By Kate Quirk, Lisa Webb & Melanie Lucas
(Stage 4 Lung Neuroendocrine Cancer patients)
(This article was originally written for Thorax Journal)
In cancer care, good communication is not simply about delivering information. It’s part of the treatment.
It’s about how that information is shared – about empathy and honesty – about trust and shared-decision making – about whether the patient feels emotionally held and genuinely listened to.
As three patients who took part in the first Broncho-Pulmonary Education Event for HCPs in Manchester earlier this year, we wanted to contribute to learning that could shape future clinical practice. We have educated ourselves after receiving cancer care that was often well-intentioned, yet wide of the mark — care that failed to convey both the seriousness of the diagnosis and the compassion required to understand what patients truly need, whether newly diagnosed or living (as many now do) with cancer long-term.
Lisa’s experience:
Before Lisa’s Atypical Carcinoid (AC) / lung neuroendocrine cancer diagnosis, she had spent more than a decade being unheard. She is not a ‘frequent-flyer’ at her GP Surgery and would be the last to misuse NHS resources. Yet a genuine health condition was repeatedly missed. Her symptoms were misinterpreted and dismissed, and over time she learned to distrust her own body’s signals. By the time she entered the cancer world, she did so already uncertain, doubting herself.
When her diagnosis finally came, the shock was profound.
Lisa has a PhD and is accustomed to processing complex information. But cancer is not simply a matter of understanding information. The shock of diagnosis changes how information is received, remembered and processed.
Told she had asthma, it was not the diagnosis itself but how it was delivered that caused the greatest trauma.
In preceding weeks, she underwent multiple investigations, during which better communication could have been transformative. She was not told X-rays had revealed a concern, nor that a CT scan was to investigate cancer. A simple explanation of what the investigations were looking for could have helped prepare her for what was unfolding.
No decision about me, without me.
Melanie’s experience:
Similarly, following a misdiagnosis of lung cancer, Melanie (real diagnosis Atypical Carcinoid / lung neuroendocrine cancer) read a note by her GP Surgery in 2023 on the NHS app that her prognosis was just months. At this stage, she had no symptoms and had not had a biopsy. But to see, in black and white, how long she did not have to live was plainly life altering.
Melanie reflects:
“We know it’s a balance. You can’t assume one size fits all. Patients may want to know lots — or little. Doctors need to talk to us as people first. Make an intelligent assessment. Listen. Consider that our brains are likely to have gone into protective fight-or-flight mode. In those moments, we can’t even spell our own name, let alone ask an important question. Take account of our shock. Be patient and kind. With lung neuroendocrine cancer, we are never textbook cases.”
Lisa was later given a telephone appointment for a consultation and directions to a clinic she had never heard of. No one warned her it was a cancer clinic. She discovered on arrival, alone, when she saw the sign on the door. The realisation hit her in the waiting room. She felt frightened, unprepared, and isolated — confronted by something she had not yet been supported to process.
Good communication would have meant being gently prepared, having context explained, and being emotionally supported before entering such a space.
Pictured: Prof Was Mansoor, Melanie, Lisa, Kate with Prof Matt Evison.
Lisa and Melanie recall being told versions of:
“You have cancer… don’t worry, it’s a good type to get… highly treatable… probably benign … at a curable stage… you will lose your lung though… it’s in a bad position.”
For a patient, hearing these statements in succession can be bewildering: reassurance sitting alongside frightening and sometimes apparently contradictory information.
Then being sent home to process this alone.
Both now describe experiencing lasting trauma from these events.
A cancer diagnosis thrusts you into a world where a different language is spoken. Patients are asked to ‘trust’ and ‘believe’ and ‘have faith’ in those tasked with treating and healing us. We’re supposed to know what questions to ask, and when we do, to have faith in the answers. One of the best conversations Melanie recalls with a clinician was: “I don’t know, but let’s find you someone who does.”
Kate’s experience echoes these themes.
“Diagnosed in 2003, I was told my Typical Lung Carcinoid (TC) was benign. After a lower left lobectomy and 5 years of follow-up with just chest X-rays, I was given the all clear.”
Yet when symptoms such as flushing and fatigue returned, she again struggled to be taken seriously. Misdiagnosed with asthma and later with breast cancer, she was repeatedly told her symptoms were “just menopausal” or “stress-related”.
In 2015, after 2 breast surgeries and 20 sessions of breast radiotherapy — for a cancer she did not have — Kate asked clearly:
“Could this be related to my lung neuroendocrine cancer diagnosis?”
The quick reply: “No, that was far too long ago.”
By the time she insisted on a second opinion at The Christie Manchester, she had extensive Stage 4 lung neuroendocrine cancer. Understandably, she found it difficult to trust her new specialist team. The need for a safe, consistent environment with recognised expertise had become paramount. Years of inaccurate information and thoughtless communication had eroded trust entirely.
Kate who also holds a degree, now sits on the Research Committee for the International Neuroendocrine Cancer Alliance, and runs the Manchester Patient Support Group on behalf of Neuroendocrine Cancer UK. She has spent years researching Lung NETS, and now advocates for others with this disease. Her oncology team at The Christie worked hard to rebuild trust and develop a successful, respectful relationship.
In the months (and years) following diagnosis, all three women needed clear lines of communication — someone to contact when endless questions emerged after the initial shock. All three needed kindness and compassion just as much as medical expertise.
As Kate says: “After each of our diagnoses, nothing else occupied our thoughts for months afterwards. Cancer now sits beside us – and we continue to work hard to build lives filled with the things which truly matter to us.
We continue to need clarity of communication on what happens next and what treatment plans are being proposed – and why.”
And Melanie commented: “We need clinicians to recognise that shock profoundly affects memory and processing, and that important information needs to be repeated — calmly, patiently, and without judgement.”
Ultimately, good communication is an essential part of high-quality cancer care and can influence patients’ understanding, trust, treatment decisions and experiences of living with cancer.
We need to feel understood.
Melanie needed control over the flow of information. Kate needed to be actively involved in decision-making. Lisa needed to relearn how to trust her body.
Across all our journeys, one truth is clear said Kate: “what matters most is not only what is said, but how it is said. We’re not asking clinicians to have all the answers. We’re asking them to recognise what it feels like to be on the receiving end.”
Kindness, accuracy, compassion, and clear, honest communication are the difference between feeling powerless and feeling supported.
Note: These stories have not been selected because they are unusual or dramatic. They reflect experiences that we believe deserve greater attention, and that may be familiar to many patients living with lung neuroendocrine cancer.
These are not exceptional patients. They are the patients you will see in your clinics.