Richard's story

September 18, 2023

Richard's story

Don’t ignore symptoms, regardless of whether they are intermittent or not. We all know that the earlier a disease is identified, the greater the chance of survival. Don’t be disregarded by your GP. If you think you need a particular test, keep pressing for it.

In the second half of 2016, I started experiencing symptoms such as a feeling of acid reflux and a burning in my oesophagus, some difficulty in swallowing and mild chest pains. The symptoms were often transitory and did not cause me much discomfort. However, at my wife’s urging, I contacted my GP. He first decided that the best test was a chest X-ray. This took place and raised no issues. He was also focused on possible heart-related problems and followed up with an ECG. Again, no issues. The symptoms subsided, and I paid little attention to them. However, again, at my wife’s encouragement, I got the GP to organise a gastroscopy (which he should have done in the first place).

This took place many months after my initial approach to our GP, and it was immediately evident that there was a growth at the base of my oesophagus. A biopsy was taken, but it was very clear from the reaction of the hospital staff that there was an issue.

I found the follow-up from the Oncology team at Kingston Hospital to be surprisingly slow. It took some time for the biopsy results to be analysed, and there was quite a lag in further actions by the hospital. Fortunately, I had good private health coverage and quickly decided that this was the best route to follow (although some say that a big NHS hospital is the better place to have major surgery in case of complications). Searching online, we selected a surgeon and made an appointment to see him. This took place quickly, and from the information we had presented to him, he assessed the tumour as Stage 3.

After the initial consultation, I had a second gastroscopy and a PET scan. Chemotherapy commenced on 10 April, initially scheduled as six cycles, three pre-operations and three post. After positive results from the chemo (epirubicin/cisplatin/capecitabine), I was operated on at London Bridge Hospital on 28 July. My stay in the hospital was extended by a couple of weeks because I acquired an infection. Other than that, the process went smoothly.

In the event, the second round of chemotherapy was never completed. I started a fourth cycle, but this coincided with a recurrence of infection, which required a short hospitalisation. After discussions with both the surgeon and oncologist, I decided not to have any further chemotherapy. This decision was based on the assessment by my healthcare team that there was no clear evidence as to whether such treatment was beneficial or not.

The good news, post-operation, the surgeon stated, was that the adenocarcinoma he removed actually comprised both a benign growth and a malignant one, so the cancerous tumour was actually quite a bit smaller than originally assessed.

Subsequent to that, I have received regular CT scans, none of which have shown any evidence of cancer cells. After five years of regular scans and blood tests, I have been discharged by my surgeon and, with luck, will avoid any recurrence of this cancer.

Living without a stomach causes various problems. It is difficult to eat big meals, and one often feels uncomfortably full after only a few mouthfuls. “Wet” food is, in my experience, the easiest to eat; hard, dry foods are the most difficult. I have read that many specialists advise against drinking at the same time as eating. However, in my experience, drinking lots of fluid helps the food to go down the oesophagus.

I do experience sugar rushes occasionally, as well as various types of cramps in the intestines – but these pass. I took Creon tablets for many years when eating because I was advised that these would facilitate the metabolism of food. More recently, I have not bothered with these and have not noticed any difference! Overall, I guess I am fortunate that, for me, the long-term side effects of gastrectomy are pretty modest.

I would suggest that among the lessons arising from this experience are:

  • Don’t ignore symptoms, regardless of whether they are intermittent or not. We all know that the earlier a disease is identified, the greater the chance of survival.
  • Don’t be disregarded by your GP. If you think you need a particular test, keep pressing for it.
  • Be very careful to avoid infection when your immune system is depressed by chemotherapy.
  • If possible, pick an experienced surgeon. I was treated by James Gossage, an upper GI consultant at Guy’s and St Thomas’ Hospital Trust. I can’t praise him too highly for his dedication and support. By looking online, it is possible to see how many procedures each surgeon has carried out, together with success rates, etc.

The other point I would make is that the system doesn’t seem to effectively address the issue of post-operative care. Once the procedure has been carried out, the surgeon passes on patient management to the oncologist. I found mine to be perfectly pleasant, and he undoubtedly helped with one or two issues, such as nutrition management post-gastrectomy. However, in the absence of a recurrence of cancer, which would then require further treatment, the oncologist doesn’t really have a role.

Equally, the local doctor is unlikely to have relevant knowledge as to how to manage patients who have undergone a full gastrectomy. I have, I think, been fortunate in being able to cope with a gastrectomy without too much impairment of life quality, but there doesn’t seem to be much of a structure in place in the health service to help with this.

In the UK, the Oesophageal Patients Association is a useful forum for longer-term care, but I feel that there should be better formal structures in place to handle patients’ concerns and health issues post-operation and radio/chemotherapy on a continuing basis. Maybe a network of specialist clinics would meet this need.


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