Please note that these questions are monitored so that any inappropriate use of this Q&A facility can be selectively removed before it reaches this page of the web site. This monitoring process means that there will be a delay before your question appears on this page.
With your permission we may forward your question to the medical team. Again with your permission, we may publish your question unanswered in order to get feedback from other OOSO Members.
This listing of questions, shows the answers that we offer in return. We are former patients, having first-hand experience of these cancers, so our answers are based on our own practical knowledge and what we know from talking with clinicians about our own circumstances.
We do not pretend to know all the answers, and indeed because treatments are constantly evolving and improving, we may not be aware of the very latest innovations.
However, the following Q&As are a fair and accurate summary of our current knowledge and experience – the answers given are reasonably succinct, for easy and informative reading.
Our sources of statistics and quotes include the National Oesophageal and Gastric Cancer Audit (NOGCA) and figures published on recognised websites, most notably Cancer Research UK.
These Q&As do not provide detailed dietary advice as it is such a broad and very important topic. To read more about diets click here.
You will find information that is similar to these Q&As within our OOSO booklet. Click here to view a copy or you can download a PDF version of the booklet if you click here.
As always, we welcome feedback and seek to improve the support we offer our readers.
These answers were last reviewed in February 2022
- 3) What are oesophageal cancers?
- 4) How common are oesophageal cancers?
- 5) Are oesophageal cancers fatal?
- 6) Are these cancers hereditary?
- 7) Who most commonly gets these cancers and why?
- 8) What are typical symptoms?
- 9) What should I do if I think I have symptoms?
- 10) What tests are available to diagnose these cancers?
- 11) When will I know for sure that I have cancer?
- 12) How do I cope with a cancer diagnosis?
- 13) What happens after a cancer diagnosis?
- 14) What treatment options are available?
- 15) Is chemotherapy effective?
- 16) What are the common side effects of chemotherapy?
- 17) Is radiotherapy effective?
- 18) What are the common side effects of radiotherapy?
- 19) Is surgery effective?
- 20) What are the immediate after effects of surgery?
- 21) If I cannot have surgery, what other options are there?
- 22) Is there anything I can do to help myself through treatment stages?
- 23) What are the surgical options?
- 24) Does surgery hurt?
- 25) How long will I be in hospital?
- 26) How long does it take to recover from surgery?
- 27) Will I get back to my old normal?
- 28) What happens when I am discharged home?
- 29) How can I help myself to recover more quickly after surgery?
- 30) What are the most common side effects of surgery?
- 31) How can I minimise post operative side effects?
- 32) Are these side effects life changing?
- 33) Will I have a big unsightly scar after surgery?
- 34) Can the cancer return after surgery?
- 35) Having had this cancer am I more prone to developing other cancers?
- 36) Can I carry on working?
- 37) If I have to give up work, can I seek financial support?
- 38) Will this stop me from driving?
- 39) Can I be physically fit and do sports I enjoy?
- 40) Can I travel, drink and have sex again!?
About OOSO
1) What is OOSO and what do we do?
The Oxfordshire Oesophageal and Stomach Organisation (OOSO) is a charity run by volunteers. We support new and former cancer patients, mostly from the home counties of Southern England, but in fact anybody who wishes to contact us. We provide information and emotional support based on our own first-hand experience as former patients. We are not formally trained councillors, but we listen, empathise and offer advice when asked. Over a typical year we have direct contact with more than 200 new patients and their family and friends.
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2) What can OOSO do for me?
We find that about 60% of newly diagnosed patients in our catchment area get in touch with us for advice and support. Feedback about what we do has always been positive. We seem to be able to help and support everyone who contacts us, even if only in the smallest of ways. While we are impartial, we say it how it is. We speak from the heart and provide reassurance when we can, despite circumstances that might feel dire.
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About Oesophageal and Stomach Cancer
3) What are oesophageal cancers?
There are two main types of oesophageal cancer; (a) adenocarcinoma, when the mucus producing glands in the lining of the oesophagus become cancerous, usually at the bottom end of the oesophagus where it meets the stomach, and (b) the less common form, squamous cell carcinoma, which can occur when the thin, flat cells lining the oesophagus become cancerous, usually in the upper and middle regions of the oesophagus.
Stomach cancer, also called gastric cancer, is predominantly adenocarcinomas, like oesophageal cancer, developing from cancerous gland cells but in the inner lining of the stomach, or mucosa. These can start in different parts of the stomach which might affect treatment options.
Oesophageal cancers tend to develop slowly at first, meaning symptoms are difficult to detect. But when more advanced they can grow and spread relatively quickly, which is why early diagnosis is so important in treating these cancers effectively.
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Stomach cancer, also called gastric cancer, is predominantly adenocarcinomas, like oesophageal cancer, developing from cancerous gland cells but in the inner lining of the stomach, or mucosa. These can start in different parts of the stomach which might affect treatment options.
Oesophageal cancers tend to develop slowly at first, meaning symptoms are difficult to detect. But when more advanced they can grow and spread relatively quickly, which is why early diagnosis is so important in treating these cancers effectively.
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4) How common are oesophageal cancers?
Oesophageal cancers are relatively uncommon. Each year, approximately one person in 7,000 will develop oesophageal specific cancer, totalling around 9,000 cases nationally each year, and one person in 10,000 will develop stomach cancer, totalling approximately 6,000 cases annually. Overall numbers of cases have remained relatively unchanged in recent decades, with oesophageal cancers on a slow rise, and the numbers developing gastric cancers slowly falling due to better health care of stomach related bacterial complaints.
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5) Are oesophageal cancers fatal?
It is important to remain positive because everyone’s circumstances are different, and treatments are becoming increasingly more effective year on year. According to Cancer Research UK, survival rates have quadrupled over the last forty years..
