Rare forms of pancreatic cancer
Caroline | Mark | Louise | Paul
In August 2008 I turned yellow. That was the first sign that something was wrong. Up to that point I had been a very healthy, non smoking, rarely drinking 36 year old. With hindsight, looking back to the run up to that day, I had been feeling tired and had noticed that my stools had turned extremely pale.
I had also started to itch, incredibly uncomfortable itching, especially on the palms of my hands and soles of my feet. However until that Sunday morning when I looked into the mirror and noticed the corners of my eyes had turned yellow, I hadn’t taken much notice of these symptoms. I knew what the yellow eyes meant: Jaundice.
had been told around the age of 12 that my kidneys were joined together on one side of my body and, although this had never caused me any problems and I had never received any treatment for this, the Jaundice worried me that there was maybe something wrong with my kidneys and they could be failing. Therefore off to A&E I went.
At first, the thought was that I probably had Gallstones and that one had got stuck in my bile duct and therefore the bile had backed up into my bloodstream and caused the Jaundice. However, my lack of pain was a worry as jaundice without pain is usually something to worry about. After running some blood tests I was admitted as my Liver Function Tests were abnormal, especially my Alkaline Phosphatase and Bilirubin levels. A couple of days later I was sent for an MRCP scan (similar to an MRI but which shows detail of the liver and bile ducts) and this indicated a blockage to my bile ducts, very probably a Gallstone. The relief was immense as I had already started to think cancer, either of my bile duct or pancreas. My family all thought this was more than a little far fetched but I just had a feeling.
The next day I was sent for an ERCP, not the most pleasant of experiences but one I was to have on many more occasions. The doctor indeed found a gallstone, disposed of this and the next day I was sent on my way with an appointment to see the Consultant in a couple of weeks. However, over the next couple of days it became apparent that although my stools had turned to normal, my jaundice seemed to be getting worse. On top of this I had started to get pain. This pain seemed to be very likely gallstone attacks and consisted of debilitating contraction like pains in my chest, nausea and vomiting. At my outpatient appointment the Consultant suggested that I see the Consultant Endoscopist again as I very probably had another gallstone stuck in my bile duct. I luckily got to see the Consultant the next day and was in having another ERCP a couple of days later. This time the doctor removed debris and informed me that I needed to have my Gallbladder removed very quickly as this was very likely to keep happening.
As I was waiting for my next outpatient appointment, I seemed to be getting worse and, on a whim, visited my GP. By this time I was quite distraught. I felt extremely ill, was having the gallstone attacks virtually daily and the jaundice seemed to be getting worse. I told the GP of my concerns that it was something a little more serious and received a laugh in response. However the GP did send me for a blood test. A couple of days later he rang me and asked how I felt. He then informed me that my Alkaline Phosphatase level was now off the scale, this is the Liver Function test which indicates a blockage in the bile ducts. Taking the information in, I decided to take the matter into my own hands and ring the consultant at the hospital directly to inform him of this. Unfortunately he was on holiday at the time but I spoke to his secretary who informed me that she would tell him this information when he got back.
After an excruciating wait and more than a few phone calls I received a letter from said consultant telling me that he was referring me the liver specialist as he was very unhappy with my blood test results and he wanted to me to be checked for an underlying liver problem. I had to go for further blood tests to see if I had an Autoimmune Liver Disease and waited another few weeks for the results. On seeing the liver specialist I was told that as all these tests had come back as negative, it had to be Gallstones. However, at the meeting I started to feel the now very familiar signs of a gallstone attack coming on. The consultant told me that I would need another ERCP to clear my bile ducts before my gallbladder could be removed. I was sent for an ultrasound the next day which again showed a blockage in my bile ducts.
Later that day I was rung by a doctor from University College Hospital in London (UCLH) who informed me that I had been referred to them for my third ERCP. Although this was extremely scary at the time and my mind run amok as to what they suspected was wrong with me, it turned out to be my saving grace as I met the wonderful Dr Webster. After my third ERCP in which he also inserted a stent to help clear my jaundice, he informed me that he had found a blockage which he thought was a gallstone, however despite numerous attempts he was unable to remove this or take any debris from it. So here started my many appointments, procedures and consultations at UCH over the next few months. During this time it was dropped into conversation that we could be looking at something a lot more serious than gallstones, however it was proving very difficult indeed to diagnose and the clinical opinion was mixed.
My biopsies were inclusive and internal scans and CT scans showed a blockage but it wasn’t clearly a tumour. Then the day came when at an appointment with Dr Webster he kindly told me that although they were unable to definitely diagnose me, the clinical suspicion was that I had pancreatic cancer in the head of my pancreas. The good news, if there could be any, was that it was no more than 2 cm and was operable. I was given the option of surgery, a Whipples resection or another round of tests to try and diagnose it properly.
