Les Niewiara, age 43 when diagnosed, operable adenocarcinoma of the head of the pancreas

In November 2003, I was diagnosed with Pancreatic Cancer. Below you will find my story of how within the space of 7 weeks, I went from being a fit and healthy 43 year old to a post-operative Pancreatic Cancer patient.

As already mentioned, prior to October 2003, I was a fit and healthy 43 year old. 2 / 3 hours of good level squash every week and 1 hour of 6-a-side football kept me very fit and in good shape. Family activities with my partner Sue and our 2 daughters (10 & 9), also helped as they were mainly based around the outdoors - hill walking, camping etc. Indeed, in August 2003, we had spent 2 weeks in the Pyrenees walking up some decent sized mountains. A vegetarian diet, low in fat, also helped keep me in good shape. I have never smoked - too much into sport to ever want to. Regarding alcohol, consumption when at university > 20 years ago was, well, 'student like'. Since then, it has steadily diminished, and since returning from Brussels 10 years ago, I would say that my weekly consumption has been < 10 units. In my previous 43 years, I had only ever been to hospital for sports related injuries, and to a large extent, I was a stranger to the GP's surgery.

Overnight, however, this was to change...

Symptoms and diagnosis

In early October 2003, I had a 3 day bout of what at the time, I assumed to be food poisoning. I felt some discomfort in the lower abdomen, lost my appetite and had diarrhoea. 3 days after recovering, I noticed that my urine had suddenly become very dark, and my stools had 'decoloured' and become white. Drinking lots of water to dilute the urine had no effect. One week after the initial symptoms, on advice from my sister who works in a hospital laboratory, I paid my first visit to the GP. He immediately identified that I was jaundiced and arranged for some blood tests to be taken. The GP indicated that the jaundice was most likely connected with some form of viral hepatitis.

Whilst waiting for the results, I started to become noticeably yellow (skin and whites of my eyes), my skin started to become very itchy and my energy levels started to lower. 10 days after the tests, the results dismissed hepatitis A, B or C. The GP was still convinced that it was viral and ordered more tests. By the time the 2^nd test results had come through, my skin had become unbearably itchy due to the jaundice. This was having a detrimental effect on my sleep that was now being severely disrupted.

Again, the 2^nd test results indicated no evidence of viral hepatitis, but still the GP was convinced that this was the likeliest cause. Obstructive jaundice was 'dismissed' as an option due to the GP considering me to be "too young". However, after these 2^nd set of results, he arranged for an ultrasound scan and further blood tests to be carried out at the local hospital.

By the time of the scan, which was now early November 2003, exactly 1 month after the 'food poisoning', I had had to stop work due to complete exhaustion due to a lack of sleep compounded by long hours working on a project that was nearing completion. I had also noticed a visible loss of weight: ~12 lbs (5kg) in 1 month despite no loss of appetite. During the course of the scan the radiographer (technician) clearly saw something irregular, and called in a radiologist (doctor) to confirm. When pressed by Sue, the radiologist confirmed that she could detect something blocking the bile duct, and outlined the range of possibilities (gallstones to tumour). Because of this, the radiologist indicated that the ultrasound scan report and blood test results would be with the GP the next day.

The next day, the GP confirmed that the scan had revealed a blockage of the bile duct, but the GP still felt the possibility of a tumour was very remote because of my age. However, in order to investigate further, he indicated that he would refer me to a specialist gastroenteritis unit, and that I should expect the appointment through in a few weeks. Sue expressed very strongly her concern at this timing in the light of the diagnosis, and insisted the GP phone the unit whilst we were in the surgery to try and get a quicker appointment. Under pressure, he did this and an appointment was arranged for the next clinic the following week.

The following week at St. Mark's Hospital in Harrow, the examining doctor in the gastroenteritis clinic confirmed that there was indeed a blockage, and indicated that it was probably due to a tumour which could either be malignant (cancerous) or benign (non-cancerous). He immediately booked me in the next day for an endoscopic procedure so as to carry out further examinations, and to insert a stent (small pipe) into my bile duct so as to relieve the jaundice which by now had led to my skin being totally unbearable and my energy levels very low.

The endoscope procedure was carried out the next day, and the immediate results indicated that the blockage was consistent with an external tumour and that the 'shape' of the tumour (unsmooth) was consistent with it being malignant (cancerous). The stent had not been inserted as they wanted to carry out a further procedure - a CT scan the next day, and they felt that the insertion of the stent might compromise the results. The consultant in charge also indicated that in all probability they would have to refer me to a specialist hospital in Hammersmith.