Sadly, overall however, long-term survival rates beyond ten years remain fairly low, with approximately 10% survival of those with oesophageal cancer and 15% for those with gastric cancer (source CRUK and ONS, 2019).
But while these figures appear stark, it is important to note that in the medium term, that is up to five years, treatment plans are in most cases very effectively prolonging life expectancy.
These treatment plans include chemotherapy, radiotherapy, surgery and other interventions like gastric stents.
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Sadly, overall however, long-term survival rates beyond ten years remain fairly low, with approximately 10% survival of those with oesophageal cancer and 15% for those with gastric cancer (source CRUK and ONS, 2019).
But while these figures appear stark, it is important to note that in the medium term, that is up to five years, treatment plans are in most cases very effectively prolonging life expectancy.
These treatment plans include chemotherapy, radiotherapy, surgery and other interventions like gastric stents.
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7) Who most commonly gets these cancers and why?
Oesophageal cancers are more common in men, approximately three men will develop these cancers to one woman. The average age of diagnosis is around seventy, however patients as young as forty five do develop these cancers.
Older age is the main risk factor for oesophageal cancer, but a number of other factors can increase risk. For example, smoking, obesity and alcohol have been identified as contributing to the risk of oesophageal cancer.
Reflux (when stomach acid escapes from the stomach into the oesophagus) is also associated with an increased risk of getting oesophageal cancer although most people who experience reflux will not go on to develop oesophageal cancer.
So, having an overall healthy lifestyle will undoubtedly help to reduce the risk of developing an oesophageal cancer. However, there are no statistical studies that conclusively prove that any specific lifestyle choice causes oesophageal cancer. In fact, many patients are non-smokers, non-drinkers and keep themselves generally fit and healthy. Until studies are more conclusive, oesophageal cancer can best be described as a ‘bad luck’ cancer.
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Older age is the main risk factor for oesophageal cancer, but a number of other factors can increase risk. For example, smoking, obesity and alcohol have been identified as contributing to the risk of oesophageal cancer.
Reflux (when stomach acid escapes from the stomach into the oesophagus) is also associated with an increased risk of getting oesophageal cancer although most people who experience reflux will not go on to develop oesophageal cancer.
So, having an overall healthy lifestyle will undoubtedly help to reduce the risk of developing an oesophageal cancer. However, there are no statistical studies that conclusively prove that any specific lifestyle choice causes oesophageal cancer. In fact, many patients are non-smokers, non-drinkers and keep themselves generally fit and healthy. Until studies are more conclusive, oesophageal cancer can best be described as a ‘bad luck’ cancer.
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Symptoms and Diagnosis
8) What are typical symptoms?
In the earliest stages, very often there are no symptoms whatsoever; or just mild symptoms such as occasional acid reflux or heartburn. Such mild symptoms could easily be mistaken for other far more common and likely ailments, including stomach bacterial infections or ulcers.
If symptoms become more acute or frequent, it is important to see a GP. DO NOT IGNORE SYMPTOMS.
As cancer develops, the physical nature of the tumour may begin to (but not always) block the passage of food through the oesophagus and or stomach, causing discomfort during, or soon after eating. This might be a sensation of food being temporarily stuck or lodged in the lower oesophagus, but eventually passing through. In more advanced cases, it can become almost impossible to swallow normal food. It is strongly advisable to see a GP from the earliest stages of any noticeable symptoms. Having a check-up and requesting an endoscopy investigation is simple and easy, and the safest thing to do.
Recommendation: (a) people aged over forty who are concerned that they might have unexplained symptoms should see their GP and request an endoscopy test to check that cells in the oesophagus and stomach are healthy. (b) repeat the endoscopy check-up every 2-3 years thereafter, or immediately if acute symptoms occur.
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If symptoms become more acute or frequent, it is important to see a GP. DO NOT IGNORE SYMPTOMS.
As cancer develops, the physical nature of the tumour may begin to (but not always) block the passage of food through the oesophagus and or stomach, causing discomfort during, or soon after eating. This might be a sensation of food being temporarily stuck or lodged in the lower oesophagus, but eventually passing through. In more advanced cases, it can become almost impossible to swallow normal food. It is strongly advisable to see a GP from the earliest stages of any noticeable symptoms. Having a check-up and requesting an endoscopy investigation is simple and easy, and the safest thing to do.
Recommendation: (a) people aged over forty who are concerned that they might have unexplained symptoms should see their GP and request an endoscopy test to check that cells in the oesophagus and stomach are healthy. (b) repeat the endoscopy check-up every 2-3 years thereafter, or immediately if acute symptoms occur.
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9) What should I do if I think I have symptoms?
Make an appointment with your GP as soon as you can. If your GP is reluctant to refer you to the hospital for an endoscopy, persist! Tell them for peace of mind it’s what you want. It is also possible to ‘go privately’ should you feel it necessary.
A GP may insist that you try other medications first or have tests for bacterial infections in the stomach lining. If symptoms are mild, these things need to be ruled out, but if swallowing is an issue, insist on having an endoscopy.
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A GP may insist that you try other medications first or have tests for bacterial infections in the stomach lining. If symptoms are mild, these things need to be ruled out, but if swallowing is an issue, insist on having an endoscopy.
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10) What tests are available to diagnose these cancers?
Currently in England, an endoscopy remains the best available investigative technique. This is a short and simple procedure carried out in a hospital setting by trained experts. A thin cable with a camera and sample tool on the end is inserted down the throat and into the stomach. A mild sedative or anaesthetic throat spray helps to reduce any discomfort. The procedure takes less than an hour to complete.