After many months of worry and uncertainty I opted for the surgery. In April 2009 I attended UCH for my 8 hour operation. I came around in Intensive Care to be told that it was in their opinion cancer, however, they felt they had managed to remove all of this and had taken away 31 Lymph nodes to test for spread.
The next few days went by in a blur. The pain when they took me off the morphine drip was horrendous but after a couple of days, I was coping better. I was determined to get better quickly and in return was allowed home very early after 9 days. I did have to attend the hospital again the next day when my scar started leaking fluid but was allowed home again when the doctors were satisfied this was nothing to worry about. My recovery at home was trouble free and after a few weeks I was feeling much better.
At an outpatients appointment a couple of weeks after my discharge I was told the news that my tumour had been a neuroendocrine tumour, 2 cm and completely resected. Even better my lymph nodes were completely free of cancer. After a consultation with the Neuroendocrine Cancer Unit at the Royal Free Hospital, it was decided that I did not need any chemotherapy. However, I did need to undergo genetic testing to rule out MEN 1 syndrome which is a hereditary gene mutation which pre disposes you to neuroendocrine tumours in your pancreas, para thyroid and pituitary glands. As a mother of two this was extremely worrying but thankfully this was negative.
I am now nearly two years on since surgery. It sometimes feels like a lifetime ago. I can’t quite believe that it all happened to me. The worry of not knowing was the worst. Funnily enough, once I knew I was facing cancer, it was easier to cope with. My diagnosis of a neuroendocrine tumour is extremely rare especially at the age of 36, but as it is a slower growing and less aggressive cancer than the more common pancreatic ductal adenocarcinoma, I have a much better chance of survival and non recurrence.
I can’t say I have ever learnt to accept it, I don’t know why it happened to me and never will. However without the wonderful care and expertise of the the medical staff at UCH I would have been in a much worse position today. Dr Webster never gave up on me and Professor Malago my surgeon was outstanding. I am one of the very few, very lucky ones, I survived and I plan on that continuing. The after affects of surgery have been few. I do not need to take any medication and eating is relatively trouble free. I have lost weight and cannot eat as much as I used to, get fuller quicker and sometimes feel a little nauseous after eating but this can be few and far between.
My last CT scan and blood tests showed no evidence of disease and I am due my next CT scan in 8 months time. My life, however has changed considerably. My husband and I have separated. Although a very kind and wonderful man, my illness highlighted problems within our marriage and we split 7 months ago. However, my illness had a completely wonderful and surprising affect on my life also. Determined to be happy and live life to the full, I am now in a relationship with the love of my life, an old boyfriend that I hadn’t forgotten for the last 18 years. We plan in spending the rest of our long and very happy lives making up for lost time.
Caroline, February 2011
My name is Mark Nye. I am a 54-year-old male from Perth Western Australia. Below is the short story of my 7 ½ year battle with an Advanced Pancreatic Neuroendocrine Tumor.
I am a FIFO worker who has worked in the construction industry for many years. I was in between contracts back in March 2010 when I woke one morning rubbing my stomach feeling a lump just below my right ribs. I booked to see my GP who sent me for an ultra sound. It was confirmed that there was something there but further diagnosis was required. I was referred for a biopsy. A couple of days after I received a call from the Oncologist informing me I had a Neuroendocrine Pancreatic Cancer. As I was a country patient he gave me a contact to call who he explained would take control and organize all required appointments.
The only two words I remembered from that phone conversation was Pancreatic Cancer. I returned home immediately and logged in to Google. Worst thing I could have ever done. I gave myself 3 to 6 months to live. I was devastated. My world had been turned upside down. I waited for my wife and daughter to return home and informed them of the devastating news.
There were a few very emotional days that followed. Numerous phone calls were made informing family and friends of our challenges ahead. I say our challenges because we had to attack this problem as a team and as a family. Without the support of my family I am sure I would have crumbled. We had to stay positive.
We met with doctors over time to discuss our options but it appeared that there weren’t too many due to the physical size of the tumor and its location. It was inoperable.
We were offered the Clements 2 Trial Treatment with Professor Harvey Turner and Dr Claringbold at Fremantle Hospital Nuclear Medicine Department. I was given 4 treatments 8 weeks apart. I considered myself extremely lucky as the treatments only required an injection with some minimal Chemo tablets as back up. This meant I could continue my FIFO employment. Side effects were minimal with some nausea and skin rashes. We continued to remain positive.
