THIS IS NOT A STORY OF BLAME. IT IS ABOUT HOW WE NORMALISE AND DISMISS SYMPTOMS THAT ARE BORING OR MANAGEABLE TO US AS INDIVIDUALS AND THAT QUIETLY TURN DEADLY WHEN NOBODY JOINS THE DOTS.
February is Oesophageal Cancer Awareness Month in the UK and I’m writing this article because Oesophageal Cancer is still being diagnosed far too late in individuals who have had symptoms for many years and were told or found out to live with them.
I WAS ONE OF THEM
SYMPTOMS PEOPLE DON’T PANIC ABOUT
My symptoms didn’t present themselves dramatically; there was no collapse, no blood, no ambulance.
I had heartburn.
I had nighttime reflux.
I had a burning sensation in my throat.
I occasionally experienced a pain in my chest after eating.
I felt like food was getting stuck, a little.
These symptoms annoyed me, but they weren’t alarming to me.
The type of symptoms that fit easily into our busy modern lives.
Stress. Diet. Coffee. Alcohol. Work.
I was prescribed proton-pump inhibitors (PPI’s).
PPI’s helped some.
I was assured.
However, I was not informed that chronic reflux isn’t neutral; that repeated acid exposure can cause a change in the lining of your oesophagus; that a condition called Barrett’s oesophagus exists; and that having Barrett’s oesophagus may increase your risk of developing cancer.
– I didn’t know what Barrett’s was.
– Nobody suggested an endoscopy early on.
– Nobody explained that reflux lasting years is not something to simply suppress and move on from.
So, I moved on…
UNTIL I COULDN’T.
WHEN THE STORY FINALLY GETS NAMED
By the time I was diagnosed, the language had changed rapidly.
“Stage IV.”
“Inoperable.”
“Incurable.”
This rapidity of language is one of the most wicked aspects of oesophageal cancer.
Years of vague symptoms, followed by a diagnosis that arrives fully formed and already advanced.
OESOPHAGEAL CANCER IS NOT RARE.
IT IS SILENT.
More than 9,000 people are diagnosed with oesophageal cancer annually in the UK.
Poor five-year survival rates exist primarily due to late diagnoses.
Early detection greatly improves prognosis, however, the window to detect cancer is typically missed.
NOT BECAUSE PEOPLE DISREGARD THEIR HEALTH. BUT BECAUSE THEY WERE NEVER TOLD WHAT THEIR SYMPTOMS COULD MEAN.
WHY OESOPHAGEAL CANCER IS STILL BEING MISSED
There are numerous factors that contribute to this cancer slipping through the cracks.
1. Symptoms of oesophageal cancer are common “lifestyle issues”
Heartburn and reflux are both very common.
Common enough that they are frequently treated as a lifestyle inconvenience rather than as a clinical indicator.
When symptoms are common, they are simple to dismiss.
2. Medications mask the progression of disease
While medications can provide relief from symptoms (e.g., acid-suppressing medications) underlying tissue damage will continue to occur.
Symptoms will resolve.
Risk will not necessarily diminish.
This can lead to a false sense of security.
3. Under-discussion of Barrett’s oesophagus
Barrett’s oesophagus is not cancer, but it is important.
It is identifiable.
It is surveillable.
Surveillance can save lives.
Numerous individuals with long-term reflux are never informed that Barrett’s oesophagus is possible, or what it may mean.
4. Diagnostic thresholds are too high
Dysphagia, unexplained weight loss or chronic abdominal pain typically prompt urgent investigation.
However, waiting until these signs develop results in waiting too long.
Awareness should lower diagnostic thresholds, not raise them.
WHAT AWARENESS SHOULD ACTUALLY MEAN
Awareness is not a ribbon.
It is not a slogan.
It is not a month that passes quietly without making any changes.
For oesophageal cancer, awareness should result in:
– Awareness of the fact that long term reflux is not benign.
– Knowledge of what Barrett’s oesophagus is and which individuals should undergo assessment.
– Recognition of dysphagia as a red flag symptom (not as a nuisance).
– Patients empowered to request a referral, not wait for permission to do so.
Charities that focus on the specific gap between public education and the need for early recognition and intervention in oesophageal cancer will be essential in making this happen.
One organisation that is worthy of greater publicity is Heartburn Cancer UK.
