Melanie De Coster, Lung Cancer Europe

Welcome to Lung Cancer Europe.  We are  joined by Emma Britton, who lives in the UK and was diagnosed with stage 4 ALK-positive lung cancer in April 2025. Emma is a celebrant and radio host, which gives her a unique ability to share her journey with us.

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And we have Valeria Sebri, who is a psychologist and psychotherapist specialising in psycho-oncology. Thank you for being here.

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Emma Britton:

My stage 4 incurable cancer diagnosis is like a suitcase. A big, heavy, old-fashioned, awkward suitcase. Not one of those fancy lightweight modern wheelie ones.

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I have to carry this big suitcase with me everywhere, 24 hours a day. When I wake up, it is lying heavy on my chest.

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Some days it is lighter and I can carry it. Other days it is so unbearably heavy that I cannot lift it, and I have to move it by kicking it slowly along the floor.

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Some days other people take some of the weight for me, especially my amazing husband, John. But most days it is mine.

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Occasionally the suitcase bursts open and everything spills out in an embarrassing, angry or emotional way, so I shove it all back in as quickly as I can. Thankfully, that usually happens in private.

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When I get good news about my cancer, the suitcase gets a bit lighter. When I get bad news, it gets even heavier.

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But the hardest thing is that my really heavy suitcase is invisible to everyone else. They do not see it. They do not see the burden of the weight. They see me looking well, going to work, and leading what looks like a fairly normal life.

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So if I ever tell you that my suitcase is too heavy, you will know that is me asking for help.

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A cancer diagnosis changes your life. An incurable cancer diagnosis brings your mortality to the front of your mind every day. How long will I live? Will I suffer? What will the time between now and then be like? What will the end of my life be like?

There are so many things that affect all of our mental health in everyday life. If you add cancer into the mix, that carefully arranged pile of things starts to wobble and, in many cases, crashes to the floor.

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Here are some of the hardest things about living with lung cancer when it comes to my mental health.

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First, the word “lung”. Every time I say out loud that I have lung cancer, I immediately follow it with, “But I’ve never smoked.” The stigma around lung cancer is real. Even when it goes unspoken, there is shame and pity, and that adds to the burden.

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Then there is the medical side. The sheer number of appointments, tests, scans, follow-ups, calls and reviews, on top of work and life, puts extra strain on your ability to manage everyday life.

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Being a patient, I sometimes feel like a number. I realised early on that when I went for a CT scan, they did not care that I had cancer, or probably even know why I was there. It is not their fault. They see hundreds of people every week. But the gradual realisation that I was just a number added to the sadness.

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Advocacy is another part of it. It has become clear to me that I have to advocate for myself, otherwise things get missed. Appointments do not get made. Regular tests do not get booked. That brings extra stress.

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Then finances. Cancer adds stress when it comes to money. Are you able to work? There is the cost of travel to appointments, time off work, even hospital parking. It all adds up. As a self-employed person, I do not get sick pay. If I do not work, I do not get paid. More worry, more strain.

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Then there is the fear. Every ache, every pain, every twinge, every symptom makes you fear that the cancer has grown, spread, taken over.

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And then there is family and friends. One of the biggest things weighing on me, as I try to live and work with cancer, is the impact my diagnosis is having on the people around me, and, if I may be frank, the impact my death will one day have on those I love. I worry about that a lot. I carry it with me all the time. It weighs heavy.

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On the day I was diagnosed with stage 4 incurable metastatic lung cancer, I was given a badly photocopied piece of A4 paper. It was a tick-box sheet designed to assess my holistic needs. I had literally just been told my life was limited, and this piece of paper was asking if I needed help doing the washing or weeding the garden.

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Yes, I did go on to receive some very good counselling through my NHS hospital in the UK, but I had to self-refer, and it was only eight sessions. Now I have to wait three months before I can refer myself again and see if they have any space.

I need ongoing support, not one-off support. This journey is a huge rollercoaster, and the ride lasts much longer than eight weeks.

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From my experience, I feel very strongly, and I believe research would support this too, that if someone with cancer receives the right emotional and psychological support, they are in a better place to process their diagnosis, manage their treatment and live with their prognosis.

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They may be more open, mentally stronger, more willing to learn about their cancer, and more able to take part in research and clinical trials.

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I am so grateful to the medical profession across the world, and especially to those working in cancer research, so that one day we may live with, rather than die from, lung cancer.

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I am grateful that Lung Cancer Europe places such strong focus on care, and that like-minded people come together in this way to make changes for people living with lung cancer like me.

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So my wish list as someone living with lung cancer is this. First, quicker scan results. The wait and the uncertainty are crippling. Second, continuity of care. I do not currently have that. Third, organised, planned, routine psychological support.

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It is very hard living scan to scan, trying to live well in between, because you do not know when the cancer will win. Cancer is clever, cruel and unpredictable. But it has also made me appreciate every person I love even more.