After viewing the previous scan, and discussing the results from the first injection there was some celebration in the room as my tumour had reduced significantly in size. This continued to occur after each treatment. The tumour appeared to continue to reduce in size even 6 months after the final treatment. I continued to have 6 monthly scans to monitor the tumour size as it appeared to have stabilised and was not doing anything.
There was some discussion with Dr Claringbold regarding the possibility of a Whipples Procedure to resect the tumor but it was agreed that while the tumor appeared dormant we should continue to monitor its progress and when it does start to grow then we will review and discuss any further actions.
I continued with my 6 monthly scans as required as required over the years and then in June 2017 it was discovered that the tumor had started to grow. My wife and I always knew that eventually this would be the case but after such a long period of time it was a bitter pill to swallow. Almost to be compared with the first time I was diagnosed. I felt that our luck may be coming to an end.
My case was presented to a panel of experts and from that it was decided that it was time to perform a Whipples Procedure. I had a limited knowledge of this procedure from the discussions with Dr Claringbold some years before. My wife and I met with Professor Ballahl who was the Surgeon to perform the surgery. After spending over an hour with the Professor we both felt extremely comfortable with how he spent the time to thoroughly explain the procedure and were more than willing to go ahead with what was required. We were booked in for surgery 8th August 2017 at Fiona Stanley Hospital Perth. My wife drove me to the hospital on the morning of the surgery. Not a lot was said as we were both aware of the complexities of the surgery and the risks involved. In saying that, we went in with a good strong and positive attitude. We said our goodbyes and off I went.
The morning after theoperation
It was an extremely long and trying day for my wife. The surgery took over 12 hours to complete due to some unknown damage to my internal organs caused from the prior treatment. My wife was notified around 9:00 pm that night to let her know the operation was complete.
I woke in the following morning in ICU not really knowing much about anything until the lovely Physio ladies came to get me out of bed. I was successfully stood up before returning to bed. I was moved from ICU the following day to the ward where my recovery rapidly advanced. I was up walking around the ward and taking myself to the toilet within a couple of days much to the surprise of a few people. I had some pain but nothing the pain management team didn’t have under control. They gradually removed all drips, feed lines, drains ETC and by day 6 I was dressed and ready to go home.
Upon my return home on day 6, I struggled with weight loss and without the constant loving care from my wife my recovery would not have been as advanced. I could only eat very little but my wife continued to feed me every 2 hours to ensure I was receiving the nutrients I required to gain my strength. After being home for about a week I managed to stabilize my weight which was great news as I was losing 1 kg every 2 days. I gradually grew stronger every day. This helped me mentally as well as I knew I had to keep a strong mind.
We had discussions with a Nutritionist to confirm we were on the wright track and all appeared to be going well. We met with the surgeon 24 days after the surgery. He was extremely happy with my recovery and I had him sign a clearance for me to return to work. I returned to work 30 days after my surgery.
It is now 4 months after surgery and I am feeling great. I am comfortable to have to take Creon medication with my meals and considering what they put my body through I could not be happier. I met with my Oncologist 2 weeks ago and he has said that I am now cancer free. What a great Christmas Present. What a journey.
I know there is a lot of people out there who have ongoing battles with cancer as I did. I believe that I was one of the lucky ones as my treatment to defeat that horrible beast was only minor compared to what others go through. I have seen many people during the course of my 7 ½ year battle be diagnosed and pass. Once again, I consider myself the lucky one.
I also believe that you must remain strong in mind with positive thoughts as you work through your illness. You need the support of family and friends to help you through your journey. At times, you battle with the voices in your head and this is when must dig deep to push them aside and move on with life.
I thank my family and friends for their support and of course I say a huge thankyou to the medical team that made my journey a success.
I am extremely lucky to have the extraordinary support of my beautiful wife of 26 years and my 25-year-old daughter. Without them I would have struggled to win the battle. It is easier to win a battle as a team than to try and take on the beast by yourself
Life is short. Be strong and believe in the people around you. You can win.
Back to top
Louise, age 43: Pancreatic Neuroendocrine Tumour, diagnosed September 2015
I had tummy trouble during my teenage years and was given numerous different pills and mixtures from my GP, but these only seemed to work for a short time and I would have to go back to the GP for something else. I was a smoker, so as you can imagine, I got told off and this was always blamed for my troubles. I stopped smoking nearly 5 years ago.
During my late thirties I began to have pains in the front and middle of my chest that radiated through to my back and on bad days it would radiate all round my body and I would be on the floor in agony, only gaining real comfort on all fours or resting with my elbows on my knees, bent over in a chair.
As these pains became more frequent, three to four times per week, my GP sent me for an ultrasound scan of my gall bladder.
Upon completion of the scan the sonographer advised me to return to my GP next day as the scan had revealed a mass on my pancreas and hot spots in my liver. I was absolutely devastated as I knew that “mass” is cancer and I felt sick as I walked out of the Hospital.
