A mammoth undertaking

They say you should always start a story in the middle, and boy did this one start that way!

I was initially diagnosed with oesophageal cancer on 14 December 2009. But it took over four months from the time I first noticed something wrong until I got the diagnosis. I’ll tell that story today, then I’ll write about the prognosis tomorrow and the treatment the next day.

Now that I have my diagnosis, I can pinpoint the start of the journey to mid-August, when I first visited my GP complaining that I was beginning to have trouble swallowing. At this, and at every subsequent visit I was palpated to find a sore spot — nothing particular — any jaundice? — no — loss of weight? — not more than expected from eating less — loss of appetite? — hard to separate from feeling full, but I wasn’t turning my nose up at food, so probably not. “Give it two weeks,” the GP said, “it’ll probably go away on its own.”

It didn’t, so I returned a fortnight later, went through the same routine with a different GP (it’s a group practice, so I might see any one of a few doctors at any visit) and came away with a tentative diagnosis of acid reflux and a prescription for a reflux suppressant.

Four weeks later the pain was worse, so the next visit’s prescription was for a small dose of a proton pump inhibitor. That stopped the acid stomach cold. But I was also given a Choose and Book appointment with a Gastro-Enterologist.

Sidebar: for those not in the UK, Choose and Book is a system in the NHS where you get the right to make an appointment with a specialist at a hospital. You can make your choice on whatever criterion you like, but one common trade-off, as it was in my case, is between proximity and earliness.

I chose the earliest appointment available, one hour’s travel away, for 16 November 2009. Meanwhile the PPIs were working fine, controlling any annoyance from the excess acid in my stomach. At this point the working hypothesis was that I probably had an ulcer.

The specialist asked the same questions, and got the same answers, but also took blood samples. As he could find nothing, he said that he would make an appointment for an endoscopy to see what he could see. I asked whether there was anything else he was considering. The endoscopy would allow him to rule out oesophageal cancer, he said. I noticed in his notes that he had requested the endoscopy appointment within 14 days.

12 days later my endoscopy appointment notice arrived, for 14 December. The accompanying notes said to stop taking my PPIs two weeks before the procedure. I went in panic to see my GP, who explained that if I were to carry on taking them, and the endoscopy found nothing to explain the acid, then nothing could be ruled out. If I could manage with just the reflux suppressant, then the endoscopy would be more valuable. That was a bad moment.

However, I had changed my diet after reading about ulcers and acid stomachs, and the new way I was eating helped considerably. The intervening two weeks were slightly uncomfortable, but perfectly bearable.

On the day itself Gillian, my wife, came with me in order to drive me home. An endoscopy involves putting a tube down the throat, which can trigger the gag reflex, so a sedative is often used. I have a strong gag reflex, so I was fairly sure I’d need the sedative, as indeed I did.

The specialist — the same one I saw earlier — was very busy that day, and things were running late. I wasn’t the last patient, so he was a little rushed when he saw me after I had recovered a bit from the effects of the sedative. Gillian was with me when he gave me the bad news. He made it clear that there was little doubt about the diagnosis and explained what would likely happen next. Just before leaving he said that he had other patients to see, but that we could wait and talk to him afterwards if we wanted to. I don’t remember this, but Gillian does. I’m not surprised, as I was still recovering from the effects of the sedative. We left straight away, in somewhat of a state of shock, so we didn’t talk again to the specialist.

This sounds a little like an account of a system gone wrong. It’s certainly not meant to be. Everyone I dealt with examined me carefully and diligently. Up until the diagnosis itself, there was little reason to think that cancer was the most probable explanation of my symptoms. The GPs at my surgery were particularly shocked, I understand, but on reviewing the case could not see that they had missed anything. I believe them. I was happy. My appetite was fine as far as I could tell. I had lost a little weight, but I wasn’t concerned about it as I was overweight tending to obese anyway. I had no signs of jaundice.

Tomorrow I’ll write about the tests that led to my prognosis.