Ed, age 34 when diagnosed, inoperable adenocarcinoma of the head of the pancreas

Cancer diagnosis and treatment in Italy

Three years ago I sold my studio flat in Putney and moved to Umbria with my girlfriend Michela. After renting for a few months we bought a medieval ruin five miles from Todi and set about restoring it. Somehow, amongst the chaos of scaffolding poles, spilled concrete, bulldozers etc, I managed to slip away and register with an Italian GP. At the beginning of this year, with Michela now my wife and with a baby boy, James, added to our family, I needed to visit my doctor for the first time.

I had never met Dottor Alvi before, nor had anyone recommended him to me. When you register with the Italian Health Service (Sevizio Sanitario Nazionale), they show you a list of all the doctors in your area and invite you to pick one. My Italian pronunciation wasn't up to much at the time and Alvi was the shortest name on the list.

He was a big, fat chap with a walrus moustache - instantly likeable. He sat me down and began chatting. Where did I live? Ah, Pesciano - lovely village - did I know the Olivieri family down by the river? And why Umbria? And what work did I do?

After ten minutes I felt I owed it to my fellow invalids in the waiting room to cut to the chase: Doctor, I've been having stomach pains for the last couple of weeks. Nothing serious but they don't seem to go away. Fine, he said, relishing a new case, and gestured me over to the examination table.

Liver's a little fatty, he said, pressing his massive fingers under my ribs. Stomach feels normal. Colon's fine. He listened to my lungs and took my blood pressure and did all the other normal checks. Overall I was in perfect health. Diagnosis: indigestion. He scribbled a prescription for an over-the-counter tablet (Maalox) and walked me to the door. You're in perfect health, he repeated as he shook my hand. Come back in fourteen days if you still feel bad, but I don't expect to see you again for ten years.

Unfortunately, fourteen days later, I had to go back. As well as the intermittent stomach pain, I also had a bit of constipation and prolonged burping sessions especially after dinner. Generally I felt fine but I knew that somewhere in my guts all was not well.

My new diagnosis was Suspected Gastritis (a medical catch-all for tummy trouble). I was prescribed a stronger tablet and booked in for a gastroscopy. At this point in Great Britain you would start waiting. And then at some point in the future you would be contacted by a hospital to tell you to come in on a certain day for the exam.

In Italy it's different. Doctor Alvi printed me a prescription form with the word gastroscopia on it. I then took the form to my local hospital in Todi and presented it at the booking office. The booking clerk tapped his keyboard a couple of times and immediately began offering me choices. I could come back in eight days (eight days!) and do the exam in Todi, or if I was in a rush they had a slot in Perugia at the end of the week, or if I preferred Terni (a large teaching hospital), I would have to wait a fortnight. This is similar to the "Choose and Book" system being introduced in Britain, with the difference that in Italy, regardless of where and when you book your appointment, you will be seen almost immediately, even if the exam is not urgent.

There is a catch however. In the UK, NHS health care is free at the point of use. In Italy you pay a "ticket" - a nominal fee for exams and blood tests done as an out-patient. My gastroscopy cost me €36.15, equal to 70,000 lire, about £25. The true cost, including the participation of a consultant gastroenterologist and two nurses, is clearly much higher, but despite the subsidy, the fee is high enough to discourage hypochondriacs from undergoing a series of unnecessary check-ups. Pensioners and children from low income families don't pay the ticket and all in-patient care, long term care and care during pregnancy is free. Consultations with your family doctor are also free. Any ticket costs you do incur are tax-deductible.

I chose to go to Todi and pitched up with my wife at 8am. The consultant chatted to me for a few minutes about my general health and what would happen during the procedure. Then a nurse led me through to an operating table to get ready. She placed an IV needle in my arm in case I needed a sedative at some point, then she inserted a plastic frame into my mouth to stop me biting on the endoscope. The endocope is a black plastic tube the width of a garden hose containing a fibre optic cable and a channel for threading through instruments. It's connected up to a camera which feeds pictures to a video screen.