And on the days when the light of hope shines brighter than the darkness of cancer, I am living as best I can. And that is all I can do. Thank you.

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Melanie De Coster:

Thank you so much, Emma, for that beautiful and moving story.  What tends to trigger stress or worry most throughout your journey?

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Emma Britton:

It is the anxiety of the cancer spreading. I do not know if it is the same for everyone, but I am ALK-positive and I have a CT scan every three months and a brain scan every six months. That is the gold standard in the UK, and I am very fortunate to get that, because I know not everyone does.

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My first three-month scan results were brilliant. I had a good response to treatment. My six-month scan results were more uncertain. They said there were a couple of small areas they did not like, so they brought my brain scan forward by four weeks.

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Then I started to feel unwell. I reported it, I was scanned early, and my cancer had already progressed. I progressed at seven and a half months on my first-line targeted therapy, alectinib. I was then switched to second-line treatment, lorlatinib, and I have been on that for nine weeks.

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I will be scanned again in three or four weeks, but then I will have to wait another two weeks for the results.

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So you live life scan to scan to scan. And it is not only about your health. Do you make plans? Do you say yes to that invitation? Do you book that holiday? Do you buy that new car? I got a new car last week. Three months ago, I was not going to, because I thought, what is the point?

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It is that day-to-day, scan-to-scan way of living that I find hardest.

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Melanie De Coster:

Thank you. Valeria, what are the most common emotional and psychological reactions you see after a lung cancer diagnosis?

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Valeria Sebri:

As Emma expressed so well, anxiety is one of the first emotional issues people face. Anxiety is tied to uncertainty about the future, about plans, but also about identity. You knew yourself as one person, and now you are becoming a patient. That can feel deeply unsettling.

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There can also be depression, although I do not like to reduce depression to simply low energy or an inability to cope. It is also about identity and about questioning what the future may hold.

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Emma Britton:

You grieve for the life you had. It is strange. It is like, one day I was that person, and the next day I was not. It feels like grief.

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Valeria Sebri:

Exactly. That is such an important point. In psycho-oncology, we work from the understanding that you are a person first. You are not only a patient.

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You are also someone with values, needs and preferences, including preferences about treatment. Sometimes people do not fully realise that they can express their emotions and preferences to healthcare professionals and to their families.

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You can say, this treatment option matters, but I also want to understand what the alternatives are. That gives people a more active role in their care and helps them remain grounded in who they are.

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Melanie De Coster:

Emma, you spoke about uncertainty. How do you cope with it? And when did you decide to buy the car?

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Emma Britton:

I get a new car every three years. That is just what I do. So when I got one last week, I felt I almost had to explain to people that I had not suddenly gone out and bought a car just because I have cancer.

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Someone said to me, it is easy to think the next bad result is around the corner, but the next good result might be around the corner too.

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So I try to go ahead with life as normally as possible. But in the first few months after diagnosis, we could not do that at all. We were in complete shock.

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Now we try to be normal and maybe plan a bit more short term. Some fellow ALK-positive people I know only book their holiday after they get scan results. Others are more willing to take the chance.

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So you try to be normal, but inside you are still screaming, do not forget I have still got cancer. Do not forget I have still got that suitcase. It is a very hard balance.

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Melanie De Coster:

Do these emotions change over time?

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Valeria Sebri:

Yes, very much. Anxiety can rise and fall over time. It may increase at diagnosis, but it also depends on the type and stage of cancer, and on treatment side effects.

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Side effects can have a major effect on wellbeing and quality of life, but too often we do not give them enough attention. There can also be emotional difficulties during recurrence, or even during survivorship, because life has changed in a lasting way.

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So yes, emotions fluctuate continuously, and that is closely tied to learning how to live a new life.

Melanie De Coster:

Emma, have interactions with healthcare professionals affected your emotional wellbeing?

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Emma Britton:

Yes. I am very much a people person, so I connect strongly with people. I mentioned earlier that I do not have continuity of care. I have had the same lung cancer nurse specialist throughout the past year, and that makes a huge difference, but I have never seen the same oncologist twice.

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None of the oncologists in the NHS trust looking after me are ALK specialists. So every time I have an oncology appointment, I feel I have to explain my cancer all over again. That is not their fault. ALK is rare. I do not expect them to see it every day.

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When I asked for my case to be reviewed by an ALK specialist, they arranged that, which I appreciated. But I had to build up the courage to ask. I did not want anyone to think I was questioning their professionalism. I was just worried, because I seemed to know more about my cancer than they did.

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My lung cancer nurse specialist makes a real difference because she is there. I also have a very good oncology pharmacist. He loves talking about drugs, interactions and side effects. When I started my second-line treatment, one possible side effect was psychosis, mania and cognitive changes. I was terrified.

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He sat down with both me and John and talked us through the data, the risks and the reality. He was fascinated by the science, and that was reassuring.

