Small cell lung cancer and mental health: experiences reported by Europeans impacted by the disease
Small cell lung cancer is one of the most aggressive forms of the disease, and one of the least discussed. These findings set out how 140 people across Europe living with SCLC or caring for someone with it described the emotional weight of the diagnosis, and the support they did and did not receive.
Published March 2026 | Cohort Small cell lung cancer | Respondents 140 | Source 11th Lung Cancer Europe Report
What this is
This article presents the small cell lung cancer (SCLC) findings drawn from the 11th Lung Cancer Europe Report, Lung cancer and mental health: experiences reported by Europeans impacted by lung cancer. The full report covers all forms of lung cancer. The figures here describe the SCLC cohort specifically, and compare it against the average across every survey participant.
The survey was completed online by people impacted by lung cancer across the WHO European Region. It was confidential and asked no personal identifying questions. It ran from 28 May to 6 July 2025. Of 2,204 responses from the region, 140 came from people impacted by SCLC, which is 6.4% of the total. Throughout, SCLC figures are set against the average of all respondents so the differences are visible.
What the SCLC findings show
The headline numbers, in brief:
66.2% of people impacted by SCLC reported a negative effect on their mental health, higher than the 61.2% average across all respondents.
92.1% struggled emotionally with at least one aspect of their experience.
72.7% feared that treatment may not work, or that the cancer may progress, the most commonly reported emotional difficulty.
51.4% did not feel well equipped to manage the emotional impact of lung cancer, against a 44.5% average.
59% were offered no form of mental health support as part of their care pathway.
46% had emotional difficulties but did not report them to their healthcare team.
42.9% felt their healthcare team had not given them appropriate emotional support.
74.3% were given no information about patient organisations or non-profit organisations by their healthcare providers.
Who took part
The SCLC cohort was made up of people diagnosed with the disease and those caring for someone with it, with women strongly represented and a spread across age, stage and country.
76 (54.3%) People diagnosed with SCLC
64 (45.7%) Caregivers
111 (79.3%) Women
29 (20.7%) Men
41 (29.3%) Aged 65 to 74
34 (24.3%) Aged 55 to 64
67 (47.9%) Stage IV at the time of the survey
46 (32.9%) Stage I to II
52 (37.1%) Diagnosed 1 to 3 years ago
46 (32.9%) Diagnosed less than a year ago
25 (17.9%) Greece, the largest country group
15 (10.7%) The Netherlands, with a further 15 from Ukraine
On biomarkers, 45.3% said they did not know whether their tumour was positive for any biomarker, and a further 24.5% said their tumour had not been tested.
The emotional toll of the diagnosis
Asked to rate the effect of lung cancer on their mental health from 1, very negative, to 10, very positive, two thirds of people impacted by SCLC placed themselves in the negative half of the scale. The cohort sat lower than the average across all respondents.
Taken together, 66.2% of the SCLC cohort rated the effect between 1 and 5, compared with 61.2% across all respondents.
“Sense of hopelessness. I’m so close to my dad and getting married next year.”
Living with fear and uncertainty
Fear and sadness were the emotions named most often. The most common fear was that treatment may not work, or that the cancer may progress, reported by 72.7%. Sadness about the effect on loved ones followed, reported by 48.9%. Fear of death and fear of side effects or complications also ranked among the four most cited emotional difficulties for the cohort.
The difficulty was rarely confined to a single feeling. An overwhelming 92.1% of people impacted by SCLC said they struggled emotionally with at least one aspect of their experience. Among them, 60.4% cited the difficulty of coping with a life-threatening disease, and 48.2% the difficulty of coping with uncertainty about their situation.
Nine in ten experienced emotional difficulties that affected their daily lives, close to the 89.3% average across all respondents.
“Fear of losing my son, family and friends, and learning how to cope with it.”
Sadness, anxiety and sleep
The findings point to a high level of emotional vulnerability. Since diagnosis, 45.6% of the SCLC cohort had felt extremely sad, 29.8% had felt trapped, and 21.1% had experienced persistent feelings of hopelessness or worthlessness. Around 13% reported a significant loss of interest in life.
Many were under strain at the time of the survey itself. More than four in ten, 41.1%, frequently felt nervous, anxious or on edge, and 36% reported significant difficulties sleeping.
The wider effect on daily life
People were asked how far their mental health, rather than the cancer itself, had affected different parts of their lives. Social life and lifestyle were the areas most affected, with 56.4% reporting a high impact. Family life came next, with 52.2% reporting a high impact.
“The worst part of it was not being able to plan for a future.”
Feeling equipped, and what helped
Just over half of the cohort, 51.4%, did not feel well equipped to manage the emotional impact of lung cancer, a higher proportion than the 44.5% average. When people did find ways to cope, support from those close to them and everyday routines came through most.