Just before the tube went in, the nurse sprayed the back of my throat with an anaesthetic to deaden my gag reflex. The camera was switched on and I could see myself and the rest of the room on the screen. The consultant moved in and now I could only see my own face, then my mouth, then the plastic frame, and then my uvula dangling down at the back of my throat. The consultant told me to swallow, and just as I did he gave a good push ensuring the tube went down my oesophagus not my windpipe.

With the tube now filling my throat I was suddenly overcome with the desire to wretch. Somehow I managed to hold myself together. I stopped watching the screen and clenched my eyes shut for a few seconds, willing myself to ignore the life-saving urge to vomit up the foreign body working its way down into my stomach.

Once the tube stopped moving I was able to look up again. The doctor was feeding a cable into the back of the endoscope. After a few seconds I saw it emerge on the screen. He then yanked on a trigger and a mean-looking claw opened out at the end of the cable. He guided the claw to the wavy folds of my stomach wall and pinched off a piece of tissue. This was rapidly drawn back up the tube and the sample deposited in a small vial of clear liquid. The process was repeated a second time from a different part of the stomach. This time I noticed blood leaking out of the wound site, but I couldn't ask about it, because my mouth was stuffed full of medical apparatus.

The endoscope then proceeded downwards, through the valve at the bottom of the stomach, and into the first part of the small intestine. It was like watching that film where scientists are miniaturised and go on a voyage inside someone's body. But abruptly the journey came to end and everything flashed by one more time as the tube was drawn back out of me.

I asked about the blood and the doctor said it was normal and nothing to worry about. He gave me the vial with my two flecks of stomach lining in it and told me to take it home and look for a colour change. If the liquid turned red within 12 hours it meant I had a helicobacter infection - a very common cause of gastritis and easily treated with antibiotics. He also gave me a letter, summing up what he had observed. My stomach and small intestine were fine - no ulcers or others abnormalities, but I did have some low grade lesions on my oesophagus caused by acid reflux. I also had a slight hiatus hernia in which a small part of the stomach pokes through the hole in the diaphragm (called the hiatus) thus interrupting the proper function of the valve at the top of the stomach which is designed to prevent gastric juices escaping up the gullet.

He recommended a type of drug called a "proton pump inhibitor". Unlike the antacids I'd been on up to that point, which work by neutralising the acid already produced, these drugs actually inhibit the production of acid in the first place. They greatly reduce the pH in the stomach and allow the oesophagus to heal itself over a couple of weeks. As for the hernia, he said it was extremely common and rarely need operating on. Everything should resolve itself with the medicine.

The next day I went to see Alvi. He agreed with everything in the report and prescribed me esomeprazolo tablets to cut my acid production. He had seen this acid reflux diagnosis many times before and assured me I would start feeling better almost instantly with the new drug.

But sadly the gastroscopy turned out to be a terrible red herring which cost me several weeks. Looking back, the problem is clear: a consultant gastroenterologist is called upon to examine an apparently healthy young man. Everything looks fine, except for some minor irritation in the gullet and a very slight and extremely common hernia. However, the patient is not feeling a hundred percent and the consultant feels obliged to draw attention to what he has seen as a possible explanation for the symptoms. The patient and his GP are delighted. They have been searching around in the dark for a couple of weeks without success. Now they have an apparently clear cut and definitive diagnosis. They naturally fixate on the consultant's remarks and eliminate all other lines of enquiry.

I took the new tablets for two weeks. Initially I felt better and was sure we had cracked it, but after a few days the symptoms returned. I had to go back to Alvi again. He was very surprised and put me on rabeprzolo, a similar, but even stronger acid inhibitor. He also prescribed me some tablets for my burping which are amusingly classed as "anti-meteorics".

At this point, I began to feel I needed to take a more active role in my recovery. I was still going to work as a teacher every day and was generally well, but my symptoms were making life unpleasant and I knew that my current treatment was not working. I looked up gastritis and acid-reflux on the NHS Direct website and did some general research into stomach pain. Everything that doctor Alvi had tried seemed to fit the standard procedures applied throughout the world. But then I noticed something new. Apparently the symptoms of stomach cancer were almost identical to those of gastritis and the disease often went undiagnosed for months while more innocent explanations were pursued. For the first time it dawned on me that I might have cancer and I immediately thought of my wife and our new baby. I broke down in tears imagining James growing up without a father and Michela struggling to make ends meet as a single mum. But then I thought back to the gastroscopy. If I had stomach cancer then why hadn't a tumour been spotted. I'd been told my stomach was fine. It was only the oesophagus that showed any signs of damage.