The following morning my GP confirmed my fears by informing me that he thought that I may have Pancreatic Cancer. This came as a terrible shock to me, my family and friends. I asked why he suspected this because other than the pain in my stomach and back, I had no other symptoms, I was not jaundiced, I had not lost lots of weight and my stools were completely normal.
I was then referred me to a General Surgeon who sent me for a CT scan which confirmed the mass in my pancreas and liver hot spots. The surgeon thought that I looked to well to have full blown pancreatic cancer so he sent me for an Octreotide scan to get more detail information on the mass and hot spots. This involved 2 days of scans with a specialist isotope injected into my bloodstream, when I received the results of the scan from my oncologist she informed me that they suspected I had a neuroendocrine tumour on my pancreas. My life changed that day, my world came crashing down, I thought “that’s it, I am going to die!” they also suspected I had this for 3–5 years before it was diagnosed.
My oncologist then referred me for an endoscopy and simultaneous biopsy, the result of which confirmed a neuroendocrine tumour on my pancreas.
My oncologist prescribed Afinitor, which is a biological chemotherapy drug that I take daily, alternating 5mg and 10mg each day, so far I have had very little side effects. I also take regular Morphine and am also prescribed Orimorphe for breakthrough pain, I am also on anti-sickness and various other tablets.
I was in and out of hospital for 8 months after my diagnosis as I kept getting high temperatures and was also violently sick, they kept me in each time for a few days to check for infections, but, I am happy to say I have stabilised now.
I was also introduced to Karen, whom is my Specialist Nurse and I can call on her for anything I need or if anything is bothering me, I have also recently been introduced to my Macmillan Nurse called Donna.
Three months after I began the Afinitor treatment a had a scan which showed a 20% regression of the tumour, however the next scan 6 months later showed that the disease has progressed slightly. My Oncologist is writing to the Liverpool Hospital to see if I can qualify for a radiolabelling treatment called PRRP, this involves being given a fusion of Lutetium Dotatate which is given intravenously over a half hour period, you are also given a protein infusion for 4 hours at at the same time to protect your kidneys.
I am looking to the future and hoping I can get the treatment in Liverpool, as in most cases it is successful and I feel it would help my quality of life, as right now, because of all the medication I take, I can sometimes feel lethargic and have trouble getting out of bed.
I hope this helps people to understand more about Neuroendocrine Pancreatic Cancer and how difficult it can be to diagnose, stabilise and treat.
Back to top
Hi. I’m Paul, aged 57. I’m married with two daughters (19 & 17) and two stepsons (22 and 26). I live near Newark in Nottinghamshire and for 31 years worked for a multinational computer manufacturer. I have generally been fit and healthy, not smoked and drink socially. I did have a spell on the Atkins diet which I found good and lost some weight I wanted to lose to a respectable 12st or so!
Life was good but extremely stressful at work. I was a Business Operations Manager responsible for the sales, revenue and profit achievement of my division. Long hours, constant pressure and stress. Generally I was coping well I thought.
Anyway, around February 2006 I started to feel like I had indigestion or mild heartburn. I let it ride for a week or two then spoke to a pharmacist at Boots and got some Gaviscon and Zantac. Took these for a few days but they didn’t make a difference. In hindsight the feeling (an annoyance not pain as such) was as if I had accidentally swallowed a whole boiled sweet and it was stuck just underneath where my ribs start to separate at the bottom. I had also lost about 8lb and noticed my appetite was slightly ‘off’.
Thursday 30th March 2006 I noticed blood while wiping after going to the toilet. Dark coloured not bright so I knew it was coming from somewhere inside. I was concerned but thought I would see what happened over the next 24hrs. The next time I went to the toilet on the Friday was the same – more blood. OK, mild concern rising!
On the Saturday 1st April (some Fools’ Day!!) I called NHS Direct. They went through their questions and once I mentioned blood their scoring increased and they said I should go to A&E. Well, most of us know the queue lengths so I decided to call the out of hours GP service. They went through a similar set of questions and again at the mention of blood decided that I should see the duty GP at the Hospital. Two out of two sealed it!
At the Hospital the GP took my history and performed a rectal examination. She told me that I was to be admitted straight away to (I had a choice of two) Nottingham City Hospital with suspected stomach ulcer which could be about to perforate. OK, tricky but not serious!! So, back home briefly to pack a bag and have my wife drive me the 25 miles there.