The CT scan confirmed the previous procedures and confirmed the decision to refer me to Hammersmith Hospital. My notes and test results were couriered over to Hammersmith (on Friday evening), and I was told that my case would be considered at their Monday morning medical meetings, and that I should await a call from Hammersmith indicating when they would require me for tests.

The following Monday morning at 9.20am, which was now November 17 2003, I received a call from Hammersmith Hospital asking me to check into the ward by 2pm that day...

Hospitalisation and surgery

By the time I had arrived in Hammersmith Hospital, I was still severely jaundiced, and I had had no treatment to relieve the symptoms, apart from some ineffective anti-itch tablets prescribed by my GP. I had also lost around 16lbs (7kg). The first contacts with the doctors in Hammersmith indicated that they wanted to carry out a number of tests during the week to establish the nature of the blockage.

The first procedure was another endoscope examination to review the nature of the blockage and to insert a stent to relieve the jaundice (by this time, my bilirubin level, an indicator of the amount of bile within my system and the cause of the yellowness, was over 300 (normal range: 18 - 30), and was therefore approaching potentially dangerous levels. The following day, another CT scan confirmed the St. Mark's report of a tumour in my pancreas blocking the bile duct from the outside. By midweek, the decision had been made to surgically remove the tumour the following week.

Before this however, an MRI scan was to be carried out to give an even better picture of the tumour - in fact this never materialised due to the scanner being fully booked. Also, my bilirubin level had risen to 429, and despite the insertion of the stent, the assumption was that the stent had itself become blocked. An emergency procedure to control the bilirubin had to be performed and this was via the insertion of a line directly into my gallbladder to drain the bile into an external bag. I was now ready for surgery the following week.

On Tuesday November 25 2003 at 8am, I was wheeled into the operating theatre at Hammersmith Hospital to undergo a PPPPD (Pylorus Preserving Proximal Pancreaticduodectomy) - removal of the head of the pancreas (the part containing the tumour), together with the duodenum and gall bladder, and reposition the bile duct and the pancreatic duct into the newly constructed intestine. 10 hours later, I was wheeled out, the surgery having been deemed successful. I spent 1 night in intensive care, and the next morning was transferred back onto the ward.

Throughout the following week, I had some 'interesting' morphine induced trips, re-learnt to walk - forced out of bed after 2 days by the physio, re-learnt to eat - I did not eat anything solid for 9 days, re-learnt to go to the toilet - after such a major operation discovering that your new internal plumbing is working correctly is quite significant, and gradually had all of the pipes and drips (which seemed to be coming out of every orifice) removed. 3 external drain pipes were to remain in until my final discharge from hospital.

13 days after the operation, the histology reports on the removed tissue confirmed that the removed tumour had indeed been malignant (cancerous). The surgeon also confirmed that although in his opinion the operation had been a success, because of the tumour's position to an artery, it had not been possible to remove it all. He had in fact extended the operation by 2 hrs as he tried to remove as much as possible. The positive news was that the cancer had not spread outside of the head of the pancreas (despite being active in his opinion for around 1 year), and he recommended that the Cancer Team at the hospital would recommend a course of chemotherapy.

Just before my discharge, there was still some concern that my repositioned bile duct was blocked as my bilirubin level was still quite high (although lowering gradually). A dye test confirmed that all was ok, however, a decision was made to insert a permanent stent into the bile duct. The day after, all the remaining drains were removed, and so 16 days after my operation, 26 days after entering Hammersmith Hospital, and 2 months after the original symptoms I finally went home on December 11 2003.

Needless to say, Christmas 2003 was quiet with the time spent recovering, sleeping and trying to get fit and put on weight. In total since the initial symptoms started in October I had lost ~25lbs (10kgs). The only drug that I was taking was CREON, a pancreatic enzyme that topped up a lack of naturally produced enzyme. My staples, 39 of them holding my scar together were removed by the GP surgery nurse on 23^rd December 2003, and as a family, we celebrated my 44^th birthday on Christmas Eve with a 3 mile walk and lunch in the countryside.

A consultation with the Hammersmith Hospital Cancer Team had been set for January 5 2004.