It was back to the drawing board and back to Alvi yet again. The stronger tablets were making no difference and I was beginning to experience new symptoms. I had lost a bit of weight and was having some lower back pain. Alvi said the back pain was nothing to do with my illness, but that the weight loss was a concern. Having explored the top end of the digestive tract he decided it was time to approach things from a different angle. I was to keep taking the acid inhibitors but was also booked in for a colonoscopy (€36.15 again). He thought I might have colitis and asked me if I'd been under a lot of stress recently. As a precaution he also ordered a comprehensive battery of blood tests including hepatitis (€51.38) and an abdominal ultrasound (€28.15), but emphasised that this was hardly necessary and that there was no rush to have it done. I went straight to the hospital and booked the blood tests for the next day, the colonoscopy for the following week and the ultrasound for the end of the month.

The blood tests all came back fine, so my next hope for an answer was the colonoscopy. In preparation for the exam I had to drink vast amounts of tangerine flavoured laxative on the three proceeding days and give myself an enema on the morning of the exam itself so that I arrived with the world's cleanest colon. The same team of nurses greeted me at the hospital and prepped me on the same operating table. The endoscope used is very similar to that used in the gastroscopy. In fact I was slightly concerned that it might be exactly the same one. That is, until I saw the length of it. It must have been five metres long. The doctor walked in with it looped around his shoulder in great coils, looking like a cowboy getting ready to rope a steer. Before I could ask if he was planning on using the whole thing, a nurse poked a lubricated finger up my bottom and the tube followed right behind. To start with I felt some mild discomfort, but this soon turned into pain. The colon goes up the side of the body, does a ninety degree turn, comes across the top, then turns down again before joining the small intestine or duodenum. At each of the turns, the doctor had to twist the endoscope around like an augur being used to unblock a drainpipe. At the same time the nurses pressed down on my belly to redirect the head of the endscope into the next section of intestine. During the gastroscopy I'd been brave and resisted the temptation to have a sedative, but now I called for it. The endoscope was much deeper into my body this time and the pain was constant. Within seconds the room went fuzzy and the pain subsided.

When it was all over my wife came in to listen to the doctor's comments in case I forgot them while still under the influence of the sedative. Basically everything was yet again fine. My colon was on the long side and quite folded, hence the pain during the exam, but it was completely healthy. They had removed one tiny polyp for analysis, but there was no suspicion that this was a cause for concern. Essentially, the whole procedure had been unnecessary.

I reported back to Alvi the next day. He was glad that I was in the clear but concerned that we still didn't have a solution. He mentioned stress again and said that I looked worried about something. I told him the only thing I was worried about was my illness. I was a little defensive because I thought he was suggesting that I was making the whole thing up. Yet he wasn't the only person to question whether my problems might at least in part be mental. Friends began to wonder if my worrying wasn't exacerbating my symptoms. One woman even went as far as to say that the whole thing was probably all in my mind. This made me angry, but I didn't say anything because I didn't have an alternative explanation. Perhaps they were right after all.

However, my symptoms were very real and by now they were getting stronger. The occasional back pain I'd been having over the previous few weeks had become a daily, or rather nightly, occurrence. I would go to bed with no pain at all and manage to sleep for a couple of hours, but then I'd wake up with a throbbing in my lower back either side of the spine. At first I assumed this was a pulled muscle and tried to treat it with Deep Heat balm and a couple of painkillers. The bedroom stank like a locker room, but the pain wouldn't go away. The only thing that seemed to work was to get out of bed, creep downstairs and do twenty circuits of the living room until the pain subsided. But soon I found myself having to stay on my feet for at least an hour. Sometimes I'd put on my dressing gown and go off for a walk around the village at three in the morning. Or I'd switch on the computer and kill an hour or so getting thrashed at chess. Basically I found myself having to spend more and more time in a vertical position. I tried sleeping in armchairs or on the sofa, but inevitably I slouched down and the pain came back. It got to the point where I was lucky to get more than three hours sleep a night.