A relatively new technique called the ‘Cyto-sponge’ has been adopted in Scotland as a preliminary test that GPs are able to conduct within their practices. However, it has yet to be rolled out in England and Wales. This is a simple test where a small sponge-tablet is swallowed and retrieved back up the gullet via a thin thread, then sent to a lab for analysis.
A multi-cancer blood test is currently under development and maybe available by 2024.
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A relatively new technique called the ‘Cyto-sponge’ has been adopted in Scotland as a preliminary test that GPs are able to conduct within their practices. However, it has yet to be rolled out in England and Wales. This is a simple test where a small sponge-tablet is swallowed and retrieved back up the gullet via a thin thread, then sent to a lab for analysis.
A multi-cancer blood test is currently under development and maybe available by 2024.
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11) When will I know for sure that I have cancer?
Only after having had a test that has been properly examined by trained experts will you know conclusively what your diagnosis is. Pathology samples, or cells taken from the oesophagus or stomach, usually take up to ten working days to analyse. Results of a test should be discussed by prior written appointment, face to face with the Consultant Oncologist or Surgeon assigned to your case.
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12) How do I cope with a cancer diagnosis?
A cancer diagnosis will always be a big shock for anyone, and inevitably loved ones and friends involved. Initially it leaves us feeling stunned - like hitting a brick wall, understandably fearing the absolute worst. It may take anything up to a week for the initial shock to subside, to be replaced by a series of very natural reactions - often denial “this can’t be happening to me”, or anger “why is this happening to me” and sometimes sadly depression, “I feel helpless” - “what’s going to happen to my family”. Unfortunately, it is an emotional rollercoaster time for everyone involved.
But be completely assured, your natural ability to cope with a diagnosis will take over, a sense of survival and determination to get better, to understand more about the cancer and what can be done to beat it, are thoughts and actions you will instinctively act upon.
And be very assured, medical teams within the NHS are well rehearsed and practiced at saving people’s lives. They are an incredible force for our wellbeing. You will receive the very best possible treatment available within the NHS. As good as anywhere in the world.
So, in summary, here are a few simple tips to help cope with an oesophageal cancer diagnosis:
But be completely assured, your natural ability to cope with a diagnosis will take over, a sense of survival and determination to get better, to understand more about the cancer and what can be done to beat it, are thoughts and actions you will instinctively act upon.
And be very assured, medical teams within the NHS are well rehearsed and practiced at saving people’s lives. They are an incredible force for our wellbeing. You will receive the very best possible treatment available within the NHS. As good as anywhere in the world.
So, in summary, here are a few simple tips to help cope with an oesophageal cancer diagnosis:
- Right from the off, try to remain calm and keep a sense of positivity, these are cancers that can be treated and managed effectively, so think about what can be done to beat it.
- Look for support, share your news with your closest family first – talking is a great way to release pressure and lessen anxiety. It’s good to talk with friends too if you feel ready for it.
- Don’t be tempted to delve into the internet for answers before you are clear about your own circumstances. Have detailed discussions with your lead clinician/consultant first. The internet can be misleading and cause unnecessary anxiety. We at OOSO have been through these cancers ourselves. We know how important it is to listen to our doctors first.
- Be assured modern treatments work very well and aren’t as difficult to cope with as they used to be.
- Call us at OOSO if you would like to chat with folk who have been through all the treatment. We are here to lean on.
13) What happens after a cancer diagnosis?
To recap - the normal process is for a GP to initially refer their patient to the appropriate team at a local hospital. They will carry out investigative tests and inform the patient of the results.
The patient will be assigned to a lead or Consultant Oncologist, who will coordinate all necessary appointments. If oesophageal cancer is diagnosed then a treatment plan will be discussed with you. If a surgical option is recommended as part of the plan, you will also be assigned to a Consultant Surgeon to oversee surgical stages of the treatment plan.
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The patient will be assigned to a lead or Consultant Oncologist, who will coordinate all necessary appointments. If oesophageal cancer is diagnosed then a treatment plan will be discussed with you. If a surgical option is recommended as part of the plan, you will also be assigned to a Consultant Surgeon to oversee surgical stages of the treatment plan.
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Treatment Options and Side Effects
14) What treatment options are available?
The treatment options for oesophageal cancer depend on the type, location and stage of cancer.
Curative treatment
If the cancer is at an early stage, the main treatment option is surgery to remove the affected part of the oesophagus or stomach. For very early-stage cancers, it may be possible to remove just the abnormal areas in the lining of the oesophagus or stomach using an endoscopy (tube) placed down the throat.
Patients may also have chemotherapy (using drugs to destroy cancer cells) and/or radiotherapy (using radiation to destroy cancer cells) before or after surgery.
Certain types of early-stage oesophageal cancer may be suitable for treatment with only chemoradiotherapy (without surgery).
However, these treatments place a great deal of strain on the body, so patients who are frail or very unwell may decide, together with their doctors, that curative treatment is not suitable.
Palliative treatment
If curative treatment is not suitable because the cancer is very advanced or a patient is too unwell for treatment, they may receive palliative therapies which aim to reduce the impact of symptoms and improve quality of life, but do not cure the cancer.
Palliative therapies include endoscopic stenting (a tube, known as a stent, is placed into the oesophagus to keep blocked parts of the oesophagus open, which helps the patient to swallow); palliative chemotherapy or radiotherapy; and best supportive care (no treatment beyond the immediate relief of symptoms).
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Curative treatment
If the cancer is at an early stage, the main treatment option is surgery to remove the affected part of the oesophagus or stomach. For very early-stage cancers, it may be possible to remove just the abnormal areas in the lining of the oesophagus or stomach using an endoscopy (tube) placed down the throat.