I was admitted onto the EAU (Emergency Admissions Unit) where they took a full history, bloods, urine, another rectal exam and chest/abdomen X-rays. They said I would also need a gastroscopy but this may not be scheduled until the Monday depending on availability of a specialist to carry it out. A while later a registrar came to me and explained that my bloods were ‘off’. Severely ‘off’, particularly my Liver Function Tests (LFTs). He asked some supplementary questions about foreign travel etc. which didn’t help him. An hour later a team arrived – Consultant and three doctors including the Registrar. Serious faces and very direct questions. They said my LFTs were seriously ‘off’ and something must be causing this. They said they were treating this as something separate from the suspected ulcer. So, they were thinking perhaps some kind of hepatitis – had I been with prostitutes, had gay sex, was I on drugs, was I really sure I wasn’t on drugs, taken an overdose of anything…..all of which I answered no, no, NO! I knew they didn’t believe me as it all didn’t add up. Well, off they all went to do more tests……
Sunday 2nd April I was transferred to a medical ward under Consultant Dr Keogh. I had more X-rays then had an Ultrasound. On Tuesday the doctor picked up what she thought was a thickening of the bowel so had her consultant review the pictures. He agreed. Now they decided that maybe it wasn’t a stomach ulcer but a bowel issue so ordered me to have a colonoscopy (tube/camera inserted rectally). This was scheduled for the Wednesday. Daily blood tests but interestingly no more discussions about hepatitis; seemed they now were looking for a single cause.
On the Wednesday I went early for the colonoscopy. I was given a light sedative and although awake for the procedure (so they can sense reactions/discomfort etc.) and could see the TV monitor I only vaguely remember the procedure. At the end of their examination the operator called my consultant to say that my bowel was clear. She then asked them to immediately perform the original gastroscopy. I had heard that it can be uncomfortable ‘swallowing’ the tube but as I was reasonably sedated I don’t remember this being a problem. Afterwards I asked if he had found my ulcer – yes, he had found some ulceration. Mmmm. Great I thought – nothing more serious! Must tell family and friends the good news!
Back to the ward to rest and sleep the procedure off. I sent a few text messages from my (hidden!) mobile phone that it looked like an ulcer.
Well, the team arrived at my bed and pulled the curtains. Concern rising…Yes, they had found something which they had taken a biopsy of. They couldn’t say what it was until they had it examined but there was some kind of lump in my duodenum. Anyway, try not to worry and they had now scheduled a CT scan for later that day.
Oh dear. Replace the good news messages with messages of slight concern.
Was this really happening to me? Was each day with its attendant tests leading me down a path I didn’t want to be on? I tried to be positive. Believe that all would come right in the end. They would find an innocent explanation and fix it. I would be back home in a day or so with life back on track.
The CT scan was straightforward – I had had one some years ago after a back injury. This time I became very nauseous when they injected the die into my veins but managed (just) to keep still and not vomit.
Time came and went. Visitors came and went. I was not bed bound so freely wandered about the ward and indeed the immediate hospital area. My family visited in various combinations of children with my wife. Di. She is an intensive care and cardiac specialist nurse at another hospital so of course knew more than most – including of course me. She was bright and controlled and supportive but under the covers was more concerned than I was.
Thursday 6th April was a long, long day. I almost felt a fraud taking up bed space. I was sure there were more deserving cases. The discomfort in my chest had eased somewhat. Surely that was a good sign? After lunch I was in the day room. Through the glass doors I could see my consultant and a nurse coming down the corridor and into the room. They sat either side of me. Oh God what is it? She was sorry she said. The CT scan confirmed I had a tumour on my pancreas. It was large. The biopsy confirmed it was malignant – Cancer. She was not a cancer specialist so I would be referred on. She could not say that this would not severely impact my life for the next 6-12 months. She could not say that it would not shorten my life. I could go home and they would ring me on the Friday after they had reviewed my case and available options.
The first weekend was a complete and utter nightmare. We had to tell the children but how? Di and I agreed we would wait until I knew the exact treatment plan so we could tell them of the problem but also explain the treatment I would get to fix this! I went from despair to hope in regular hourly cycles. My mind was numb and exploding at the same time. Di was being so strong for us both.
Friday late afternoon Dr Keogh called to say the MDT (Multi-Disciplinary Team) had met at Queens Hospital Nottingham (Sister site to City Hospital). Their conclusion was that the tumour was inoperable and that I had an appointment with Oncologist Dr Bessell at The Park Hospital Nottingham to plan Chemotherapy. I asked why they could not operate but she said she wasn’t there but that the tumour was too large and too complicated – I should ask more of Dr Bessell.
OK, so I knew the treatment plan, or at least the starter. Lots of questions which right now were all unanswered. The biggest being why not operate? I knew that would be the best chance to try to effect a cure but it seemed it was not for me…..