My digestion had also worsened. I had to start taking laxatives to stimulate my increasingly infrequent bowel movements. But more worryingly, when I did go I noticed that my stools had taken on a strange fatty appearance with normal matter interspersed with a translucent jelly. My appetite started to dwindle and despite Michela making me nothing but fresh, healthy meals, I found myself becoming suspicious of any food that might possibly upset me. I even arranged through Alvi to do a second "breath test" for the stomach bacteria helicobacter in case the biopsy had somehow missed it. I was continuing to lose weight. Initially this had seemed to be the only good thing to come out of the illness, as I had been a little on the heavy side, but now I was dropping a couple of pounds a week and things were beginning to get out of control.

My final hope came at the end of March. I was the last person waiting in a deserted ultrasound department. It was dark outside and the radiologist looked like she'd had a long day. She squirted some conducting gel onto my tummy and began working the sounder over my skin. It reminded me of when Michela was pregnant with James. The exam is designed to give a general overview of all the abdominal organs from the oesophagus down to the kidneys and the bladder. It's meant to last around half an hour, but within seconds I could see that she had spotted something. She made a telephone call and a couple of minutes later an older man walked in and began watching at her side. They nodded to each other without speaking. I couldn't bare it any longer and asked what it was that had drawn their attention.

There were actually three things: I had a four centimetre mass on the head of my pancreas. I had several marks on my liver and I had a pocket of liquid floating under my liver. I asked, somewhat optimistically, if she thought it was serious. She said it could be a tumour, or it could be something completely harmless. The pancreas is hard to see on an ultrasound because it's hidden behind the stomach. But I needed to be admitted to hospital as soon as possible to run some more conclusive tests. She wrote up a letter for Alvi and saw me out with a sober farewell.

I had been alone for this exam and as I drove home through the dark to my wife and son my emotions were see-sawing between relief and despair. I was relieved to have finally pinpointed the source of my pain, proving that my symptoms weren't simply a figment of my imagination. But I was also deeply shocked at the possibility of having cancer. It wasn't a complete surprise, because I'd already dealt with some of the ramifications when I had mistakenly thought I might have stomach cancer. Nonetheless it was a severe body blow and I had to hold myself together to avoid driving off the road. When I got home I told Michela everything but made sure to emphasise what the radiologist had said. It could be a tumour or it could be nothing. For the next few days we clung onto this hope.

After supper I connected to the internet, went to Google and typed in "pancreas" and "cancer". An hour later I'd learnt all I needed to know. The pancreas is a chilly pepper shaped organ with a head, body and tail. It's 15-20cm long and lies horizontally behind the stomach near the spinal cord. It has two functions: to produce digestive enzymes which collect in a duct and pass into the small intestine to help break down carbohydrates, proteins and especially fats; and to make hormones, including insulin, which regulate blood sugar levels. Cancer of the pancreas is the tenth most common type of cancer in the UK, accounting for around 3% of all cancers. About 6,000 new cases are diagnosed each year, spread fairly evenly between men and women. Most victims are over sixty. Victims under forty are extremely rare. I am 34.

A pancreatic tumour is normally found on the head of the pancreas and is considered the deadliest form of cancer you can have. Eighty per cent of patients die within a year of diagnosis. Ninety-seven per cent die within five years. There are three reasons for these grim figures:

1. As I had found out for myself, diagnosis of the condition is often made late because the symptoms are so vague. Sufferers typically waste months down blind alleys, pursuing more obvious explanations for their symptoms.

2. You have to catch the cancer very early to operate on it and have any chance of a complete cure. Four out of five pancreatic cancers have metastasised (spread) by the time they are discovered, normally to the liver via the lymphatic system or the common blood vessels. An operation is out of the question.

3. Pancreatic cancer is poorly understood and the current treatments cannot cure it. At best chemotherapy and radiotherapy can add a few months to a patient's life expectancy.

The next morning I went to see Alvi with the ultrasound results. He called the hospital and arranged for me to be admitted the following day. He gave me his personal mobile number and told me to call him anytime. He seemed devastated. I don't think he felt guilty about having missed the diagnosis. I think he was just concerned. I certainly didn't hold him responsible for the delay. I think he followed all the correct procedures. Perhaps the back pain was a missed signal - the radiologist said it was produced by the tumour pushing on the nerves in the spine. Perhaps I should have done the ultrasound sooner. But when someone in their thirties walks into your office and tells you they have tummy trouble, you don't jump up and say, My God - It must be pancreas cancer!