Patients may also have chemotherapy (using drugs to destroy cancer cells) and/or radiotherapy (using radiation to destroy cancer cells) before or after surgery.
Certain types of early-stage oesophageal cancer may be suitable for treatment with only chemoradiotherapy (without surgery).
However, these treatments place a great deal of strain on the body, so patients who are frail or very unwell may decide, together with their doctors, that curative treatment is not suitable.
Palliative treatment
If curative treatment is not suitable because the cancer is very advanced or a patient is too unwell for treatment, they may receive palliative therapies which aim to reduce the impact of symptoms and improve quality of life, but do not cure the cancer.
Palliative therapies include endoscopic stenting (a tube, known as a stent, is placed into the oesophagus to keep blocked parts of the oesophagus open, which helps the patient to swallow); palliative chemotherapy or radiotherapy; and best supportive care (no treatment beyond the immediate relief of symptoms).
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15) Is Chemotherapy effective?
In most cases, yes.
In the past, chemotherapy earnt a bad reputation for being an extremely unpleasant treatment. While killing cancerous cells it also caused sickness and damage to a healthy body. But over the last decade new drugs and therapies have become much more focussed and tailored to different types of cancer with much reduced side effects and being very effective in shrinking tumours. Understandably, chemotherapy is a daunting prospect but be reassured it works very well and is definitely worth it.
Treatment usually requires a combination of drugs to be administered in liquid form by ‘intravenous infusion’, and others to be taken orally in tablet form. Infusions are administered in a hospital setting and typically take half a day to complete. A ‘course’ or ‘cycle’ of infusions are usually scheduled once a week over a 6-9 week period. Tablets are taken home with specific instructions that must be followed. Clinicians will take blood samples throughout the treatment plan to monitor how the patient is doing; to ensure the therapy is not causing any problems; and that the patient remains well throughout.
Once the chemotherapy has finished a follow-up CT scan will be arranged to measure the reduction in the size of the tumour as part of the preparations for surgery.
In my case, over a 9-week chemotherapy treatment plan the tumour shrunk by nearly 400% making it much easier to remove during the operation. I also found I could swallow and eat normally again after only four weeks of infusions and tablets. For me, chemotherapy was a vital part of my treatment.
After chemotherapy has finished be prepared for a few weeks ‘waiting’ for a follow up scan and then an appointment with your specialist. This can feel frustrating after weeks of treatment followed by another hiatus. But be reassured these are not delays but a time for you to recover from chemotherapy and to, hopefully, eat well and put on a little bit of weight. A welcomed break ahead of the next phase of your treatment plan.
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In the past, chemotherapy earnt a bad reputation for being an extremely unpleasant treatment. While killing cancerous cells it also caused sickness and damage to a healthy body. But over the last decade new drugs and therapies have become much more focussed and tailored to different types of cancer with much reduced side effects and being very effective in shrinking tumours. Understandably, chemotherapy is a daunting prospect but be reassured it works very well and is definitely worth it.
Treatment usually requires a combination of drugs to be administered in liquid form by ‘intravenous infusion’, and others to be taken orally in tablet form. Infusions are administered in a hospital setting and typically take half a day to complete. A ‘course’ or ‘cycle’ of infusions are usually scheduled once a week over a 6-9 week period. Tablets are taken home with specific instructions that must be followed. Clinicians will take blood samples throughout the treatment plan to monitor how the patient is doing; to ensure the therapy is not causing any problems; and that the patient remains well throughout.
Once the chemotherapy has finished a follow-up CT scan will be arranged to measure the reduction in the size of the tumour as part of the preparations for surgery.
In my case, over a 9-week chemotherapy treatment plan the tumour shrunk by nearly 400% making it much easier to remove during the operation. I also found I could swallow and eat normally again after only four weeks of infusions and tablets. For me, chemotherapy was a vital part of my treatment.
After chemotherapy has finished be prepared for a few weeks ‘waiting’ for a follow up scan and then an appointment with your specialist. This can feel frustrating after weeks of treatment followed by another hiatus. But be reassured these are not delays but a time for you to recover from chemotherapy and to, hopefully, eat well and put on a little bit of weight. A welcomed break ahead of the next phase of your treatment plan.
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16) What are the common side effects of chemotherapy?
Side effects vary between the drugs prescribed, however, the most common two side effects after an infusion or taking tablets are mild nausea and fatigue. Additional medication is prescribed to help reduce the sensation of nausea. These drugs are usually very effective. Resting during treatment is the sensible thing to do which helps sustain energy levels for longer. It is best to be driven to and from hospital after infusions.
Hair loss is not strongly associated with chemotherapy drugs prescribed for oesophageal cancers, however, up to 20% of patients will experience some hair loss. Ask your oncologist about this before chemotherapy is prescribed. Something called a ‘cold cap’ can be worn to help reduce hair loss. While they can be mildly uncomfortable to wear, feedback from patients suggest they do work. Hair always grows back.
Other possible and temporary side effects include loss of appetite; a reduced sensation of taste; mild tingling sensations in the finger tips, tongue and feet; more acute sensations of hot and cold; and mild headaches. Appetite and taste tend to recover quickly after treatments have finished but mild tingling in the feet, for example, may persist for weeks or months afterwards.
Side effects vary slightly from person to person but it is normal to fully recover afterwards.
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Hair loss is not strongly associated with chemotherapy drugs prescribed for oesophageal cancers, however, up to 20% of patients will experience some hair loss. Ask your oncologist about this before chemotherapy is prescribed. Something called a ‘cold cap’ can be worn to help reduce hair loss. While they can be mildly uncomfortable to wear, feedback from patients suggest they do work. Hair always grows back.