Chemotherapy

The meeting with the Cancer Team was an interesting one. They gave me the results of a CT scan and blood test that had been done 1 week after my discharge from the surgical ward. The scan showed no evidence of tumour (although tumours < 1cm in diameter are very difficult to spot), and the cancer marker that was being used (CA 19-9) showed a normal reading. (CA 19-9 cancer marker has a normal range of 0 - 33. Prior to my surgery my reading was 135). In effect, the Cancer Team saw no evidence of cancer in my body, and I felt that I was given a choice as to whether or not I should undergo the treatment. For me this was not a choice as I wanted to ensure that I gave myself the best opportunity for success by using the chemotherapy to 'blast away' all remaining traces, particularly in the light of the surgeon's comments about the operation. Because of my general fitness, the Cancer Team felt I was fit enough to start treatment the following week.

Regarding work, I had provisionally intended to start back on January 13 2004, the day after my first chemo treatment. The doctors in the Cancer Team advised that I reconsider until after the 1^st treatment cycle (3 weeks) in order to assess how I reacted. With hindsight, in January I was still quite weak from the effects of the surgery and needed a lot of rest and sleep throughout the day, and was not in a position to start work, irrespective of the chemo.

The next 6 months were to be dictated by my treatment days and cycles with 'normal activities' fitted in around good weeks and bad weeks. I was scheduled to have 8 cycles of 21 days. 2 drugs were to be used:

• Gemcitabine - a new generation drug which is used for the treatment of pancreatic cancer (and bladder and non small cell lung cancers) and
• Cisplatin - an 'old generation' drug which was to be used as a 'booster' for the Gemcitabine.

Provided my blood levels were ok, then 8 cycles would continue back to back. Blood levels to be monitored were:

• Haemoglobin - oxygen carrying capability of the blood
• White Cells - infection fighters
• Neutrophils - infection fighters
• Platelets - assists with clotting and healing

In general all 8 of my cycles took the same pattern:

• Day 1 - 7: feeling of nausea (but never sick - assisted by anti-sickness pills), difficulty eating because of abdominal discomfort and temporary loss of taste sensation (metallic taste in the mouth due to the cisplatin), gradually becoming very tired a listless by day 5, 6 & 7. During these days I was unable to do anything due to a complete lack of energy and inability to concentrate.
• Day 8 à Gradually starting to feel better and generally by day 10, I was able to do most things again.

Some milestones throughout the cycles (mostly days 10 - 21) were:

• Cycle 1: spent some days at work, and re-started training my daughter's football team, 1^st night out with Sue since October.
• Cycle 2: re-start work (my employer was very understanding and supportive throughout the whole of my treatment, and allowed me to work as much as my body was able, which some days meant leaving after 2hrs work), walking break in Yorkshire (5.5 & 7.5 mile walks up 2 of the 3 peaks).
• Cycle 3: re-start squash - March 13 2004, 1^st game of squash since October
• Cycle 5: re-start 6-a-side football
• Cycle 7: family holiday in Corfu

All of my cycles followed consecutively as my blood had recovered to 'acceptable' levels after each treatment, however, at the end of 8 cycles my blood counts were at or below the normal level range. I did not have to have any blood transfusions.

Regarding side effects, apart from those listed above, I did not suffer any other major effects. I lost some body hair (I am bald anyway so it was not really noticeable), and lost my libido. Throughout the course of the treatment I gradually put back on most of the weight I had lost. The only drug which I need to take is CREON with every meal.

My last chemo treatment was on June 12 2004, and following this it took ~4 weeks for the drugs to work their way out of my system, and start to feel 'normal' again. (With hindsight, although during days 10 - 21 of each cycle I said I felt 'normal', the effects of the drugs in my bloodstream and the lowering of my blood levels meant that I was always far from feeling 100% normal).

Follow up

Initially, I am on a 3 month follow up regime. This consists of a CT scan and cancer marker tests. Below you will find the results and other significant events since the end of my treatment.

August 2004: the scan showed that there was 'no evidence of residual or re-occurrence of cancer'. My CA 19-9 reading was 4.

October 2004: 'normal scan' result, and CA 19-9 reading of 3.

November 2004: I, together with 9 friends, completed a 240 mile bike ride from Bolton to Hammersmith in 3 days. In addition to raising awareness of pancreatic cancer and raising some sponsorship money, it marked the 1 year anniversary of my surgery and therefore was a very cathartic experience, and was for me something which drew a line under the previous year.

January 2005: 'normal scan' result and CA 19-9 reading of 3. Follow up regime has been pushed out to every 4 months for the 2nd year post operation.