I went on the internet to try to find some answers. Oh boy, not the best idea. I found an excellent site – Cancerbackup, now part of Macmillan – which was to become a saviour in many respects and as it happened was the site/group used by my hospitals to give information and support. Another site was I think American but typified so many out there. Full of stark statistics and depressing (could I get any lower?) outlooks and mortality rates! I knew that my cancer was difficult and had a poor prognosis. That was enough. I decided then and there NOT to surf random sites. That I was my own statistic, NOT an amalgam of others. I had to fight this and become positive somehow. I did not want to die. I did not want to leave my wife and children. I had the first of a constantly recurring scene: The deathbed scene with Di and the children surrounding my bed as I faded away. No. Not yet, please. So much to do, so much to live for.
Telling the children was so hard. We sat them down together and explained I had a tumour but that I would start chemo and get better. One asked if I would really get better – yes of course! Another – would my hair fall out!
Then I took myself off to my study to reflect and to start to call my sisters, my niece, brother-in-law and very close friends. This was so hard but I wanted them to hear from me direct – not through intermediaries. In general, there was a desire to rush and see me. Understandable, especially from my sisters (one of which lives in Seattle, US). But this I didn’t want. I wanted their love and support but not an immediate family gathering. Also this would send the wrong signal to the children. So difficult.
The first time I looked in a mirror I cried. I looked at my abdomen and tried to picture the horrible, vile cancer lying beneath. Why were you there? Had I contributed? Had the stress of work and my foul, aggressive, bullying ex-director been responsible? Was it in any way hereditary (my father had died of cancer of the bowel when he was 58)? More unanswered questions that kept me in that circle of sadness and despair.
Tuesday 11th April 2006 Di and I met with Dr Bessell at The Park Hospital. This is a private hospital though Dr Bessell also works at the City Hospital where I was diagnosed. I had private cover through work hence the referral here. He explained the nature of the tumour, its relatively fast-growth nature which has positive benefits in terms of potential ability to respond to treatment. It was 7cm long located in the head of the pancreas and protruding into the duodenum. The bleeding I had experienced had most probably been caused by food nicking the tumour. If not then it could have gone undetected for significantly longer. The CT scan did not indicate that cancer had spread outside of this which was very good news. Most often, cancer of the pancreas is only identified when a secondary tumour elsewhere (like the liver) is detected. By then it is usually too late to attempt any form of cure.
I asked why surgery had been ruled out. He said it would be too dangerous and the tumour was too big but said it would be best to see Mr Beckingham who had been at the MDT and made the decision.
So, the plan was a number of 3-weekly cycles of chemotherapy. First week Gemcitabin and Cisplatin, following two weeks just Gemcitabin. We would start the coming Thursday. My hair would probably not fall out. Other side-effects would mainly depend on how I reacted. I went round to meet the nurses on the Clumber Unit (day chemotherapy unit) who were very friendly and understanding. They did their best to answer my questions and gave me some introductory booklets and leaflets to explain what would happen.
I left numb and with brain cells exploding with the new information. I was at a station, had bought a ticket and was waiting to board.
I arrived for my first session scared and very apprehensive about how I would feel afterwards. The process we followed was as follows:
- Get weighed
- have bloods taken – in particular to check for immune levels (too low and they would delay a chemo dose), HB Count (to see if I needed a blood transfusion)
- insert a canula for the chemotherapy
- wait for above results and for the chemo drugs to be made up. If a Cisplatin day then I would receive lots of saline and other chemicals to ensure that my kidneys were protected.
Cisplatin days had me there from 9-5. Other days I just had a half day visit. Generally I would be OK on the treatment day but would go downhill on days 2 and 3. No energy, tiredness, felt sick, no appetite. I had drugs to stop me being sick which worked very well. Drugs to help with diarrhoea, drugs to help with constipation. I bought gels to help with mouth ulcers. I used fragrance-free shower gels, kept out of any sun. Ate as much food as I could to counteract the weight-loss. Completely lost the taste for wine or beer (oh what a bad side-effect!!) or fancy food. It was as if I was pregnant in that I had obsessions with certain foods. If I wanted a sausage sandwich for breakfast then nothing else would do!!
I settled into the routine of weekly visits to my lovely nurses at The Park. We became friends, exchanged stories and experiences. Sometimes friends would drop by while I was there to help pass the time and give me support.
Every night before bed I had to take my temperature. If it read 38C or above then I was to wait 30 minutes and retest. If no better then I had to call the hospital and prepare to be admitted. The fear is always one of infection. With a low immune system there was a constant risk. Three times I had to go in. I developed jaundice and needed blood transfusions. We suspect the tumour was blocking the bile duct. After a week or so the symptoms eased.