The next morning was a Saturday. We arrived at Todi Hospital at 8am and went up to the first floor. A nurse assigned me one of only twenty beds and was kind enough to put me in what turned out to be the only private room. Michela stayed for a while, but we didn't really know what to say to each other. I was convinced I had cancer, but we didn't know for sure. The next few days would be full of tests that would finally tell us if life was going to be temporarily disrupted or completely wrecked.

Things started in earnest after lunch. A nurse came and took seven vials of blood for analysis. A second nurse wheeled in an ECG machine and connected up the various clips and suckers to check out my heart. In the evening I had another ultrasound to confirm what had already been seen two days before.

The next few days included an MIR and a CAT scan, urine and faeces samples and finally the all important biopsy. For this simple but delicate procedure I was taken into an operating theatre where a surgeon re-examined my pancreas and liver with an ultrasound machine. His colleague administered a local anaesthetic to the middle of my chest and then two shockingly long needles were produced. Using the ultrasound as a guide, the surgeon inserted each needle below the breastbone then worked it up towards each organ where he removed a tiny sample, all the while being conscious not to puncture the sac of fluid lying below the liver.

The various tests kept me occupied during the day, but at night the back pain would return, forcing me to pace up and down the corridor into the wee hours while my fellow inmates snored away in their beds. At first, I was prescribed giant aspirins the size of casino chips, and when these didn't seem to be helping I was given foul-tasting and equally ineffective drops just before bed. Finally they put me on pethadine injections. It was my first contact with an opiate and I was hooked. A young male nurse stuck the needle in my buttock and within two minutes I was floating. I slept for five hours straight and work up deeply refreshed.

When it was time for me to go I asked the Primario (head of department), Dottor Biscottini, what the tests had revealed. He was strangely coy and said we couldn't be sure until the biopsy results came back in ten days. For now it was best to wait. He gave me a prescription for more pethadine and said no more.

By this stage we were beginning to fear the worst. Why were the doctors not more forthcoming? It could only mean bad news. My in-laws came down and tried to reassure us, but I was feeling pretty awful, even with the pethadine. A couple of days after being released from hospital, Michela went to Alvi to pick up some repeat prescriptions for me. She told him of our frustration at being kept in the dark. He was shocked. He'd been in contact with Biscottini at the hospital and seemed a lot better informed than us. All the tests I'd done pointed to cancer. It was a 99% certainty. The blood markers were particularly conclusive. His parting words were simple: get ready to leave Umbria as soon as possible. Go to Bologna, go to London, but don't stay here.

We took him at his word and started packing immediately. Being English, I had a tough decision to make. Should I go home and seek treatment in the UK or stay in the country where I'd made my home. In the end I decided to stay in Italy. For one thing, I didn't think I'd be entitled to NHS care any more, and besides, despite Alvi's warning about Umbria, I wasn't convinced that I would automatically receive better care in Britain. And most importantly, Italy is my home now and I saw no reason to abandon it in an ex-pat panic to return to the familiar.

My mother-in-law Renata had been diagnosed with breast cancer the year before. She was treated at COM (Centro Oncologico Modinese) a cancer hospital in Modena, 20 minutes from where they lived. We decided to go to the same place. Alvi printed us a referral and we drove up the next day.

Twenty-four hours later we were sitting in a meeting with an oncologist (Dottoressa Di Emidio) and a professor (ygygkygkgkgk). They reviewed my notes from the hospital tests and rapidly arrived at a proposal. Assuming the biopsy confirmed a malignancy, they would put me on six cycles of chemotherapy. On day one of each cycle I would come into the hospital and be infused with cortisone and an anti-vomit drug, before receiving 30 minutes of gemcitabine and two hours of oxalyplatin. The first chemo drug is used throughout the world and is generally well tolerated. The second, which contains platinum, is much newer in the treatment of pancreatic cancer and has a host of side effects including nausea, headaches, energy loss, intolerance to cold, loss of sensation in the finger tips and toes, burning of the vein in which it is infused and digestive problems. Yet despite these consequences, it was the only drug that offered even a minimal chance of shrinking the tumour. On day seven of the cycle I would come back in for the first three drugs only, then I would have a two week break to recover before beginning the next cycle.

