In early 2023 I started to experience what I presumed was heartburn although I had never really suffered with it previously, then swallowing bread became a problem and eventually in March a piece of bread got stuck in my throat and I had to cough it up. This alarmed me so much that I went to the GP who fortunately put me on a fast track 2 week referral for an endoscopy despite my protests as I was terrified of the procedure!
I had the endoscopy and the consultant told me right away. I will never forget his words. They asked my husband to come and sit with me so I had a suspicion it was bad news and a nurse was holding my hand. The consultant said “Its serious. What do you think it is?” Immediately I said “cancer?” and he said yes.
To say we were shocked was an understatement. I was 53 years old, fit, healthy weight, non smoker, even the nurse in the room couldn’t believe it. A few days prior we were cycling 40 miles over the Lincolnshire Wolds on our tandem and now I was being told I had cancer. My husband was a huge support to me. He has a very positive attitude and took time off work to take me to all the appointments etc.
After that I had a CT scan the next day to see if it had spread then a PET scan a couple of weeks later. It was stage three adenocarcinoma but there was no evidence of further spread to my lymph nodes so following a staging laparoscopy I underwent 4 rounds of pre operative chemotherapy. After just 2 rounds I found swallowing was easier and after I completed the course I was able to eat normally again.
I then had to prepare mentally and physically for the Oesophagectomy. I was an ideal candidate for the robotic assisted operation and I had that on September 5th 2023 at Nottingham City Hospital.
After a week in hospital I returned home and gradually was able to eat little and often. On October 2nd 2023 I was told the amazing news that no trace of cancer was found in my post operative test results, however they still recommended I had a further 4 rounds of chemo just to make sure.
The post operative chemo was really hard going and they had to reduce the dose but I persevered and got through all 4 rounds. It was probably the toughest part of the journey but at least I knew I could look forward to better days.
Things that helped me throughout the whole daunting journey were the love and support of my husband and my supportive friends from near and far, we are avid travellers and the hope of getting our lives back to doing what we love was a major part of my recovery. I also had an amazing mental health counsellor on the NHS who was invaluable in helping me try and deal with the psychological side of things.
Since then we have been on 3 cruises, many weekend breaks and have lots more travel adventures planned . I can eat out in restaurants without issue. I usually go for sharing platters or tapas . I do occasionally have IBS type symptoms but these are manageable . I feel very fortunate that I can enjoy life once more . At times I felt like I was the only woman in my 50s with this condition but thanks to organisations such as the OPA I know, sadly there are others and it helps to be able to connect with people in a similar situation.” – Lisa Hubball
Category: Patient Stories
“In December 2021 I had a phone call from an old boss who had become a long-time friend. He announced to me that he had developed oesophageal cancer. Like a lot of people when it comes to the ‘C’ word unless you are directly affected by the disease you tend to shy away from the subject or bury your head in the sand like the proverbial ostrich. I remember at the time thinking “oh my god, how do you treat that! Can you treat that?”
In May the following year I was on holiday in Greece when I received a phone call from his wife informing me of his demise. Obviously shocked and saddened I continued to recall the good times we had and memories as you do in those times.
You can imagine my absolute shock in October 2023 when I was diagnosed with the exact same thing! It was picked up on a routing annual blood test for diabetes and the only symptoms I had was feeling giddy when exerting myself, which had been ongoing for about 6 months. I put this down to dehydration and didn’t think much else of it. I subsequently had problems swallowing food but never linked the 2 things, I know different now of course. I had always suffered from heartburn to a lesser degree, but no more than what I considered fairly normal as it was easily maintained with off the shelf remedies.
Even until I was diagnosed I never thought it would turn out the way it did. I wasn’t particularly overweight, not smoked for 20 years and still reasonably active. Quite simply I never felt unwell or sick. In fact I often got comments on how well I looked, which I put down to hypertension of which I had been a subscriber for about 10 years.
On Monday the 8th April 2024 I underwent my robotic Oesophagostomy which was a daunting thought. After a few days in ICU and a couple on the ward all wires and tubes removed; off home I went to start to long process of recovery.
I would imagine everyone deals with it in their own way, being single I predominantly needed to lean on my kids and a few close friends. I have to say a half hour call with Graham really helped as well (thank you Graham). A second round of chemo followed and finally 5 weeks of radiotherapy with the ultimate outcome of beating this unwanted guest once and for all. 2024 was a challenging year.