I had 3 cycles of 3 weekly chemotherapy. I drove myself there each week though I could see my weight drop and I became tired and lacking energy. I noticed I walked about half speed compared to before. My bones showed through and I bought a waterproof bath cushion to ease the pressure when I took a well-deserved bath instead of a shower.
Dr Bessell then planned the next phase.
I went to City Hospital for the planning consultation. This involved a CT scan to determine if the chemo had had any effect but primarily to determine the angles of attack for the radiotherapy.
Good news, the tumour had shrunk from 7cm to 6cm. Small but in the right direction!!
I was to have 25 fractions of treatment (5 weeks Monday – Friday) with three angles of attack. Side effects were unpredictable but would certainly include chronic fatigue. Sickness or diarrhoea were further possibilities depending. Alongside this I was to have weekly chemotherapy with low-dose Gemcitabin.
So, the next phase. Daily drives to the City Hospital (45 minutes each way), a wait of up to 30 minutes (not bad) then 10 minutes of actual treatment. Plus of course a few hours once a week at The Park. It took its toll. I luckily had no sickness or specific bowel issues but the lethargy built up. I prided myself that I drove every day bar the last two when Di drove me. On two occasions the machine was broken so I had extra days added to complete the treatment. On the final Sunday Di was at work and my Mother-in-law was over. I was so, so tired and could hardly make the effort to move far. After dinner in the evening I just knew I was worse than ‘normal’. Mom was worried I could tell. I went to our bathroom and was sick. I tried to stay up but just wanted my bed. It was 8pm.
On the Monday I woke with severe abdominal cramps. I had has some the previous week but not as bad as now. Di drove me and after the radiotherapy I asked them to call Dr Bessell. He said it was a build up from all the treatment and got me some stronger painkillers. Tuesday was my final session. Card and chocolates for the kind and supportive staff, the long walk back to the car through green corridors. The journey lengthened by the slow pace of my gait. I felt so ill. I lasted until about 8pm again then went up to bed. My temperature was 39.5 and rising so one call and I was heading back to The Park. Severely dehydrated and with an infection. I spent 3 days there recovering hoping beyond hope that I would be OK by the Friday. We had decided to go as a family to our apartment in southern Spain. Di and the children so, so needed a break. I wanted a change of scenery but if necessary would stay behind. In the end Dr Bessell let me go but under strict conditions that I fly back if I started to feel ill again.
Luckily with every day I grew a little stronger. I kept out of direct sunlight, slept for a couple of hours most afternoons and would be in bed early but otherwise had a lovely relaxing time with my family.
After my return I was scheduled in for a CT scan to see what effect the treatment so far had had…..
I had the CT scan – not without some local difficulties with me reacting again to the dye injected in my bloodstream causing me to vomit as I was being scanned! A week later Di and I met with Dr Bessell to get the results. We were very apprehensive. He told us that not only had the tumour reacted positively to the Radiotherapy/chemotherapy but it had shrunk from the 6cm to 2cm!! This was more than anyone could have expected or hoped for. The success bordered on the miraculous. We were in a daze. Lots of questions but not necessarily asked. The sister and nurses hovered expectantly, smiles on their faces waiting to congratulate me with kisses and hugs. I was in a daze. The next step was to go back to the Surgeon to re-evaluate that option now that size was not the issue. I was to go back onto straight chemotherapy until we knew what the next step would be. I had just over 2 weeks until I could see Mr Beckingham. The second week I went for chemo I was turned down – my white blood cell count was too low. I was feeling low, had developed peripheral neuropathy in my fingers and more strongly in my toes and feet (this was a numbness and tingling sensation that never went away).
Di and I met with Mr Beckingham. Quite a change of mood from that last time we met! He was smiling and very welcoming. He had my scan films on the display unit and straight away said that we had achieved something he had not seen before. That with the tumour so much reduced he felt surgery was viable and indeed was my only chance of a cure. There was no evidence from what they could see of any spread outside of the pancreas. He was concerned about the viability of my pancreas as it had been severely affected by the radiotherapy. He suggested keeping our options open in terms of a Whipples procedure or a total pancreatectomy. For my part I said that if there was a choice between removing my pancreas and me being a diabetic for life or leaving some in and risking a relapse then I vote for life! I think he valued the frank discussion we had and my input.
So, the plan was a laparoscopy for him to check out as much as he could prior to the Op – this would be done in a fortnight or so. Then the major Op would take place at Queens Hospital Nottingham on 20th September, subject to an ICU bed being available.
We left him reeling with the promise of life yet fearful of the deliberate decision to elect for serious life-threatening surgery and the associated risks.
