exchanged details. And I was relying on her, because she was five years ahead of me. And that was inspiring, to know that someone was… There was actually a human being who I knew and had gone to lunch with, who had done five years. It was like, right, okay. This is possible. And I think that’s the bit that, in the early days, is… 

Life’s going to be so short, and that can be harder for some people to deal with than others. We have had members who have… Their partners have been terribly affected and have taken to drinking. And we’ve had marriages fall apart, because the partner has said, I don’t want to deal with this. 

This was not what I signed up to. And has left. Can you imagine dealing with that on top of your cancer diagnosis? Surely someone would need psychological support in that instance. Some of our members are getting it, but not necessarily through the NHS. There are other sources, and so they have gone to them. 

Especially when they’ve got, maybe, teenage children, and I think they can be the hardest for them to get to terms with. Youngsters don’t really understand what’s going on, but teenagers… they’re going through so many changes themselves, aren’t they, you know. It’s not a great time for them. 

And then being told that one of their parents has got this. And it’s the implications of it. 

So it can be really hard. Ruth Strauss Foundation, they do a brilliant job of offering family support, and we’ve directed many of our members over to them. And people have come back saying, ‘gosh, that’s great. It’s just what we needed’. As I say, we’ve got our coach. People need different levels at different times, and I think that’s what the NHS, as a body, needs to understand. 

There is a point I would like to make, that the link between having cancer and suffering from depression and anxiety is really strong. And yet no one talks about it. Having cancer is, and walking around with it, is nothing. The psychological impact of having cancer is enormous. You get used to it, but in the beginning, you walk into a room, and you speak to someone you do not know, and they give you news that means that the life as you saw it, going forward, is no longer there. So, everything crumbles, and all your foundations go, and you’re left with, oh my God, so I might not see my children grow up. I’m not going to see them get married. 

I’m not going to pursue this career and go for the next job that I wanted to go for. I’m not going to go on that holiday that we’ve been saving for, because I might not make it to that year. And I think, it’s underestimated, that impact that it can have on people. And to get… this is why I think talking to other ALK patients is so important. You don’t have to join our support group.   

I’m not doing a plug for it. What I’m saying is, it’s important to talk to another ALK patient who’s further down the line and can show you that you can have a life. You can have a different life. It’s a bit shorter, we’re not going to need a nursing home, but hey, there’s benefits to that, because a lot of them aren’t worth going in. So, there is a bit of a silver lining there if you want to look at it that way. 

But you can live well, you can belly laugh, and you can’t ever see yourself being in a situation where you would be able to do that. Because in the beginning, it’s all consuming. You wake up thinking, ‘oh my God, I’m going to die. I’m dying’. It takes a while to get your head around the fact that you’re not actually dying. 

You have a condition where your life is now shortened. And we don’t know by how much. And that, again… I just remember myself, and a couple of days before being diagnosed, you feel immortal. 

That’s what human beings do. They’re always going, I’ll do that when I retire, or I’ll do that, because we walk around with this inherent… 

Denial. Denial of death. 

Yes, or assumption that we’re going to be able to do everything that we want to do. And when you get that diagnosis, it takes all that away, and then suddenly there’s nothing in front of you. It just looks grey. And I think that’s how I saw life for a while. Two of my friends said, come on we’ll take you out. And they took me to a garden centre.   

And they talk about it now, and we laugh about it. because they were pointing out all these things and I was almost walking around in a trance. Because it was like, this doesn’t matter, there’s no point in me buying this because I’m not going to be around to use it for long enough. So, there’s no point replacing this because I’m just not going to be here. And there’s a lot of that. There’s no point in doing… because I’m not going to be here. 

I mean, I love shopping, that is my absolute passion in life. Gosh, if I could never do that, that would be a real big problem. But even in the beginning for me it was like, there’s no point, because what’s the point in buying anything new. And yeah, the landmarks of… ‘oh my God, I might never see my son graduate or, get engaged or get married, or whatever’. 

I’m not going to be a grandmother, really, and I love kids, and it was almost my thing of, oh yes hopefully. I don’t see that happening. And so, there’s all that going on with people that they bring. But not just them, their families. So, that mental element of having cancer, I think is far bigger than having cancer. But so few people talk about it. 

So, people feel ashamed of not being able to cope. And they feel that everybody else is and it’s me. I’m weak. And actually, people aren’t, they’re crumbling behind closed doors. And I really wish there was more talked about it. And it would be explained, look this is going to hit you like a train. You know, you are going to go through all sorts of emotions. 

They’re all real. You are going to grieve the life that you have now lost, that you thought you had. So, it is a grief that you go through. And so few people talk about it in that way. And I talk about it to members who are struggling. And I’m saying, it’s perfectly natural. You’re bound to, life as you saw it has gone. But you can have a life. 

And that’s the bit where talking to people who understand, will give you that hope and inspiration. 

