Oesophageal Cancer – A Patient’s Experience.
- Symptoms and Diagnosis. (10 months)
The first symptoms were a mild dry cough and unusual burping -especially the latter. At this time there was no difficulty in swallowing. The symptoms were reported to the GP but follow up was very slow due to an unfortunate quirk of timing. COVID had recently burst onto the scene and endoscopies were the last thing that hospitals wanted to be involved with on patients who may be infectious. As a result many months went by in which the cough disappeared but the burping became worse. Clearly something was not right as swallowing certain types of food had started to become a problem and eventually after about 10 months, a private endoscopy was arranged. This revealed an oesophageal tumour 8 cm in length in the lower gullet.
- Further Investigations. (5 weeks)
These investigations were to find out more about the tumour. First, a CT scan was carried out by a local hospital. This gave an image and an accurate size measurement, which could be compared with later, scans after chemotherapy to achieve tumour reduction.
The CT scan was an important first step to assess the extent of the problem and decide whether surgery might be an option. In advanced cases this may not be a viable course of action but I was fortunate and was placed in the hands of an Upper GI Surgical Team at the Royal Infirmary Glasgow, a centre of excellence for this type of work.
The next step was to carry out a staging laparoscopy for further investigation.
I was admitted as a day patient and the procedure was carried out under general anaesthetic. This involves entering the abdominal wall with a camera-carrying probe, which examines the cavity to assess the extent of spread. It also allows a staging estimate to be made. In my case the tumour was considered to be at stage 3 which means that it had not yet spread but was well embedded in the oesophageal wall. Stage 4 would have been bad news, as spread of the cancer would already have taken place. The laparoscopy also allowed an estimate to be made of how many lymph nodes had been affected by the cancer. This was on reflection a really important part of the whole experience as it is at this point that the decision is made whether or not further curative treatment is realistic.
- The PET scan and fitness test (4 weeks)
Next, a PET scan was arranged. PET scanners are few and far between (just 5 of them in Scotland) but they can find potentially cancerous cells anywhere in the body. The patient is injected with a small dose of radioactive glucose, which spreads out in the blood stream. Actively dividing cells such as cancer cells have a huge appetite for glucose and show up as ‘hot spots’ on this scan, as pockets of radiation. Assessment of the PET scan results by the Interdisciplinary Team confirmed that surgery was a viable option in my case, so long as I was physically fit enough to go through the major operation involved at age 77. I was given an appointment at the Royal to have a fitness test. This involved basic measurements of height, weight, heart measurements and many lifestyle questions. Also, a lung test in which the patient has to forcibly exhale through a tube. The main part of the fitness test is to ride an exercise bike and maintain a steady speed of pedalling as the gradient is increased. Tubes connected to the mouth are measuring the breathing rate and the heart rate is also measured. Having completed the fitness test, I was passed on by the Surgical Team at the Royal, to the Oncologists at the Beatson West of Scotland Cancer Centre for the first Chemotherapy treatments.
- First Chemotherapy (2 months)
This round of chemotherapy is intended to stop the cancer from developing any further and to actually reduce the size of the tumour if possible. At the end of this treatment a CT scan will show whether any reduction has been achieved.
For oesophageal cancer a tried and tested course of chemotherapy called FLOT is currently the standard treatment. The letters stand for the following drugs being administered:
F- 5-Flurouracil (5-FU); L- Leucoverin; O- Oxaliplatin and T- Taxotere (Docetaxel)
These chemicals all play a part in destroying actively dividing cells such as cancerous tissue, but the action is indiscriminate and also leads to the death of many healthy cells. It can seem a crude instrument, which is accompanied by unpleasant side effects, and is a treatment feared by people who have not had experience of it.
The first step is to find out if the patient has a deficiency in an important enzyme called DPD. A blood sample is tested for the deficiency. In rare cases where deficiency is found an alternative drug regime has to be given.
The standard chemotherapy treatment consists of 4 consecutive fortnightly sessions. First, a PICC line has to be set up. This is a long tube inserted into the upper arm, which leads directly into a vein near the neck. This is a permanent feature for the next two months whilst the chemotherapy courses continue. At weekly intervals following the PICC line insertion a district nurse will come to the patient’s home to check that the PICC line is clear (by flushing it) and to replace the PICC line dressing.