Their focus is directly on this same gap – providing education regarding long-term heartburn/acid reflux, Barrett’s oesophagus, oesophageal cancer, and pushing for earlier identification and evaluation of patients with chronic heartburn/reflux.
If you or a loved one has had long term reflux, the information provided by Heartburn Cancer UK is truly life-saving.
You can access their website here:
https://heartburncanceruk.org
LIVING WITH THE CONSEQUENCES OF LATE DETECTION
After receiving a late-stage diagnosis, every aspect of life becomes more difficult.
Decisions about treatment become more complicated.
Options decrease.
Emotional burden becomes massive.
I have shared publicly that I received chemotherapy and later immunotherapy.
I have also shared publicly that I utilised complementary therapies to support my chemotherapy and immunotherapy.
This was never about rejecting conventional medicine.
This was about increasing the odds in a scenario where cure was no longer possible.
Late-stage diagnosis forces people into survival mode.
Early-stage detection provides individuals with choices.
That difference makes more difference than any argument about treatment philosophies.
THINGS I WISH I’D KNOWN EARLIER
If I could go back in time, the following are things I would want in front of me, not as fear, but as knowledge.
– Long-term heartburn is deserving of investigation, not continued suppression
– Barrett’s oesophagus is not rare and it is not harmless
– Difficulty swallowing (even sporadically), is not something to ‘wait and see’
– It is okay to escalate your concerns regardless of whether you are able to function
– The decision to undergo an endoscopy is not overreaction if your symptoms persist
Awareness is not about freaking out everyone who experiences reflux.
Awareness is about stopping the silent normalisation of risk.
A NOTE ON THE FUTURE
Along with Jane McLelland, I am working on a new charity that is not limited to oesophageal cancer, but is heavily influenced by experiences such as my own.
Our charity is focused on empowering patients, promoting integrated thinking and ensuring people do not have to navigate complex illnesses alone.
We are taking the time to build it properly, responsibly and carefully, and we plan to launch it later this year.
February is currently Oesophageal Cancer Awareness Month.
And if awareness is going to amount to anything, it needs to transition into earlier action.
THE TIME THEY SHOULD HAVE HAD
There is no way to make awareness abstract; awareness has to be made up of real people who are being affected by the time an illness steals. Awareness can’t exist just in stats, campaigns, and nice sounding slogans; it has to exist in the people and the time that illness steals.
I couldn’t write this without thinking about certain people: Roger. Kirsty. Dan. Stephen. People I came to know (and although I knew some of them personally, I didn’t meet others at all), because of our shared, devastating diagnosis of oesophageal cancer. All were courageous; and all were different – in age, in their path to developing the disease, in the type of jobs they worked at etc., but none of them are alive today and I carry each of them with me as I write this.
I attended Kirsty’s funeral a week ago and she has been on my mind since then. She was from the same school as me, a couple of years ahead of me, and there were uncomfortable similarities in our experiences – a demanding job in finance, symptoms dismissed and explained as related to lifestyle rather than due to possible underlying issues, reassured when curiosity may have resulted in different outcomes. She leaves behind a family, friends, colleagues, and a community that loves her dearly. The funeral service was one of the most crowded funerals I’ve attended in recent years. A young woman who has lived a very full life has died far too soon and is gone.
Kirsty and I became friends after her best friend Georgina shared my story with her. Since which, for the past year, we talked almost every day – about our scans, the uncertainty of our diagnoses, our fears, our hopes, our black humour, and the odd feeling of being close to another person when you’re both walking through the same tight space. She was always kind, and quiet in the face of great challenges and was always willing to give her time to help others. I truly believe the world will miss her presence.
I wish her parents and friends had more time. I wish the same for Roger, for Dan, for Stephen, and for the many other families whose stories will not be told. That is why this month matters.
Oesophageal cancer is still a disease that quietly takes time before anyone realises what is going on. Early recognition, early investigation, and a refusal to normalise long-standing symptoms are not just ideals; they are the key to giving many more people the time they deserve.
IF YOU TAKE ANYTHING FROM THIS
If you have had long-term reflux, ask questions.
If you have been told to live with symptoms that are changing, push back.
If someone you love constantly mentions food getting stuck, pain after eating, or nighttime reflux, encourage them to get checked.
Oesophageal cancer does not shout loud.
It waits for silence.
Awareness Month is about breaking that silence – not with fear, but with facts, tenacity, and earlier care.
Subscribe to stay connected