One member, yesterday, he failed on his first treatment after six months. That is devastating. That’s nearly as bad as his first diagnosis six months ago. He’s now got to go through exactly the same thing. But I was able to tell him, I failed on my first treatment after six months. And I did four and a half years on my next one. 

And he went, ‘oh my God, you’ve made my day. I had just lost hope’, they said. And I was like, no, don’t lose hope. But by talking about it, either to professionals, or another ‘ALK-y’, as we call ourselves, is so important. But the mental burden, and it is a burden. 

The mental burden of having cancer, is underestimated I believe, and it is swept under the carpet. And that makes it harder for patients to find the right help. Because they feel ashamed that they feel this way. 

And there is an awful lot of pressure of having this positive attitude. Which is wrong in my opinion. Because being always positive is not natural. 

Nobody can be, with or without cancer, positive all the time. And it happens to those people that believe they have to be positive all the time. That on a bad day, they feel like they failed themselves. 

Absolutely  

And that causes more and more sadness and depression, anxiety they feel like they let themselves down. When actually, we need to… a good oncologist, a good psychologist, a good service user needs to always strike a good balance between hope for the best and prepare for the worst. If you can do this, it’s realistic. It’s accessible and manageable for everyone. 

Absolutely. And people feel they’ve let their families down, if they have a bad day. And so, it needs to be talked more about, so then family can go, right okay, they’re having a bad day. And also, to talk about it with friends as well. We get so many people that say, ‘oh you’ve got to be positive’. 

And for some people they come into the group, and they go, ‘if one more person tells me…’ 

Tells me to be positive. 

Tells me, if I’ve got to be positive, I’m likely to commit murder. 

This is impossible. 

It is a silly thing to say, isn’t it? You could have a good day when you’re going out or even when you’re indoors and you’re doing something that you really love, and you suddenly realise you weren’t thinking about cancer for an hour or two hours or whatever. That’s great. But if you’re having a bad day.   

It’s okay. 

It’s okay, it’s real. 

It's part of the processing. 

It is part, absolutely. But too many people feel bad about it, because it isn’t explained that unfortunately cancer doesn’t come on its own. It comes with a great big package of mental health. 

And like, that’s for me, something that is still not talked about enough. 

Okay, I completely agree. I used to think it was just us in our clinics, because I used to feel that we were just giving a tablet, and then patting people on their back and then saying, there, there, you’ve got your tablet, you’ve got your scan, and it really upset me actually. Because I thought there is everything and for the patient’s relatives and carers… they are also able to have and should have access to support. Because. yes. 

Cancer is systemic issue, it’s not just a condition that affects one individual. It affects everyone. And at times also affects those professionals that work with people with cancer. Because we are human beings at the end of the day. 

Sharmistha, what is your take on this within your clinical practice? 

With your physiotherapist, occupational therapist, dietician, speech and language therapist. They’re our basic A, B, C, D. And now we’re working with them, and we’ve just managed to get also a psychologist in with our clinics. And I think they should be embedded in there, available to see our patients regularly, so they don’t just have those five sessions. 

It is changing. I think it’s only changing now because we are now realising that things… we have the need, there’s an unmet need there. And I can even see in the, this post of our psychologist being in clinic with us, is relatively new. 

But it has been with a lot of work, and if you’re with the NHS, you have to have a business case, blah blah blah. But it’s working, so I think that will come. But I think we’ve acknowledged it, and then we move forward because it’s something that we need to improve on and work with. 

The problem is that the savings that the psychologist makes to the NHS are not that obvious, as other parts, other professions, for example compliance. We enhance compliance by reducing anxieties, and very often it’s very difficult to quantify that. 

And go back to the commissioner and say look, we’re actually saving an awful lot of money because we get people through their treatment without delays, without breaching. So, it’s very important for people like yourself to raise the obstacles towards a more integrated, holistic department. Because I think everyone should know that if they need, they can have access to psychological team. 

The most resilient individual may crack down the line. Or the most fragile person may become a champion for other people. But we do not know when an individual may need the support. And that’s why it needs to be available there. 

Daria what psychological services are available and how can a patient better advocate for themselves? 

Some areas completely over rely on general practices for general counselling. And that is something that we know affects individuals’ ability to advocate for themselves. If nothing is out there, what’s the point to even try. 

Yes, that’s something that we’ve found amongst our members, is the disparity of additional services, as we would call them. And so, the charity now employs a coach, a life coach. 

And it is around living in the moment, taking control. They are a trained coach, they are not a trained counsellor, and so we don’t offer a counselling service. But we do say, well we have this coach. She works part time for Cancer Support UK, so she’s fully qualified. 

People have found that useful as well in accessing her, and spend some time with her, over several                    weeks. We hear people come back going “Oh God that was the best thing I ever did”. And that’s fantastic, because otherwise it can be really difficult for patients to access services.

I’d like to say thank you to Sharmistha, Debra, and Daria for sharing their insights about accessing emotional support for those affected by ALK-positive non-small cell lung cancer. 

Thank you very much for having us 

Thank you 

Thank you