Other possible and temporary side effects include loss of appetite; a reduced sensation of taste; mild tingling sensations in the finger tips, tongue and feet; more acute sensations of hot and cold; and mild headaches. Appetite and taste tend to recover quickly after treatments have finished but mild tingling in the feet, for example, may persist for weeks or months afterwards.
Side effects vary slightly from person to person but it is normal to fully recover afterwards.
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17) Is radiotherapy effective?
Yes.
Modern radiotherapy is a very precise treatment guided by special scanning equipment to target tumours directly with concentrated radio waves leaving healthy tissue nearby undamaged. Tumours are significantly reduced in size.
Radiotherapy is quick and painless taking only a few minutes per session. The daily routine of travelling to hospital five or six days a week for up to four or six weeks is in itself a tiring experience. It is best to be driven to and from hospital towards the latter phases of treatment.
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Modern radiotherapy is a very precise treatment guided by special scanning equipment to target tumours directly with concentrated radio waves leaving healthy tissue nearby undamaged. Tumours are significantly reduced in size.
Radiotherapy is quick and painless taking only a few minutes per session. The daily routine of travelling to hospital five or six days a week for up to four or six weeks is in itself a tiring experience. It is best to be driven to and from hospital towards the latter phases of treatment.
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18) What are the common side effects of radiotherapy?
The most common side effects after several weeks of radiotherapy are fatigue and, for some patients, a burning sensation in the gullet. Radiotherapy has a habit of ‘continuing to work’ for up to two weeks after the last session. Patients are fully recovered from treatment typically from three to four weeks after their last session.
It’s not unusual to be offered a combination of chemotherapy and radiotherapy at the same time. The Consultant Oncologist will decide if they think it is necessary.
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It’s not unusual to be offered a combination of chemotherapy and radiotherapy at the same time. The Consultant Oncologist will decide if they think it is necessary.
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19) Is surgery effective?
Surgery is regarded as a curative option and only offered to those who’s cancers have not critically spread to other organs and who are physically well enough to cope with what is amongst the most invasive and major surgery procedures possible. It is a big operation, but very effective.
If surgery is possible, then the outcome is more often a very good one in terms of prolonged life. In practice it is a cure.
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If surgery is possible, then the outcome is more often a very good one in terms of prolonged life. In practice it is a cure.
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20) What are the immediate after effects of surgery?
See questions 23-33 covering various aspects relating to surgery.
The impact of the surgery itself on the body is the biggest and most immediate after effect. Because of the scale and nature of the surgery it is not something that will heal quickly. However, getting up and moving around from day one helps to accelerate the healing process. Our bodies respond well to gentle exercise helping us to open our airways and lungs getting blood moving to our extremities and giving us a physiological and psychological boost. A sense of recovering well and getting back to normal.
Feedback from patients suggest physical recovery from keyhole (small incision) surgery appears marginally quicker compared with full (large incision) open surgery. For obvious reasons, however, because internal reconstructive surgery with both keyhole and full resection is basically the same, all patients experience very similar side effects after surgery (see question 30 for more detail).
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The impact of the surgery itself on the body is the biggest and most immediate after effect. Because of the scale and nature of the surgery it is not something that will heal quickly. However, getting up and moving around from day one helps to accelerate the healing process. Our bodies respond well to gentle exercise helping us to open our airways and lungs getting blood moving to our extremities and giving us a physiological and psychological boost. A sense of recovering well and getting back to normal.
Feedback from patients suggest physical recovery from keyhole (small incision) surgery appears marginally quicker compared with full (large incision) open surgery. For obvious reasons, however, because internal reconstructive surgery with both keyhole and full resection is basically the same, all patients experience very similar side effects after surgery (see question 30 for more detail).
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21) If I cannot have surgery, what other options are there?
Palliative treatment
If curative treatment is not suitable because the cancer is very advanced or a patient is too unwell for treatment they may receive palliative therapies which aim to reduce the impact of symptoms and improve quality of life, but do not cure the cancer.
Palliative therapies include endoscopic stenting (a tube, known as a stent, is placed into the oesophagus to keep blocked parts of the oesophagus open, which helps the patient to swallow), palliative chemotherapy or radiotherapy, and best supportive care (no treatment beyond the immediate relief of symptoms).
It is comforting to share the emotional burden of palliative care with family and friends, or a trained counsellor. Trained counsellors can offer objective, impartial advice and support, sometimes family members find hard to give. Resignation and acceptance are big steps to make, but ultimately help with one’s peace of mind and quality of life towards the end.
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If curative treatment is not suitable because the cancer is very advanced or a patient is too unwell for treatment they may receive palliative therapies which aim to reduce the impact of symptoms and improve quality of life, but do not cure the cancer.
Palliative therapies include endoscopic stenting (a tube, known as a stent, is placed into the oesophagus to keep blocked parts of the oesophagus open, which helps the patient to swallow), palliative chemotherapy or radiotherapy, and best supportive care (no treatment beyond the immediate relief of symptoms).
It is comforting to share the emotional burden of palliative care with family and friends, or a trained counsellor. Trained counsellors can offer objective, impartial advice and support, sometimes family members find hard to give. Resignation and acceptance are big steps to make, but ultimately help with one’s peace of mind and quality of life towards the end.
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22) Is there anything I can do to help myself through treatment stages?
Follow the instructions and advice of your clinicians. Make sure you take all the tablets prescribed and attend every infusion appointment. If you feel unwell, contact the chemotherapy and or radiotherapy teams – they will advise and help you.
Stay determined and focussed on completing as much of the treatment plan as you possibly can. It can be quite challenging but you can do it. Don’t feel disappointed if there are ‘hic-ups’ throughout the treatment plan, for example if you are told there are delays for infusions or tablets need changing for whatever reason. It’s rare everything runs absolutely perfectly, but clinicians and nurses are excellent and do everything they can to help you through treatment without problems.