May / June 2005: scan and usual marker results were ok (CA19-9 of 13), however, there was a raised LDH marker reading of over 600, well over the normal range. All the markers were redone 3 weeks later, and the LDH marker had reduced to 315, well within normal range (it appears that this is a very sensitive test and prone to error), with a CA19-9 of 12.

September 2005: Completed my 2nd long distance bike ride - this time purely for pleasure. Together with 11 friends, I completed the Coast to Coast (C2C) - Whitehaven to Tynemouth. 231 km (143 miles) in 2.5 days. Significantly tougher than the 240 miles along the flat last November, but again a great sense of satisfaction.

September 2005: no scan carried out, the oncologists felt that every 4 months is overkill, so just the marker results, which were ok (CA19-9 of 9).

September 2005: Presented my 'patient experience' (basically a presentation version of this case study) to the participants of the 3rd National Pancreatic Cancer Nurses meeting in Birmingham.

January 2006: Scan and blood results ok today - much relief and a glass of champagne to celebrate.

April 2006: Ran the Reading Half Marathon as part of a 36 strong Pancreatic Cancer UK team in a time of 1 hr 59 min 16 secs. Wife Sue also ran finishing in a time of 1 hr 51 mins 46 sec, and my daughters Rosa and Immi competed in the 4 km Green Park Challenge race (16:57 and 18:31 respectively)

May 2006: 4 month check-up. No scan carried out, marker results were ok (CA19-9 of 8). It is ironic that in the week I have had my latest positive results, I have also been affected most badly by a virus which has completely knocked me out (reminds me of my old chemo days). When asked by my oncologist whether I was having any problems, I did mention to him that I seemed to pick up every single virus around and react to them very badly, to which he replied "oh, what a surprise!"

May - September 2006: Throughout this period, I appeared to pick up many viruses which resulted in many 'hot flushes'. The most serious of these was where I had some 'violent' teeth chattering just after arriving for work one day, and resulted in being off work for 7 days, whilst being treated with antibiotics. Throughout this period, I felt very tired and lousy.

September 2006: 4 monthly check up - CT Scan and Blood markers. Blood marker results within normal limits (CA19-9 of 13), but initial scan report indicated possible inflammation of bile duct. Combining this with the tired and lousy feelings, the initial thoughts were that this could be due to an infection of the stent that had been inserted following my Whipples, and that the viruses, hot flushes and teeth chattering (rigor) was a symptom of this. Further investigations of the scan pictures (as opposed to the report), showed no evidence of infection, and I have been asked to keep a record of when I get 'hot flush' viruses over the coming months.

September 2006: Restarted my 11-a-side football career by joining a Veterans football team. In addition, completed my 3rd long distance bike ride (again purely for pleasure). Eight of us cycled from Chepstow to Cardiff (via Breacon), a total distance of 120 miles in 2 days, and passing through the Breacon Beacon hills - tough, but a great deal of satisfaction.

February 2007: Started a course of radiotherapy with capecitabine.

June 2007: recovering from radiotherapy and back to work.

July 2008: arranged "Bike to the Future 2008" from Hammersmith to Krakow, Poland and himself cycled from Hanover to Krakow

Lesson Learnt

Find out as much information as possible. Sue in particular scoured the internet for many sources of information (we had no links to Pancreatic Cancer UK at that time). This enabled us to ask the right questions to our GP and all of the hospital doctors and surgeons we encountered.

Do not be afraid to challenge any of the doctors / surgeons. Our challenging made things move substantially quicker than if things had been left to their usual timings.

Ensure you are aware of the drugs that are being administered - on a number of occasions, I had to stop someone administering a drug that I had already received.

During chemotherapy, make the best of the good days to get fit and healthy and back to doing 'normal' things.

Set targets for improvement - both mental and physical. Getting back to work, getting back on the squash court and the completion of the Bike to the Future bike ride were very important targets for me, and working up towards them, as well as their final achievement became very significant factors in my recovery.

Sue and I made a decision right from the beginning that no matter what the news, we would be open and honest with all family and friends. It helped us, and it helped them to talk and avoid awkward situations.

And finally...

Since October 2003 I have learnt a lot through an unplanned experience. The above case study is specific to me. I have met many people who have reacted very differently to the same treatment I had, and in general, I would say that my reaction (and this case study) is in many ways untypical.

However, the reason for writing this is that if any of my experience helps anyone going through any stage of pancreatic cancer treatment, then I feel it has been worth the effort.

More on my experiences with pancreatic cancer can be found on a separate page.