Each chemotherapy session involves the following: Day 1, attend the hospital for intravenous drug administration which takes about 4 to 5 hours. The FLOT drugs enter the body through the PICC line. The 5-FU is provided over a 24 hour period so the patient goes home with a reservoir of 5-FU that is pumped in through the PICC line using a small disposable pump. Day 2, 24 hours later, a district nurse will come to the patient’s home to disconnect the reservoir and pump.
For the next twelve days, the FLOT drugs are doing their work whilst the liver gradually breaks them down to restore normality in the body. Two days before the next chemotherapy starts the district nurse will again come to the patient’s home to take a blood sample directly from the PICC line for analysis. This is to assess the extent to which the body has recovered from the treatment, especially in terms of blood cell counts. If the counts are acceptable, the next treatment can go ahead two days later.
- Chemotherapy Side Effects.
There are numerous side effects, which can be a daunting prospect. What follows is a personal account of this issue. When facing chemotherapy, I was told that there is no way to predict which side effects I would get or how severe they would be. Tiredness, nausea, diarrhoea, constipation, food tasting awful, tingling fingers and runny nose have all been experienced to some extent but are manageable. The tingling fingers are due to nerve damage caused by oxaliplatin and wearing warm gloves helps to counteract this sensation. Metoclopramide was found to be effective against nausea. Patients are given prescription medication to overcome nausea and diarrhoea which generally worked well.
Another medication whilst on chemotherapy is the steroid dexamethasone. This is taken over a 4 day period immediately before, during and after FLOT treatment. It helps to overcome the worst immediate effects of chemotherapy and especially aching joints and muscles, but can cause sleeplessness which I found especially difficult to manage and was forced to take sleeping tablets (Temazepam) whilst under its influence.
Not knowing how chemotherapy will affect the body is very unsettling but my experience suggests that it might be managed if a person is reasonably healthy (eg non smoking, not overweight, not a heavy consumer of alcohol, leading an active lifestyle). Attitude may also be important, taking each day as it comes and accepting that some days will be better than others. The worst spell is the few days after the dexamethasone treatment as the steroid is no longer there to assist, and the FLOT chemicals are still at a high level in the body (but you should sleep better!) In the days that follow, the liver is breaking them down and helping restoring normality by the end of the fortnight.
- Surgery and recovery (8 weeks)
After the four courses of chemotherapy, another CT scan is carried out to see whether the tumour has shrunk and by how much. (It is common for the shrinkage to be accompanied by an improvement in the swallowing experience during the chemotherapy. In my case I found that swallowing became somewhat easier towards the end of the second round of treatment.)
Then a date is set for the operation to remove the tumour. This would be about a month after the end of the chemotherapy. During these four weeks the patient is encouraged to recover from the chemotherapy and achieve a maximum level of fitness by eating well, getting plenty of sleep and taking exercise.
There are two ways of carrying out the operation.
- a) Trans hiatal (through the neck and abdomen) or b) Ivor Lewis approach (through the chest).
Whichever procedure is followed it is a major operation. I had procedure (a) and was in hospital for 11 days. The first few days was in a high dependency unit after which I was transferred to a recovery ward. The operation involves removing a portion of both the lower gullet and the upper part of the stomach and joining together the severed ends. This join is very fragile, and nothing can be eaten or drunk during the first few days. Then a test is carried out. A scan is taken whilst drinking a small amount of water. This will check for leakage at the join. In my case there was no leakage. After this a very cautious approach to eating and drinking can be followed involving only the softest of foods such as yoghurt and soft jelly.
- Post operation Issues
It will be some weeks before eating a normal diet can be resumed and even then care must be taken to avoid swallowing anything which may ‘stick’. All food should be well chewed before swallowing and then swallowed in small portions. As the join heals there may be a narrowing of the gullet for a while due to temporary swelling of the tissues as they heal at the join. It may be necessary to have the gullet wall stretched slightly to ease swallowing. This is done by an endoscopic procedure.