Ideally, be as fit and active as you can before treatment starts, and during treatment if you feel able to do light exercise and get outdoors for fresh air. But don’t ‘overdo it’, it is important to rest each day too, especially after infusions. There’s an important balance between keeping active and resting when you need to.
Some patients find they can continue working throughout treatment, which gives some indication that the effects are tolerable and normal life can continue. In my case, I was able to take time off work, which I found extremely beneficial on the days I needed to rest.
Keeping active is not only good for the body, it is excellent therapy for the mind. Having good mental health is so important throughout this whole experience – keeping fit, active and or just busy, with family and friends supporting you is an incredibly important part of feeling good, despite the circumstances, and getting well again.
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Stay determined and focussed on completing as much of the treatment plan as you possibly can. It can be quite challenging but you can do it. Don’t feel disappointed if there are ‘hic-ups’ throughout the treatment plan, for example if you are told there are delays for infusions or tablets need changing for whatever reason. It’s rare everything runs absolutely perfectly, but clinicians and nurses are excellent and do everything they can to help you through treatment without problems.
Ideally, be as fit and active as you can before treatment starts, and during treatment if you feel able to do light exercise and get outdoors for fresh air. But don’t ‘overdo it’, it is important to rest each day too, especially after infusions. There’s an important balance between keeping active and resting when you need to.
Some patients find they can continue working throughout treatment, which gives some indication that the effects are tolerable and normal life can continue. In my case, I was able to take time off work, which I found extremely beneficial on the days I needed to rest.
Keeping active is not only good for the body, it is excellent therapy for the mind. Having good mental health is so important throughout this whole experience – keeping fit, active and or just busy, with family and friends supporting you is an incredibly important part of feeling good, despite the circumstances, and getting well again.
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Surgery and Post-Operative Recovery
23) What are the surgical options?
There are a number of ways to remove cancerous tumours, each very much dependent on the location and nature of the tumour. The consultant surgeon will advise the patient which is the most appropriate option and why.
In essence, as technology develops, keyhole surgery has become much more common. Full resection, or abdominal surgery remains a very effective option, allowing the surgeon greater scope to see and remove problem tissue, especially where tumours are large. In fewer cases, the tumour is situated higher up the oesophagus, where surgery through the lower neck area remains a routine approach.
Surgery usually takes between 6 and 8 hours to complete depending on the specifics of the operation. The patient is asleep throughout, feeling absolutely nothing from start to finish, being fully and safely anaesthetised.
Surgical teams are very well practiced with these procedures - these are tried and tested operations that work extremely well.
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In essence, as technology develops, keyhole surgery has become much more common. Full resection, or abdominal surgery remains a very effective option, allowing the surgeon greater scope to see and remove problem tissue, especially where tumours are large. In fewer cases, the tumour is situated higher up the oesophagus, where surgery through the lower neck area remains a routine approach.
Surgery usually takes between 6 and 8 hours to complete depending on the specifics of the operation. The patient is asleep throughout, feeling absolutely nothing from start to finish, being fully and safely anaesthetised.
Surgical teams are very well practiced with these procedures - these are tried and tested operations that work extremely well.
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24) Does surgery hurt?
The patient is asleep throughout, feeling absolutely nothing from start to finish, being fully and safely anaesthetised. Most patients will be given an epidural beforehand and throughout, which very effectively manages pain afterwards when the patient is woken up within the Intensive Care Unit (ICU).
Pain management is excellent, and strangely after such a big operation, there is very little pain over the first few days in hospital.
There will be feelings of bruising and stiffness, and moving in bed will be a slow process. However, beds are automated and adjustable and nurses are always nearby to help if needed.
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Pain management is excellent, and strangely after such a big operation, there is very little pain over the first few days in hospital.
There will be feelings of bruising and stiffness, and moving in bed will be a slow process. However, beds are automated and adjustable and nurses are always nearby to help if needed.
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25) How long will I be in hospital?
It is normal to be in Intensive Care for 1-2 days after surgery, and then on the general Upper GI ward for up to eight more days. With the relatively new recovery program called “Enhanced Recovery After Surgery” (ERAS) patients are helped out of bed sooner and encouraged to get up and about, with assistance. The average stay in hospital times are coming down. Some patients are well enough to go home after six days on the general ward.
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26) How long does it take to recover from surgery?
Recovery times very much depend on the individual. Typically, discounting other health conditions, everyone takes around three months to recover sufficiently well to return to a relatively normal daily routine. This means being able to eat small but normal meals, drive, shop, work, travel, and do most normal things around the house. However, in reality, a full recovery can take up to a year or more and for a few it might be two years before they feel ‘truly normal’ again. This is because some of the side effects of surgery are life changing and it takes longer for some people to adapt to doing certain things differently.
For example, some patients after surgery need to be on a liquid or soft food diet for longer than others because their digestive system simply takes longer to adapt to the changes. For these patients, in the short term, it is harder to maintain or gain weight. This has knock-on consequences affecting energy levels and how they feel. While recovery is not the same for everyone it will happen, and in time all patients, return to a good quality of life.
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For example, some patients after surgery need to be on a liquid or soft food diet for longer than others because their digestive system simply takes longer to adapt to the changes. For these patients, in the short term, it is harder to maintain or gain weight. This has knock-on consequences affecting energy levels and how they feel. While recovery is not the same for everyone it will happen, and in time all patients, return to a good quality of life.
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27) Will I get back to my old normal?