My way of dealing with this unfortunate situation personally was and is to take it one step at a time and try not to become overwhelmed, bite sized chunks worked for me, from PICC line installation to chemotherapy to radiotherapy. There is so much information and learning to do it is easy to become swamped and that just makes the anxiety worse. Another important thing is to take someone with you to the more important meetings as you are bombarded with information. I recall a meeting in the early days where a statement was made and I completely missed it. Luckily my daughter and son were with me and they confirmed what was actually said.
They will tell you “don’t google it” which is one of the best pieces of advice offered. We all know google can be really useful sometimes, but remember there is so much commercial rubbish and nutters out there on the web and socials that it will only worry and frustrate you unnecessarily. If you need to ask a question head for McMillan’s web site or your nominated nurse, and remember no question is too trivial or silly.
Staying positive is so important for you mental wellbeing and make sure you get the support you feel you need as an individual; be that family, friends or the professionals.
Updating this 16 months later (February 2025) I completed 5 weeks of radiotherapy by the end of October and had to wait for the body to recover before having a CT scan at the end of January. I was originally told I would not get the results until the end of March due to staff shortages, but was told to check towards the end of February which I did.
On Monday 17th I got the news “no measurable disease” and after questioning what that actually meant was told there is no trace of cancer now. A bonus of the weight loss following surgery is that my type 2 diabetes and hypertension are gone as well. The new emotion is currently denial, but I am sure that will pass along with the outbursts of difficult to contain tears. I share this not to gloat but to hopefully help explain one person’s journey and what you might expect wherever on the path you are. I wish you well and send loving thoughts.
Finally a shout out for the wonderful staff of the Royal Surrey and the cancer centre that are both absolutely amazing, I don’t have words adequate enough to describe how good they are.”
Andy Eeles
February 2025
My name is James, and I’ve consistently led an active and busy lifestyle. I worked in construction for years, enjoyed the outdoors, and never thought much about my health until one day, I started having trouble swallowing. At first, it seemed like just a minor irritation—food would occasionally get stuck in my throat, and I’d experience some heartburn after meals. But soon, the problem became more persistent, and I found myself losing weight without trying. That’s when I decided to go to the doctor.
After a few tests, I was told that I had oesophageal cancer. The news hit me like a punch to the gut. I was in my mid-50s, and the last thing I ever expected was to face something so serious. I wasn’t a smoker, didn’t drink much, and had always been healthy. My doctor explained that my cancer was in the early stages.
My Diagnosis
When I first heard the diagnosis, it was hard to wrap my head around it. I kept asking myself how this could have happened to me. My family was in shock, too, but they immediately rallied around me. My wife, Katy, especially, became my rock. She made sure I had all the information I needed. She contacted the OPA Cancer Charity, and they provided tremendous support. At the time, I wasn’t sure how I’d get through it, but the support from my family and this charity kept me grounded.
My Treatment Plan
My treatment plan involved a combination of surgery and chemotherapy. The goal was to remove the tumour and ensure that any remaining cancer cells were eradicated with chemotherapy.
The surgery was scheduled first, and I was nervous about what it would entail. I knew it was my best chance for recovery, but that didn’t make it any less intimidating. The surgery went well, but the recovery afterward was tough. I was in a lot of pain, and swallowing became a huge challenge. I couldn’t eat solid food for a while and had to rely on liquid nutrition to get by. It was a difficult adjustment, but I kept telling myself it was temporary—just a step on the path to healing.
Chemotherapy and Radiotherapy
Once I’d healed enough from the surgery, it was time to start chemotherapy and radiotherapy. To be honest, I wasn’t sure what to expect. I’d heard the horror stories of how difficult it could be, and I was nervous about the side effects. The treatments were exhausting—nausea, fatigue, and the feeling that I was constantly drained. There were days when I didn’t know how I was going to make it through the next round, but I kept pushing myself. The helpline at the OPA was a true lifeline for me. I was able to connect with a patient buddy who had been through a similar experience, and it made all the difference.
Post Treatment
I remember the day I got that news that my cancer was in remission – it felt like a weight had been lifted off my shoulders. But as relieved as I was, I knew the real work was just beginning. I had to regain my appetite and adjust to life after treatment.
Swallowing was still difficult, and I had to learn to be patient with my body. Eating small, frequent meals became my new normal. My doctors worked with me to adjust my diet, and slowly, I started feeling more like myself again. I found the OPA literature beneficial.