Acid reflux can be a significant problem after the operation. As there is no longer a sphincter separating the gullet from the stomach, there is no barrier to stop stomach acid from travelling back towards the mouth. During the day when the body is upright this does not tend to happen but at night when lying on a bed it can be a very unpleasant experience. A standard remedy is to lift the head end of the bed up by 6″ or more, so that gravity helps to keep stomach acid in the stomach. But in my experience, this was not sufficient. Taking a regular moderate dose of proton pump inhibitor such as ‘Omeprazole’ is also standard therapy but again, it did not prevent me being woken up at night due to acid reflux. The deeper the sleep the longer the acid is in contact with the soft gullet tissue -we are talking seconds here, not minutes and the longer this takes place, the greater the effect -in a typical case it feels as if one’s throat is on fire. In an extreme case, stomach acid in the mouth can result; a very unpleasant experience. When this happens it can cause severe coughing due to ‘tickling’ sensations at the back of the throat. Coughing does not help however and should be resisted as it just makes things worse.
How to deal with it? Sit up and drink plenty of water. Take an anti-acid medication such as Gaviscon or Peptac. I discovered that eating a ripe banana or two is an additional remedy which helps, but it can be a case of bolting the stable door after the horse has departed -the damage is done and returning to bed may not be possible for an hour or more while the discomfort subsides. A couple of paracetamol tablets speeds this up by relieving the throat pain. Clearly, acid reflux has an impact on quality of sleep though it has amazed me how adaptable the body can be to such things. Napping at suitable moments during the day can make up for sleep loss at night.
The best solution to the reflux problem I have found is to create a mound of very firm pillows (or cushions) at the top of the bed and lie against this to keep the head more or less inclined whilst lying down. It’s not a natural way to sleep but it works so long as the position is maintained. If this method is to be used, a wooden box of suitable dimensions needs to be put in the bed between the feet and the bed end. This can be pushed against by the feet to prevent slippage off the pillow support.
Given time the reflux problem sorts itself out. The body seems to realise that it’s not a good thing to be happening and deals with it, but this takes some months.
- Second Chemotherapy. (2 months)
For the best effect this should be started within 8 weeks of the date of the operation. The purpose is to mop up any cancer cells which may have found their way to other parts of the body. The procedure is as before, -four fortnightly FLOT treatments. Because the body has only just recovered from the stresses of the operation, this second round of chemotherapy is said to be more challenging than the first and I found it to be so.
However, side effects this time were not quite the same. I didn’t seem to feel fatigue so badly. Food tasting unpleasantly different was a feature of the first round and this side effect was even more marked with the second chemotherapy. It was difficult to find anything that tasted nice so there was a loss of appetite, but strangely, hunger could still be felt.
Lactose intolerance is another issue which made it known during the second chemotherapy. This caused nausea after consuming milk or milk products but again the Metoclopramide tablets were helpful in its control. Tolerance comes back a few weeks after the chemotherapy finishes.
The dexamethasone was taken as before over a 4-day period, but this time, use of sleeping tablets to overcome the insomnia was not possible because an attack of acid reflux in the middle of the night when deeply asleep is something to be avoided for the reasons explained above. Add to this, the fact that steroids have a stimulatory effect on acid production itself, and it will be clear that this 4-night period can be something of a trial -but better to be prepared for it than not.
A few words about hair loss. It certainly does happen, especially from the scalp. It’s a personal matter as to how this should be approached but my way of dealing with it has been to wear a head covering -a fisherman’s beanie, to avoid alarming the grandchildren and also to keep the top of the head warm. The hair grows back again after the chemotherapy has ended but is finer in texture.
Finally, a word of warning about Internet searches. Be cautious if you are tempted to seek information in this way and put your trust in credible sources. At the end of the day, any patient going through this experience has to make the best of it that they can, taking each day as it comes. A final word of advice is to aim to lead as normal a life as is possible through these difficult times -with a positive mental approach, it may be a surprise to discover how normal that life can be.
Thanks to David for submitting his personal journey to the OPA.