Most patients thankfully return to a near normal life. But because of the trauma of having a life-threatening cancer and going through the challenging treatment and major surgery, it is inevitable that emotional and physical scars remain for years afterwards. So it is safe to say the whole experience is life changing, and for some it is transformative. People often go on to do things differently in their lives and looking back will say it was for the better. So yes, we nearly all get back to a near normal physical life and for some it becomes enriched by the experience.
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28) What happens when I am discharged home?
Patients will not be discharged until they are deemed fit and well enough to return home. The consultant in charge will meet with the patient daily, and review records to make sure that healing is well underway, that the bowel has started to function normally, and that there are no complications. Additionally, there are a series of gentle physical tests while on the ward that make sure the patient can walk sufficiently well unaided; can cope with stairs; can wash and dress; and can feed themselves. The patient also must have sufficient support at home, such as a partner, family or friends who can visit on a daily basis at first. When it is time to be discharged, arrangements are made for the carer, family, or friend to collect the patient and to be briefed by a nurse with ‘a home kit’. This kit includes instructions and any medications prescribed, for example pain killers and blood thinning medicine (a short course). Information will include telephone numbers to call if there are any queries or complications.
Going home might raise mixed thoughts, of happiness and relief, and maybe anxiety because of leaving the safe environment of the hospital ward. These are all very natural feelings, but after a few days of homely comforts most patients are glad to be back. Be assured, the safety net is still there, only a phone call away.
Ask a family member or friend to deliver a copy of the hospital discharge paperwork to your GP surgery, as sometimes this information can be delayed. This might help to speed things up when seeking an appointment or medication.
For relatively minor issues or concerns you should contact your GP in the first instance. But if you are worried about something that is clearly not right, don’t be afraid to ring the hospital numbers provided. During normal work hours, your Specialist Nurse will be a good person to call.
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Going home might raise mixed thoughts, of happiness and relief, and maybe anxiety because of leaving the safe environment of the hospital ward. These are all very natural feelings, but after a few days of homely comforts most patients are glad to be back. Be assured, the safety net is still there, only a phone call away.
Ask a family member or friend to deliver a copy of the hospital discharge paperwork to your GP surgery, as sometimes this information can be delayed. This might help to speed things up when seeking an appointment or medication.
For relatively minor issues or concerns you should contact your GP in the first instance. But if you are worried about something that is clearly not right, don’t be afraid to ring the hospital numbers provided. During normal work hours, your Specialist Nurse will be a good person to call.
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29) How can I help myself to recover more quickly after surgery?
As soon as you get home plan a daily routine of things to remember and do. Write it down as a list or on a calendar. This should include a meal plan, of eating six small meals a day ticking them off as you go, so you don’t forget to eat. Add to the daily list two or three short exercise sessions which might be as simple as walking around the house; going up and down stairs; leg lift exercises while sitting down and so on. As the days move on, try to be more ambitious with your exercise. After four weeks at home I was proud to be walking nearly two miles a day. Recovery might feel painfully slow, but if you make notes on your progress you will surprise yourself by how well you are doing. Don’t forget to add in a daily rest period. I found 1-2 hours rest mid-afternoon, helped a lot during the first three months.
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Side Effects After Surgery
30) What are the most common side effects of surgery?
In summary, the most common side effects during the first-year post-surgery are:
- Fatigue – it is very common to feel tired for weeks after surgery. This is a combination of the latent effects of the general anaesthetic and pain killers taken after surgery; the body's healing process using up energy; catching up on broken sleep and disruption over the long period of treatment; and the great sense of relief that it’s all over. Rest is the great healer. It is vitally important to listen to your body and rest when you feel tired.
- Because of the surgery the new stomach will be much smaller than before meaning that meal portions need to be smaller. It’s important to eat little but often, up to six meals a day, and snack between meals to maintain a good nutritional intake.
- A feeling of swelling around the incision line, especially around the ribs. This is quite normal and relates to the build-up of scar tissue. In time the swelling reduces and eventually returns to a near normal.
- A continual ‘dull gripping ache’ and occasional sharp nerve-like pains around the incision line. At times this can be quite painful, especially if the person over exerts themselves, twists or lifts heavy objects. Pain can be managed effectively if needed. Consult your specialist nurse to find out more.
- Sleeping on the side of the incision can be uncomfortable for several months but eventually improves.
- Constipation! Immediately after surgery the bowel is slow to function properly so constipation is a common experience helped along by very effective laxatives provided on the ward. When at home, constipation can continue to be problematic. It may be caused by pain medication, however, boxes of laxatives supplied by the ward on discharge prove to be very helpful.
- At the other end of the scale, ‘dumping’ or diarrhoea, needing to go to the toilet at very short notice, is also common to most recovering patients for up to the first year and sometimes longer. Dumping usually occurs after eating too much food, or after eating food with too much sugar. It is possible to minimise dumping by carefully eating little and often and knowing how to limit sugar intake.
- Avoid eating stodgy foods such as white bread and red meats that are difficult to chew down. These can become partially stuck at the lower end of the new stomach causing discomfort around the sternum area for up to an hour after eating. Chewing carefully helps to avoid meal related aches and pains.
- If the sternum area becomes regularly more painful after eating, it may mean the pylorus valve at the bottom of the stomach has gradually tightened and requires an endoscopic ‘stretch’. This isn’t unusual. The procedure is quick and simple and provides instant relief. If you experience these pains speak with your specialist nurse.
- Acid reflux. For esophagectomy patients, because the ‘new stomach’ doesn’t have an upper valve anymore, if the person lies down flat straight after a meal food from the stomach mixed with acid can slide back up into the mouth. This can be very unpleasant. To avoid acid reflux it is important not to eat late, allowing three hours at least after an evening meal before going to bed. Also, sleeping up at a slight angle using extra pillows helps to stop acid rising in the throat. Gaviscon and Rennie are useful off the shelf chew tablets that help to counter acid reflux. If it becomes a regular problem, speak with your GP and ask to be prescribed ‘Omeprazole’, a very effective medication which controls acid production. Long term use of Omeprazole is commonly used by oesophageal patients.