Looking Ahead
As the months went by, I started to appreciate life in a whole new way. I took nothing for granted anymore. Every day was a gift, and I was determined to make the most of it. My family and I made plans—small things, like walks in the park, little trips away, and cooking meals together. Things I used to do without thinking now felt like a celebration.
I’m still here, still fighting, and still grateful for every moment I have, and this experience has taught me the true power of strength and the importance of never giving up.
My name is Anna, and I’ve always been an active, vibrant woman who loved cooking, hiking, and spending time with my family. But one day, I started noticing subtle symptoms—difficulty swallowing, occasional heartburn, and a feeling of something being stuck in my chest. At first, I brushed it off as just indigestion, but as time went on, the symptoms only worsened. Eventually, I decided to see my doctor. After several tests, I received the life-changing news: I had oesophageal cancer.
The Shock of Diagnosis
The news was a complete shock. I never imagined that something as simple as heartburn could lead to such a serious diagnosis. I was overwhelmed with fear and uncertainty about what was to come. I remember feeling paralysed by the unknown, but my family, especially my husband Mark, was right by my side. My doctor explained that my cancer was caught early, which was a good sign, but I knew there was still a long road ahead.
My Treatment
My treatment included surgery to remove part of my oesophagus, followed by chemotherapy and radiotherapy to make sure the cancer was completely gone. The surgery came first, and I won’t lie—I was terrified. I knew it was necessary, but the thought of it was daunting.
The recovery after the surgery was tough. The first few weeks were some of the hardest of my life. I struggled with swallowing, and I felt weak and exhausted. But I had an incredible team of healthcare professionals supporting me—doctors, nutritionists, physiotherapists. Slowly, I began to heal, and though it was hard, I knew it was a step in the right direction.
The Road to Recovery
After several months of treatment, I received the news I had been hoping for: my scans showed that the cancer was in remission.
I focused on rebuilding my strength, both physically and mentally. It wasn’t easy adjusting to new eating habits and managing difficulty with swallowing was a big challenge. I had to learn how to eat smaller, more frequent meals, and take my time with every bite. But with the help of my doctors and dietitians, I learned how to make it work, and eventually, I was able to enjoy food again. It wasn’t the same as before, but it was still something I could appreciate. I found the literature from the OPA Cancer Charity really helpful, I can’t thank them enough.
OPA also put me in touch with a local cancer support group. Meeting others who had been through similar experiences was incredibly comforting. We shared our stories, supported each other, and offered advice and encouragement. It helped me feel connected and gave me even more hope for the future.
Embracing Hope and Resilience
Throughout this journey, hope was my constant companion. Each day of recovery brought its own set of challenges, but also new reasons to be hopeful. Every small victory—feeling less tired, gaining a little weight, or just being able to enjoy a day without needing to rest—became something to celebrate. I realised that cancer didn’t define me. It was just one part of my story.
Today, over a year since my treatment ended, I’m doing better than I could have imagined. I’m back to hiking, cooking meals with my family, and living life with a deeper appreciation. Oesophageal cancer tried to take a lot from me, but it couldn’t take away my hope, my strength, or my will to keep fighting.
Looking back, my journey wasn’t easy, but it’s a testament to the power of recovery and resilience. It shows that even in the face of a difficult diagnosis, there’s always hope—and the possibility of finding joy and strength once again.
My Story of Stage 2 Oesophageal Cancer
I was diagnosed with stage 2 inoperable oesophageal cancer in November 2020, just after the start of the second lockdown. On further investigation it emerged that there was a ‘bulky tumour’ in my oesophagus and wrapped around the pericardium of my heart. There was one affected lymph node which was contained within my chest cavity.
I have none of the risk factors associated with oesophageal cancer as I have always had a low BMI, have never smoked, hardly ever drunk alcohol, didn’t eat spicy food and had no evidence of acid reflux, indigestion, burping or any of the reported risk factors. The only possible symptom I had, prior to having difficulty swallowing, was a constant gnawing sensation with which I had presented to my GP in 2016, and been referred me for an endoscopy ( I have an excellent GP). I observed this scope as I was not sedated and could see nothing suspicious, not that I would necessarily know, but nor could the Doctor who did it. Retrospectively I wonder if there were some very early cell changes (pre- cancerous), that the current research into the use of the cystosponge may have picked up back then.
