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
Month: February 2025
“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
The image above is of Matt.
Jonny’s Story – “This year I am raising money for OPA, a charity supporting the lives of those affected by Oesophageal and Gastric Cancer.
In October 2023 Matt, my brother in law was diagnosed with cancer and began treatment immediately. Oesophageal cancer is one of the most aggressive forms and unfortunately Matt lost his battle with Cancer on the 1st August at 10:48pm surrounded by his wife (my sister) Louise, their daughter ( my niece) and my mum.
This type of cancer unfortunately is super at aggressive and a lot of the time only picked up in the later stages. Matts diagnosis was in October, at that time we were told it had already spread around his body into his lymph nodes and he was stage 4 with a 2 year life expectancy.
Matt got 9 months and passed away at 48yrs old.
When going through this kind of journey what becomes apparent is the devastating effects it has, it’s like a tornado, not just the physical aspects but the mental aspect too. On one side your giving it everything you have to beat the unbeatable diagnosis, trying to stay positive and fight, and on the other you’re being told to get everything in order and spend quality time with your family while you have it.
The truth is, we all know someone who has been affected directly or indirectly by some form of Cancer. This year I am aiming to complete 5+ half marathons and looking to finish the year with a 50k+ challenge.” – Jonny Blake
So far, Jonny is taking part in the Royal Parks Half Marathon, Saucony 10k and is on the waiting list of a few others!
If you would like to support Jonny’s fundraising, click here.
Saucony 10k
“I ran in memory of one of my oldest friends, Paul Greaves that passed away last March (2024). Around Christmas last year he got a bad back and by the time he was diagnosed with oesophageal cancer that had spread, it was too late to save him. He left a wife and 3 daughters and they nominated the charity after the support they received during this difficult time. Committing to this really focused my training and after never running more than 1km before 2023, I was up at 5.30am training 5 times a week.
I completed the Hong Kong Standard Chartered Half marathon in under two and a half hours which was my target and I’m grateful to everyone that supported and sponsored me along the way.” – Andrew Woodfine
Abstract
Background
Long-term symptom burden and health-related quality-of-life outcomes after curative oesophageal cancer treatment are poorly understood. Existing tools are cumbersome and do not address the post-treatment population specifically. The aim of this study was to validate the six-symptom LASORS tool for identifying patients after curative oesophageal cancer treatment with poor health-related quality of life and to assess its clinical utility.
Methods
Between 2015 and 2019, patients from 15 UK centres who underwent curative-intent oesophageal cancer treatment, and were disease-free at least 1 year after surgery, were invited to participate in the study and complete LASORS and European Organisation for Research and Treatment of Cancer QLQ-C30 and QLQ-OG25 questionnaires. Receiver operating characteristic curve analysis was used to examine the accuracy of the LASORS tool for identifying patients with poor health-related quality of life.
Results
A total of 263 patients completed the questionnaire. Four of the six LASORS symptoms were associated with poor health-related quality of life: reduced energy (OR 2.13 (95% c.i. 1.45 to 3.13)); low mood (OR 1.86 (95% c.i. 1.20 to 2.88)); diarrhoea more than three times a day unrelated to eating (OR 1.48 (95% c.i. 1.06 to 2.07)); and bloating or cramping after eating (OR 1.35 (95% c.i. 1.03 to 1.77)). The LASORS tool showed good diagnostic accuracy with an area under the receiver operating characteristic curve of 0.858 for identifying patients with poor health-related quality of life.
Conclusion
The six-symptom LASORS tool generated a reliable model for identification of patients with poor health-related quality of life after curative treatment for oesophageal cancer. This is the first tool of its kind to be prospectively validated in the post-esophagectomy population. Clinical utility lies in identification of patients at risk of poor health-related quality of life, ease of use of the tool, and in planning survivorship services.
This article is from British Journal of Surgery | Oxford Academic
Thank you so much to Caitlin Strong, who is running the Great North Run on behalf of the OPA Cancer Charity, in memory of her Dad.
“I set myself a goal of doing 30 new things before I turn 30. After, watching on the side lines last year I thought I’d give the Great North Run a go. When I didn’t make the first ballot for the GNR – I changed it from running 13.1 mile run to a 3 mile run (a big difference I know!) When the January ballot came out, I thought I’d give it a second go, little did I know this time round I’d get a ‘Yes you’re in!’ email – that’s when it sunk in.
I’m not a runner, but I’m determined to train and complete the GNR in memory of my Dad, George who lost his life to oesophageal cancer in July 2022. It was a short battle as he was only diagnosed in the February. At the time we didn’t really know much about that type of cancer, which is why I want to raise money and awareness for OPA. My dad was a very sporty person when he was younger and I think he’d be proud of me for accepting the challenge to complete a half marathon! I don’t have a set time, the most important thing for me is crossing the finish line! What will keep me going is reminding myself of the reasons why I decided to run the race and who I am running for.” – Caitlin Strong
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.
Main symptoms of oesophageal cancer
There are many possible symptoms of oesophageal cancer, but they might be hard to spot.
They can affect your digestion, such as:
- having problems swallowing (dysphagia)
- feeling or being sick
- heartburn or acid reflux
- symptoms of indigestion, such as burping a lot
Other symptoms include:
- a cough that is not getting better
- a hoarse voice
- loss of appetite or losing weight without trying to
- feeling tired or having no energy
- pain in your throat or the middle of your chest, especially when swallowing
- black poo or coughing up blood (although these are uncommon)
If you have another condition, such as gastro-oesophageal reflux disease, you may get symptoms like these regularly.
You might find you get used to them. But it’s important to be checked by a GP if your symptoms change, get worse, or do not feel normal for you.
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.