We had about 3 weeks to get through. Chemotherapy was stopped so that I could try and be as strong as I could be for the surgery. Hope abounded everywhere with friends, family and colleagues rooting for me. I was positive and hopeful yet so, so very scared. Any number of things could go wrong and I might not make it out of the operating theatre or the hospital. I had mentioned to my Reiki therapist that I kept having this image of my deathbed scene. She suggested I spin this around and deal with the issue by actively planning my funeral as a way of helping. And so it did. I planned the service, who was to be informed, who I wanted to speak and what music to play. I sorted out my finances and made a folder with all the information Di would need if the worst happened. The laparoscopy was performed and all was well. We were in the final few days. Time dragged yet at the same time flew by. How this happens I never know. Suddenly it was the night before surgery. I sat in my study and wrote a letter to each of my daughters – one they would only get to see if I died. I cried buckets as I said what I wanted to say to each of them. This was so hard and my lowest moment. I took Di through the folder and could hardly speak.
We woke early, I hugged and kissed the girls and we were at Queens admission ward by 7.30am. I was supposed to be first on the list but was told I would now be later – could be this afternoon! I really didn’t need this hanging around. It was hard enough to prepare mentally for this without uncertainty. As it happened I was called to get ready about 11am and went down to the Operating floor around 11.15. Saying goodbye to Di was tough and I was a bit of a mess as the nurse and I walked down.
I was looked after superbly by the OR staff and the anaesthetist. I had the various canulas inserted and then they fixed the epidural line in very carefully. Then after a word with Mr Beckingham it was off to sleep…
9 hours later I woke in ICU. The operation had lasted much longer than anticipated. My spleen’s blood supply came straight through my now useless pancreas so they had no choice but to remove it. In all then they removed my pancreas, duodenum, gall bladder and spleen. My pancreas was indeed useless, quite shrivelled by all accounts. It was sent off to the lab for analysis of it and the tumour. Surrounding organs looked fine. Subsequent analysis showed that the tumour was quite dead and indeed no live cancer cells were detected anywhere else. What a result!!!!
So, one night in ICU, 2 nights in HDU and then onto the ward. I had a naso-gastric tube into my stomach, a catheter for my urine, I/V blood pressure line, a sliding scale insulin line and a drain from my wound area. Over the coming days as I grew stronger they were removed in turn, all event-free. My biggest issue in days 4-7 or so was pain management. Despite a dedicated pain control team I was in agony, worse at night. A common problem is referred pain just below the shoulder blades. Understatement. It was agony. Nights calling for more painkillers, on-call doctors having to come and see what they could do.
Patients came and went but in the last 4 days or so there were four of use that passed the days together. Comparing notes and experiences as only fellow Cancer Club members know how. The last hurdle to overcome was making the first bowel movement! Given the food was not the most appealing and appetite naturally rubbing shoulders with negligible it was a tall order. However, enemas have their way!
Then home. That fantastic day when Di came to collect me and I walked carefully back across the threshold.
Slow is the word for this section. Very slow. Slower than the slowest you can imagine. Anyone reading this about to have similar surgery please expect to take anywhere from 12-24 months to approach true normality. The problem is one of expectations. I sort of assumed that because the staples were out, the wound was healing well, I was eating then I MUST be getting stronger and should thus feel much better than I was. Wrong. I felt exhausted. Had no energy. Had no enthusiasm to do anything. Didn’t want to walk. Didn’t want to go for a drive out. I stopped trying to see improvements day by day and instead looked for subtle changes week by week. That worked better. Gradually things improved. My weight started to plateau and begin to rise.
A big problem was depression. Some of it I’m sure caused by blood sugar issues as I grappled with the diabetic control. But I think it dawned on me that I nearly died. Yes, still could do but without the surgery it was a certainty. No question. Only when. Everyone else knew this but as I had lived from day to day I had not focused on this outcome – just making the best of the moment, getting behind the treatment. This all hit me like running into a brick wall. So, I thought about it all and cried. For what I might have lost. My devoted and supported wife. My beautiful children who had been there for me whenever I needed them.
It was a tough time with bouts of insomnia. But time heals and gradually I came to terms with it all and as I grew stronger my perspectives changed.
I think I will wrap this up here. I retired early from work in April 2008. I have had some issues to deal with like a very rare allergy to insulin but that is unique to me and not anything anyone else will experience. I am getting used to being a diabetic and the control that is required.
Its funny, I consider that I have Diabetes but am not a Diabetic. I am in remission from Cancer but am still a Cancer sufferer. I am in that particular club for life – a long and happy life I hope!
Finally, I must thank Di, my children and my close friends. Without their endless, selfless support I know I would not be here. My life is all the better for this experience and the legacy is a determination to live it to the fullest, to maximise family time and to help fellow suffers where I can.