- Acid reflux is less of a problem for patients who have undergone a complete gastrectomy. For gastrectomy patients, sometimes sitting down with both feet resting slightly upwards for twenty minutes can help to reduce discomfort after eating too much or having too much sugar.
- Excess insulin. The pancreas carries on producing insulin even though you are not eating the quantities that you used to do. For some people this can result in an overwhelming tiredness during and immediately after eating because your blood sugar is low. It is particularly noticeable if you eat a higher proportion of protein to carbohydrates. The feeling passes after about an hour or can be remedied more quickly by taking a couple of Dextrasol tablets. These tablets are available off the shelf in most chemists and are a handy thing to keep close by after a meal.
- Voice changes. On very rare occasions, the vocal cords can be affected by surgery and the voice softens. It usually returns to normal within a year but if not, treatment options are available.
31) How can I minimise post operative side effects?
Knowing about side effects is half the battle. Being aware of minor complications; aches and pains; diarrhoea etc. means you can be better prepared for them and be better prepared to act to reduce the effects.
Eating small portions of foods that break down or can be chewed easily is a good start. Not eating too late is also an important ubiquitous tip to help avoid acid reflux whilst sleeping. Question 30 above, deals with solutions and tips to some of the main side effects.
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Eating small portions of foods that break down or can be chewed easily is a good start. Not eating too late is also an important ubiquitous tip to help avoid acid reflux whilst sleeping. Question 30 above, deals with solutions and tips to some of the main side effects.
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32) Are these side effects life changing?
Yes, they are, but to a lesser degree than one might first of all imagine. In the big scheme of things, these are relatively small changes or sacrifices, given the alternative. And life can adapt and be enjoyed to the full.
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33) Will I have a big unsightly scar after surgery?
The surgical scars remain visible for a year or two, then begin to fade. After five years I can hardly see my surgical scar, only I know it’s there. The body is an amazing healer.
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Other Frequently Asked Questions
34) Can the cancer return after surgery?
Sadly, yes it can, however it is far more likely not to reoccur. But if after surgery, the pathology tests routinely carried out on tissues removed in surgery show that cancer cells are still present at the edges of the resected tissue, then there is a possibility that a small amount of cancer cells may remain within the patient. However, all is not lost by any means. Each patient in most cases will be advised to undergo further chemotherapy, which will almost certainly kill off any remaining cancer cells.
We know of patients, treated over fifteen years ago, who had cancer cells remaining after surgery, and with follow-up chemotherapy they are here today, alive and well.
It is vitally important to know the detail of the outcome of surgery and clinicians are best placed to advise on any follow-up treatment needed.
There is a small possibility that cells may multiply and spread despite follow-up treatment, but that is a bridge to cross in the very unlikely event that it happens.
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We know of patients, treated over fifteen years ago, who had cancer cells remaining after surgery, and with follow-up chemotherapy they are here today, alive and well.
It is vitally important to know the detail of the outcome of surgery and clinicians are best placed to advise on any follow-up treatment needed.
There is a small possibility that cells may multiply and spread despite follow-up treatment, but that is a bridge to cross in the very unlikely event that it happens.
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35) Having had this cancer am I more prone to developing other cancers?
The short answer is no. Having had an oesophageal cancer does not increase a person’s risk of developing other types of cancer.
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36) Can I carry on working?
It very much depends on the person, their job and the employer. If you feel well enough to work, then why not. The two main things that affected me, were fatigue and an inability to do anything physically taxing. Working in a stressful job or environment, with long hours, and commuting long distances can be very challenging. If you intend to, or need to go back to work, then do so on a carefully agreed and planned basis with an employer. Or if you are self-employed, plan your own return to work. Work part time at first, at home if possible, gently easing back into a more normal routine. If you do a physical job, you will need to carefully discuss the options with your employer. Or, if you are self-employed, for example a builder or landscape gardener, you will need to consider different ways of working; possibly having additional help at first.
Some folk decide to go for a complete change of career and quite successfully use the forced recouperation to think and explore other opportunities. It can be transformative.
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Some folk decide to go for a complete change of career and quite successfully use the forced recouperation to think and explore other opportunities. It can be transformative.
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37) If I have to give up work, can I seek financial support?
Yes. The best people to ask locally in Oxford are based at Maggie’s Centre, next to the Churchill Hospital. They have experts who can advise which benefits can be applied for.
Alternatively, contact your local Citizens Advice, and make an appointment.
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Alternatively, contact your local Citizens Advice, and make an appointment.
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38) Will this stop me from driving?
Only for the first few weeks after surgery. We advise you do not drive for six weeks. The first priority is not to be the cause of an accident, potentially hurting other people let alone yourself. Secondly, insurers will not cover a person just out of hospital straight after surgery. This could be extremely costly if there was an accident, irrespective of who is to blame. Obviously, not driving is a great inconvenience to many, but should be taken very seriously. Other arrangements will need to be made. After six weeks, call your insurers to tell them you are going to start driving again so that it is put on record.
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39) Can I be physically fit and do sports I enjoy?
Absolutely yes. It may take several months to get back into the saddle and ride fifty miles, or play two rounds of golf in a day, or run 10Kms or swim 100 lengths, but it is all possible. We are in regular contact with former patients who can do all of this. If you would like to be put in touch with them, drop me a line at WalledCottage@GMail.com.
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40) Can I travel, drink and have sex again!?
Yes, to the first, in moderation to the second and as much as you like to the third!
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