For now an operation was out the question because the cancer had spread to my liver. As for my age, they said it worked both for and against me. Being young meant I would be able to tolerate high doses of chemo better, but it also meant that my more active cells would encourage the cancer to grow.

We started treatment two days later and to begin with it was truly awful. Looking back now I can see that I was very close to death at that point. I looked like a POW camp survivor. I had lost 22kg (three and a half stone), I was hardly digesting anything I ate, my back was agony day and night and the cancer was rapidly accelerating its assault on my body. As well as the chemo, my new doctors put me on capsules of pancreatic enzymes harvested from pigs. These replaced the digestive juices that my pancreas should have been making and helped me to start getting calories and nutrients from my food again. I was also prescribed some slow release morphine tablets that took away the back pain for 12 hours at a time. These have turned out to be a miracle and replace the short acting and inconvenient pethadine injections given to me in Umbria.

Like most cancer patients I'm on a variety of other drugs: Twice daily laxatives to counteract the constipating effects of morphine, cortisone tablets to help boost my blood platelets between chemo sessions, a stomach protectant to counteract the cortisone, a diuretic to reduce the fluid build-up in my abdomen, vitamin and mineral supplements, injections to boost red and white blood cells after the chemo and a special mouth wash to prevent blisters. I've now just finished my sixth cycle of chemo and although it has been very hard at times. The results seem to be good. A CAT scan half way through the treatment showed that the marks on my liver are retreating and my cancer blood markers have dropped to almost normal levels. However, the main tumour on the pancreas still remains and we are awaiting a new CAT scan to show us the way forward.

Looking back over the experience so far, would I have been better off in Britain? On balance I don't think so. Italy is not perfect. I find the reluctance of doctors to volunteer information frustrating. But most other things work as well or better than under the NHS. The latest drugs are available more readily here. Herceptin, which has only just been approved by NICE in the UK has long been part of standard treatment here. I also like the "choose and book" system for diagnostic tests. Perhaps the NHS version will evolve into something equally patient-friendly.

The provision of pharmaceutical drugs is also a little different in Italy. Instead of paying a fixed charge at the counter, some products are completely free (mutuabile) and others incur the packet price. The free drugs tend to be those are needed to cure an illness, while the chargeable drugs are basic products for relieving symptoms, like aspirin or cough syrup. On balance, there is probably little difference between the relative costs of the two systems to the patient over the long term.

Perhaps my biggest reason for wanting to stay here is the culture of co-operation between doctor and patient. I find it hard to imagine GP's and consultants giving out personal mobile numbers in the UK. We are hoping to move back down to our home in Umbria shortly and the staff in Modena are doing all they can to smooth the transition and see that I can continue my treatment in the place of my choice.

As in Britain, the quality of care varies from place to place, indeed it often comes down to the individual nurse or doctor who you see on a particular day, but for anyone contemplating a move to Italy and wondering about what they might do should a serious illness befall them, I would say this: don't automatically assume that you need to rush back to the UK. In many respects you are better off staying put.

editor's note: In the UK some patients can get free prescriptions. If not eligable for free prescriptions you can purchase an annual prescription card for about £100 which can be a substantial saving if you are getting nutritional supplements and a multitude of different pain killers, pancreatic enzymes and other medication. see NHS leaflet on charges and information on prepayment. In UK as in Italy doctor/patient relationships vary greatly and also depend on whether you are an NHS or private patient. You should always have an out-of-hours contact number which may be an on-call oncologist or GP and there should be a single point of reference or keyworker who is normally the Upper GI or pancreas specialist nurse. If you haven't been given a keyworker contact ask for one as the guidelines say they should be available. Unfortunately the vital specialist nurse posts are threatened by need for trusts to cut costs or lack of additional funding from PCTs for the new regional pancreatic cancer specialist centres. It is also worth ensuring that the outofhours GP cover have specific instructions from your own GP about the nature of your disease and state of health - especially if you are responding well to treatment.