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So I can tick the drug box, and I can tick the lung cancer nurse box. But the general oncology care feels fragmented, and that is hard. I never know who I am going to see. I do think relationships with clinicians really matter.

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Melanie De Coster:

Valeria, what kind of communication helps reduce emotional distress?

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Valeria Sebri:

Clear, honest and transparent communication is essential. It gives people the chance to talk through what is happening now, what may happen next, and what they are feeling.

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Sometimes clinicians do not have enough time for these conversations, but many people really need that space. Communication has to go beyond the physical side. It should include needs, preferences and fears.

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It also matters whether the person has actually understood what they have been told. Sometimes healthcare professionals explain the illness and the treatment and think everything is clear, but the person is in shock. That may be a moment when things need to be repeated slowly and clearly, with space for questions.

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Many people say they want more time with the doctor, and often they would prefer to have one consistent point of contact. Trust is crucial. Without trust, outcomes can suffer and quality of life can fall.

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Melanie De Coster:

Emma, you mentioned the mental health support you received. Was that something you wanted straight away, or was it suggested to you?

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Emma Britton:

I have always been someone who is quite open to mental health support. After the diagnosis, once the initial shock had passed and I had become a bit physically better, I quickly realised I would need someone to talk to.

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For me, that had to be someone I did not need to protect. John and I talk very openly, but some of your deepest fears are not always things you want to say to someone who loves you.

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I heard about the hospital counselling service related to cancer, but I had to self-refer and then go through an assessment. I joked and asked whether they were trying to work out if I was upset enough to qualify.

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But the counselling I received was incredibly valuable. It was the same time, the same day, every week for eight weeks, and it really helped. When it ended, I felt left hanging. Even the counsellor felt the same, but said they were only allowed to offer eight sessions.

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I understand the pressures, but I would like ongoing support. I have already put a note in my diary to refer myself again in three months.

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Melanie De Coster:

Valeria, are there barriers that stop some people seeking mental health support?

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Valeria Sebri:

Yes. Some things are commonly reported, such as fear of the future and changes in how someone experiences their own body. People can begin to feel that their body has become a source of danger, and that can be deeply unsettling.

At the same time, each person’s experience is very personal. There are common themes, but no one else can fully know exactly what another person is feeling.

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What I often say is that perhaps we should not ask others to fully understand. Instead, we can ask them to stay close to us, to be with us, to support us without judgement. That makes a real difference.

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Melanie De Coster:

Emma, is there anything you wish your care team understood better about what you are going through?

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Emma Britton:

Personally, I wish they understood my specific type of cancer better. In an ideal world, I would be looked after by an ALK-positive specialist. Those specialists do exist in the UK, but I do not live in their area.

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I think I would feel more confident if I knew the team fully understood my treatment options and what might come next. At the moment, I worry that the approach is simply: first this drug, then this one, then chemotherapy, then the end of the line.

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Whereas I read about people with excellent oncologists who really want to understand what is driving the cancer, what the latest research says, and what other possibilities exist. That would be my dream.

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So I am trying to learn as much as I can about my own cancer and be ready to ask the right questions when the time comes.

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The last time I spoke to an oncologist, right at the end of the call, I mentioned that I was going to Copenhagen to speak at a Lung Cancer Europe event, and then to Vienna as a delegate at the Lung Cancer Europe conference. The oncologist laughed and said, “You go to more conferences than I do.”

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But I thought it did not hurt for them to know I was going to advocate for myself. I am not trying to catch anyone out. I have one life, and I want to take every chance I can.

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Melanie De Coster:

Valeria, how can oncologists create a psychologically safe environment during consultations?

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Valeria Sebri:

The setting matters a great deal. People need to feel they are in a safe and private space where they can speak openly.

Even simple things can make a difference. Sometimes a desk between the clinician and the person can create a sense of distance. It is not literally about the table itself, but about what it symbolises.

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Eye contact also matters, as does active listening. The environment is not only about the room. It is also about the relationship. It means showing that you truly want to listen to the person’s emotions and experience.

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And that setting will not be the same for everyone. Some people need more closeness, some need more time, some need to see the clinician’s face and emotional response more clearly. The relationship should adapt to the person.

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Melanie De Coster:

One last question for both of you. If you could each change one thing to improve emotional wellbeing for people living with lung cancer, what would it be?

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Emma Britton:

I would make psychological support routine. Not something people have to ask for in desperation, or something they only find by chance through brilliant charities or support groups.

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When they hand you that box of pills that may give you more time, they should also hand you an appointment to talk to a professional. You should not have to fight for that.

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Valeria Sebri:

For me, it is about care, not only cure. There is a big difference.

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Healthcare systems often focus only on cure, on giving the best treatment possible. Of course that matters. But care is also a goal. Care includes quality of life, psychological wellbeing and physical wellbeing. We need to support care, not only cure.

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Melanie De Coster:

Thank you both for your time, and for sharing your experience and expertise.