I have been a nurse for 45 years, and I do remember learning from my medical texbook as a student nurse, about gnawing being a symptom of gastric or duodenal ulcers, as they were referred to in those days. But I never hear that symptom mentioned in current literature so I do wonder what current thoughts would be about this. The only other risk factor that I could have had, and again is not frequently quoted in the literature, was that I tended to drink my fluids quite hot. I was also shown to have a positive result for faecal occult bloods when I was screened for bowel cancer the year before. I was called for a colonoscopy and again there really was nothing to show on that investigation. I retrospectively wonder if this could have been from my oesophageal tumour, which when diagnosed a year later, was 8cm long in the mid- region of my oesophagus. I asked my Oncologist if this could be the case and she said she thought it was possible. My colleague believes I had had it for a long time, as I hadn’t looked well.
On diagnosis I set out on what was a challenging 3 months of active treatment, which I think was quite aggressive. I was eligible to enter the SCOPE 2 trial for which I had a raft in investigations (hampered a little by lockdown). Scope 2 is a first line trial that you may be eligible for from the start. You start with the standard chemo and before your next three weekly chemo have a further PET scan. You are then randomised into the standard chemo or an alternative, depending, I think, on certain factors such as the amount of reduction in the size of the tumour in those three weeks. I was randomised into an alternate chemo, but one that is already used, certainly at the Trust I was being treated at. As well as this you are randomised into the standard radiotherapy of 50 rads, or the experimental dose of 60 rads – I was randomised into the standard radiotherapy, which was to prove a ‘blessing’ given later treatment outcomes.
I was used to visiting patients who where having or had had chemo, so I think I was very well prepared for how unwell I would be. I am also very determined but maybe I was lucky to tolerate the treatment (just about although very poorly), and also had a naso-jejunal feeding tube which goes into the jejunam, beyond the stomach (NJ tube). This was my ‘life saver’ as I couldn’t eat for weeks. I made it through the full treatment, ending up in hospital only at the end with septicaemia and pancytopenia (very few blood cells), for which I was treated with strong IV antibiotics and a blood transfusion. I was poorly and weak and had dealt with the treatment almost on my own, due to lockdown. I was very lucky to be able to organise a rota of just a few people who offered to drive me to the hospital for all the chemo and combined chemo and radiotherapy (the latter being for 5 weeks at the end with weekly chemo. I am eternally grateful to all those friends and other friends who have helped or supported during this difficult time (especially with lockdown).
After the treatment I still couldn’t swallow very much and kept being sick. I continued with the feed and NJ tube while it lasted. Initially my Oncologist thought it was inflammation of my oesophagus, but at my post treatment CT scan after 6 months, it was very evidently a stricture. I then spent the next year having further endoscopies under sedation and dilations (having to self-isolate for three days prior to them each time). I think I had at least ten in total. Whilst I was having these I developed severe back pain in the November of 2021, which revealed a spontaneous vertebral wedge fracture of the thoracic vertebra, behind the region of the tumour. Further pain resulted in a cascade of four more vertebral fractures which became evident when I had a Dexa scan (scan of my bones), which my GP had arranged speedily. I turned out to have pre-existing severe osteoporosis, probably due to anorexia nervosa (but never made myself sick), that I had for a number of years in my late teens/early 20’s at a time when this was not monitored.
So I have been on a bit of journey. I walked off my shift the day before that diagnostic endoscopy in November 2020. I didn’t believe it could be anything so serious, as that would have been making a fuss, but I have never returned to nursing as it just hasn’t been realistic with my back pain, stricture and vomiting and the fatigue I experience even now. I have now survived for 3 1/2 years and so far can’t find anyone else in my situation. I think I may be lucky, but it has meant really adjusting and adapting to a changed lifestyle, as I was so active before and worst of all nursing. But life serves you challenges and I was lucky to be able to survive the treatment and still get out and about and I walk each day now, albeit in a more limited way- especially with the fatigue.
There are several areas I wonder about and would like to raise awareness of, to try to help others going through what I have been through. Why isn’t the gnawing sensation ever mentioned? Would I ever have been presented for screening with the cystosponge, as I had no real recognised risk factors and could I have been diagnosed sooner? Could the knowing sensation have been an indicator of oesophageal cancer? For breast cancer, patients have a Dexa scan to screen for osteoporosis due to the hormone involvement. Would this ever happen for oesophageal or certain other cancers where radiotherapy is quite strong and the patient has a history of an eating disorder? It may not have made a difference but I could I could maybe have started the treatment of Denusomab injections every six months for my oesteoporosis, sooner? Denusomab injections are used to slow and strengthen bones. I also think I was very lucky not to have been randomised into the higher dose of radiotherapy as the standard dose did enough damage.