What helped maintain good mental health after diagnosis (SCLC cohort n=117, all respondents n=2,188):
Support from friends or family: 39.3% among the SCLC cohort, 45.5% across all respondents
A healthy lifestyle, such as exercise and diet: 35.9% among the SCLC cohort, 49.4% across all respondents
Being more involved in treatment and care: 32.5% among the SCLC cohort, 30.2% across all respondents
Time for leisure and hobbies: 27.4% among the SCLC cohort, 36.0% across all respondents
Self-compassion and acceptance: 19.7% among the SCLC cohort, 22.0% across all respondents
Peer support: 18.8% among the SCLC cohort, 35.0% across all respondents
Religion or spirituality: 18.8% among the SCLC cohort, 16.4% across all respondents
Changing something harmful to their wellbeing: 14.5% among the SCLC cohort, 13.1% across all respondents
Work or volunteering: 13.7% among the SCLC cohort, 19.6% across all respondents
Therapy or counselling: 12.8% among the SCLC cohort, 22.7% across all respondents
Meditation, yoga or mindfulness: 8.6% among the SCLC cohort, 16.9% across all respondents
The SCLC cohort drew on peer support, therapy and counselling, and mindfulness practices markedly less often than respondents overall.
Talking about it, and having someone there
Support from loved ones came through strongly as something that helped, yet a sizeable group did not usually share how they were feeling. Around one in three expressed their feelings only sometimes, and a further fifth rarely or never did.
How often people expressed their feelings to those around them (SCLC cohort n=139, all respondents n=2,197):
Always: 11.5% among the SCLC cohort, 12.8% across all respondents
Often: 26.3% among the SCLC cohort, 31.7% across all respondents
Sometimes: 37.8% among the SCLC cohort, 33.8% across all respondents
Rarely: 20.9% among the SCLC cohort, 20.1% across all respondents
Never: 2.2% among the SCLC cohort, 2.9% across all respondents
Having someone to turn to was not a given. Only half of the cohort, 50.4%, said they always had someone to help them when they needed it most.
Having someone to help when needed most (SCLC cohort n=117, all respondents n=1,998):
Yes, always: 50.4% among the SCLC cohort, 58.9% across all respondents
Yes, but only sometimes: 27.4% among the SCLC cohort, 20.3% across all respondents
I have someone, but I do not always ask for help: 13.7% among the SCLC cohort, 11.1% across all respondents
No, I do not have anyone to help me: 4.3% among the SCLC cohort, 5.1% across all respondents
I prefer to handle problems on my own: 4.3% among the SCLC cohort, 4.7% across all respondents
“The most beautiful support came from family, friends, and especially my oncologist and their team.”
Gaps in support from the health system
Given how widely mental health was affected, the level of support offered was low. Across the care pathway, 59% of the SCLC cohort were offered no form of mental health support at all, counting both those who answered no and those who had to seek support out themselves.
Mental health support offered as part of the care pathway (SCLC cohort n=139, all respondents n=2,193):
Yes, at the time of diagnosis: 26.6% among the SCLC cohort, 28.7% across all respondents
Yes, while receiving treatment: 21.6% among the SCLC cohort, 27.8% across all respondents
Yes, after treatment: 7.9% among the SCLC cohort, 7.1% across all respondents
No, but I sought this out myself: 15.1% among the SCLC cohort, 19.3% across all respondents
No: 43.9% among the SCLC cohort, 31.2% across all respondents
The gap was not only on the side of provision. Among the cohort, 46% acknowledged that they had experienced emotional difficulties but had not reported them to their healthcare team. And when support was given, many felt it fell short: 42.9% said their healthcare team had not given them appropriate emotional support.
Whether the healthcare team gave appropriate emotional support (SCLC cohort n=117, all respondents n=1,988):
Yes, completely: 27.7% among the SCLC cohort, 24.0% across all respondents
Yes, but only to some extent: 22.7% among the SCLC cohort, 30.0% across all respondents
No, but I would like support: 11.8% among the SCLC cohort, 10.4% across all respondents
No, I had to find support myself: 20.2% among the SCLC cohort, 21.1% across all respondents
No, but this is not necessary: 10.9% among the SCLC cohort, 9.9% across all respondents
Do not know or not sure: 6.7% among the SCLC cohort, 4.6% across all respondents
People were also rarely pointed towards organisations that could help. A total of 74.3% reported receiving no information about patient organisations or non-profit organisations from their healthcare providers, and only 14.3% were told about them at the time of diagnosis.
“Psychological support at the hospital is limited. External services provide most of the help.”
Reluctance to seek help
A majority of the cohort were often reluctant to seek professional mental health care. Only 40.2% said they had always been open to it. The two reasons given most often were a preference for handling things on their own, cited by 23.1%, and not perceiving a strong need for support, cited by 20.5%.
What people said would help
Asked which measures could improve their mental health, the cohort pointed most to information and practical support. More information about the disease, treatment and care options was the most common unmet need, named by 50.9%. Support to manage side effects and better communication with healthcare professionals followed, each named by 44.9%. Around a third, 32.2%, wanted improved access to mental health services.
“Close relatives should be better included in the care process. Only on the palliative ward was I asked, ‘How are you?’”