Patient blogs.
Mel (right) with partner Sarah
Living, truly living, with lung cancer
Sunny with a chance of rain; cloudy with a chance of exquisite luminosity; the latest drug treatment; the beautiful business of living
By Mel Erwin, living with stage 4 EGFR lung cancer
Understandably, friends and family stumble over the meaning and implications of stage 4 cancer. As did I. As do I still. Some wonder if I am about to pop my clogs. The words ‘terminal’ and ‘incurable’ buzz in the background. And yet, all human life is terminal, finite. We are all in the queue; none of us escape. Unspeakable tragedies happen within and outside the cancer community. The only certainty? One day, we will cease to be.
Stage 4 (or advanced) EGFR+ lung cancer is incurable but treatable. A manageable, chronic disease; not necessarily an immediate death sentence. Cancer cells can travel from the lung to the brain, bones or liver where they form new tumours. My original cancer was in my left lung. The cancer cells got curious; migrated to the other lung, liked what they saw and decided to set up camp there too. A constellation of ten little tumours, twinkling in their new galaxy.
What is EGFR, I hear you ask? On diagnosis in 2020, sick, shocked, terrified, I found it impossible to hold onto even the order of the letters, let alone their significance. Scientific(ish) interlude: it stands for epidermal growth factor receptor. EGFR is a protein involved in the growth of lovely, healthy cells. For people with EGFR+ lung cancer there is a mutation to the gene coding for this protein which means it is significantly over expressed. Cells grow out of control and lead to cancer.
Recent medical progress gives EGFR+ patients the possibility of many more years of beautiful life than was available even four years ago. How grateful we are for research and clinical trials. A new drug, Osimertinib (Tagrisso), prolongs life by inhibiting or shrinking tumour growth, sometimes to the point of ‘no evidence of disease’. How we love this phrase. Some are on this drug for two, five, even seven years. I have been on it for six days.
Although we face a potential host of delightful side-effects including diarrhoea, skin rashes, sore and peeling nails and other nasties, we are the official Osi Fan Club. Amidst the cancer chaos, we have a drug to hold onto. To keep us afloat until the next unexpected tidal wave hits and we slap hard onto the shore. And how we grip.
The drug is not a cure. At some stage the cancer cells wise up, mutate, mount a campaign to rebel, to resist the work of the drug. Osimertinib becomes ineffective. Fortunately, advances in cancer treatment mean new alternative drugs and treatments may be available to us when it does.
Which is glorious news as we EGFRers plan on living a long time.
The vital-to-us charity EGFR Positive UK offers a private social media community for patients. We are over 800, welcoming new fellows weekly. Newly diagnosed patients, some with a recurrence, sometimes loved ones and carers. Often terrified, bewildered. The freshly shocked and tangled are welcomed in our virtual home; we budge up and create space on the sofa. Some sit by the fire to chat, others sit in a quiet spot to listen and this is okay. All are welcome to this club that nobody wished to join. We offer gentle, compassionate words and share painfully earned knowledge. Each person’s experience is personal, our biologies are different. We listen. We share insight and advice; we talk about side-effects. We know, you see.
We advocate in the medical world for ourselves and each other. After all, nobody wants to be a passenger in their own life; we want to make informed decisions about our care.
Equally, we celebrate the beauty of life, the heaven of the humdrum. We have gained somehow a magic gift of spotting that which nourishes, lights us up. We are rewired for the sublime. People write about a precious afternoon swimming in a lake, the joy of the first holiday since chemotherapy, a cheeky beer, a walk in Yorkshire, a longed-for camper van trip, the birth of a grandchild. A burst of colour, an unexpected peak at nature, a smile, a kindness observed or received, a beam of love; our superpower is to see this acutely, with remarkable clarity. To see only the now, the here, this day.
But we are not always Mary Poppins. Most days, someone releases their agony as a dark mist descends. Living with uncertainty is wearisome, agonising work. The terror of an upcoming scan result perhaps. What we, in the business of living, call scanxiety. Is the drug working? Will the tumour have sneakily grown? Have I developed metastatic disease? Am I literally riddled with cancer? Will I live to carry on loving?
Just as we wobbled in yoga poses, so we wobble from acceptance and joy to fear and panic. It is an exhausting balancing act.
Too many in our community are diagnosed at stage 4. Often women who have never smoked. They present at the doctor’s with perhaps sciatic pain or ongoing shoulder discomfort. Not for them, a persistent cough or chest infection. And since they have no history of smoking, lung cancer is perhaps not considered. They are not sent for an x-ray of the lungs. And by the time they are, the cancer has progressed. We help raise awareness of the range of lung cancer symptoms; the importance of lung cancer screening. An early diagnosis can make a big difference.
Sometimes, we lose people. People who were perhaps last week posting a glorious photo with smiling offspring in a garden full of wisteria, of roses. A sombre, painful reminder of the enormous implications of our disease. Cloudy with a chance of rain. Suddenly, we are chilly and gather closer. We are still. We are quiet. We wave a solemn, loving goodbye. Too soon, too soon.
Connection and kindness; how it helps us. The everydayness of life is precious. That is enough. Do not be afraid to ask us about cancer. We will listen.
About lung cancer in the United Kingdom
Lung cancer can affect any of us. Even those who have never smoked.
In 2022, 36,886 people were diagnosed with lung cancer.
Around 7000 are diagnosed with EGFR+ lung cancer each year.
Results from a 2024 survey by the charity EGFR+ UK:
50% of those surveyed were under 60 at diagnosis
75% of patients are female
75% are diagnosed at stage 4
68% identify as ‘never smokers’.
Oncogene-driven lung cancers - like ALK, EGFR, RET, ROS1, KRAS and others are often diagnosed in younger people who may have no detectable risk factors.
Originally published on Mel’s Lovely Lungs personal blog. Follow Mel here.