I am most grateful to my Consultant and the Team at the University Hospital of Coventry and my wonderful GP ( who was and is always ‘there for me’) – my care has been ‘second to none’, despite all the challenges of COVID.
My name is Mike, I suppose I deserved my cancer!
After years of smoking, drinking alcohol to excess and bad diet choices I suffered with acid reflux and was diagnosed with a hiatus hernia in 1987 at a Bupa Hospital in Harpenden, but wasn’t told anything about what to do or what it could lead to.
Fast forward to around July 2017 when I had a medication review, by this time it was being controlled by tablets and Endoscopies. I was told I was overdue for an endoscopy which I thought was recent, turned out it was 6 years ago rather than every year that they suggested.
The following fortnight I made an appointment with the doctor for 3 things.
- I had burnt my armpits using a new flavour of Right Guard deodorant.
- I was getting bad night cramps
- I had a strange feeling in my tummy which was a tummy ache, just strange and had been there for about 2 weeks.
Little did I know that that tin of Right Guard was to save my life!
I was given a cream for my armpits. Tablets for the night cramps and sent for an Endoscopy a week later.
I was sent a letter from the consultant asking me to attend an appointment at Bedford Hospital where they conducted the endoscopy on 4th October 2017 and I was told I had a cancer at the base of my oesophagus where it joined the stomach.
They had already had a video call meeting to discuss my case with Addenbrooks Hospital.
I left the appointment that I attended on my own and cried when I got in my car. I rang my wife who was at work and told her.
An appointment was made to try a laser endoscopy to burn it out but it wasn’t an option then to see one of only 6 surgeons in the country who could do key hole surgery to remove my oesophagus and stretch my stomach to replace it.
On January 30th 2018 (isn’t it funny that you remember the exact dates ) I had a 8.5 hour operation in which they also sewed up a hernia and took my appendix out while they were there.
The operation was a complete success and no need for chemotherapy or radiotherapy.
I was supposed to be in for 3 nights and come out with a feeding tube. Unfortunately, I complicated it by having a stroke on ICU the next day. It wiped out my right side completely, I woke up 12 days later, with a tracheotomy and not being able to move.
I was in hospital and rehab until 21st June 2018.
Here I am 6 years later, can eat well, can walk and use my right arm, still have right side weakness and only one step away from a face plant but a survivor.
I am a typical bloke who didn’t look after myself and left things too long, but well done for burning my armpits Right Guard!
Hi, I’m Claire, I’m an oesophageal cancer patient.
Two and a half years ago I started having trouble swallowing bread and chicken, it felt like the food was getting stuck in my food pipe and wouldn’t go down for up to a minute each time. Aside from that I was well and healthy – I hadn’t smoked for 25 years and I walked and went for 10-mile cycle rides three times a week. I ignored the struggle to swallow some foods for a couple of months, thinking it was nothing serious, just acid reflux or something like that. Luckily for me, my partner had known someone with oesophageal cancer and he knew this could be a symptom of the disease. He made me go to my GP, and thankfully she took the symptoms seriously too.
I was suddenly put on a fast-tracked pathway where I got the results from every test within two weeks. I believe that process, and my partner’s insistence about getting myself checked, saved my life. I was diagnosed with OC in September 2021, had chemo for four months then had an eight-hour operation to remove my oesophagus and the tumour in it. I’ve been slowly recovering ever since. It’s been a real slog, taking two years to go from six stone to eight, and be able to eat a range of different foods. But I won’t ever complain about this because I’m one of the lucky few – two thirds of the people diagnosed with oesophageal cancer find out about it too late to have the operation or anything else that can potentially save their lives.
That’s why I am passionate about raising awareness of this cancer – and the potential symptoms everyone needs to get checked out as soon as possible. They are having persistent heartburn or acid reflux, difficulty swallowing food, hiccups that won’t go away, unexplained pain in your chest and excessive burping or inability to burp. Suffer with any of these for more than three weeks and you have to get to your GP straight away to ask for a scan.
I’d never heard of oesophageal cancer until I was diagnosed with it, but I’d love other people to know it exists, so they can get treated and survive it instead of having it diagnosed too late
