Patient Story: Liz
Liz was diagnosed with pancreatic cancer in April 2012. She was only 48. Her doctors in the UK prescribed palliative care which led her to seek a second opinion in Heidelberg, Germany.
On the 9th March 2012, I had been for lunch with a friend to celebrate her birthday. Earlier that day I had been to my GP and had a routine blood test. At 9 pm I received a rather strange call from the lab asking if I felt alright, and whether I had any abdominal pain, or was jaundiced. I began to feel a little uneasy, and it seemed strange that someone was calling me from the lab so late on a Friday night. My teenage son needed picking up and while I was out collecting him the lab rang again and suggested that I should go into Accident and Emergency. I started to feel a bit frightened and confused as I had not been unwell and had none of the symptoms they had asked about, but at the same time I knew they must be quite concerned about something showing in my blood results. All they told me was that my liver function tests were very abnormal.
We waited for hours in casualty, and when we were seen, the doctors began asking all sorts of questions about whether I had been abroad, whether I used drugs, had unprotected sex, and whether I had felt unwell, or had pain in my abdomen. I found out later that they suspected some type of hepatitis. Later still I found out that my cancer markers (CA 19-9) were very elevated and that my blood glucose was high, but no one mentioned or discussed these results that night or during the week that I was in hospital. They examined me and took some further blood tests, and admitted me for observation. A week later my Liver function tests had not improved but all the tests for hepatitis had come back clear, and doctors seemed to be scratching their heads a bit.
I was well, eating, drinking, working on my laptop, and just wanting to get home. My liver function tests were proving a bit of a mystery as I had not become jaundiced and an ultrasound scan showed my liver, pancreas and abdomen to look perfectly normal (I was hugely relieved at this but later found out how unreliable this scan proved to be). My doctor asked a gastroenterologist to see me and he decided that I almost certainly had gallstones, which don’t always show up on an ultra sound. It was noted that my bile duct was dilated, and it was agreed to discharge me and book me in for a CT scan.
I remained clinically well until the morning I was due to go home, I felt a little unwell, and light headed. I noticed that I looked a little yellow and mentioned it. They said that my bilirubin was now a little raised but nothing to worry about and the ultra sound scan had probably triggered the jaundice. 24 hours after going home I began to turn yellow and started itching all over. By the following day I had developed severe obstructive jaundice and felt very unwell. I called the hospital and the gastroenterologist called me back and asked me to come straight in for an ERCP. When I woke up the doctor explained that he had fitted a stent and that he had found a “restriction” in my bile duct. I asked what he meant by that and instinctively felt he was withholding something from me, I asked him if he meant they had found a mass or a tumour and he evaded my question, “let’s not rush to any conclusions”. I knew then that he had found something serious.
There was a delay in getting a CT scan and I felt so anxious that the “restriction” may be a tumour (I had researched my symptoms by now) that we arranged for a private CT scan. We had to wait for themulti-disciplinary team meeting (MDT) and a few days later I sat in absolute disbelief as the doctor told me I had advanced pancreatic cancer, and that it was inoperable. It seemed impossible that I could feel so well, and have no other symptoms, or that it was too advanced to operate. I thought about my four sons, and all the things I had left to do, and see, and experience. I was 48. Our lives changed forever that day.
My diagnosis was brutal and offered no curative option, just palliative care. The news was given in front of a medical student and I remember feeling his discomfort. He reminded me of my son who is also a medical student . The consultant seemed uncomfortable breaking the news, and could not hold eye contact. When the tears began to fall he quickly called a specialist nurse, who my husband later told me was a Macmillan nurse. I will never forget her lack of humanity as she suggested we get on with “business” and explained that I would not be able to dye my hair while I was on chemotherapy. It was the last thing on my mind. It seemed to me that both the doctor and the nurse were completely uncomfortable with breaking this shattering news to me and so focussed on business rather than the clear and enormous psychological impact this life changing news carried. From that day nine months ago until now, I have never been offered any form of psychological support which seems extraordinary really.
There was a delay to see the oncologist and a longer delay to start chemotherapy. We researched the prognosis and wished we hadn’t. We tried to find out which hospitals were leading the way in the UK. As I read, I couldn’t comprehend that I was one of the statistics we were reading about and that I had a 3% chance of surviving 5 years. Or that I would probably be dead within 6-9 months, or that survival and treatment had not improved in 40 years. We read about Whipple surgery and this sounded so terrifying that I couldn’t even imagine considering it- not that I had the option, my cancer was too advanced.
Then we began to notice a name that kept coming up, Professor Buchler, in Heidelberg, Germany. His team operated on 70 people per month from all over the world, and everything we read said the only people with any significant chance of survival had surgery. I began to face my own mortality and that I was probably going to die, fairly soon – my husband just kept researching about how I could improve my chance of living. I reeled from day to day, telling my children as honestly as I could what was happening, and they of course hit the internet too, as did friends and colleagues. I could tell when they had done their research because they suddenly couldn’t look me in the eye, the same way the consultant couldn’t.
Getting a second opinion
We asked to speak to the multi-disciplinary team who had decided that surgery was not an option, and asked them to explain this to us. We took a second opinion privately and were met with the same expressions. My husband had become convinced that every day we waited to see the oncologist and every week we waited for chemotherapy, my life was slipping away. He also became convinced from what he read that the only way to get into the 3% of survivors was Whipple surgery. With no hope of this in the UK, we made contact with Heidelberg who agreed to see us the following day. We drove through the night and arrived at the clinic along with patients from all over the world with the same diagnosis. It was humbling. We met patients from Libya, Jordan & Finland while we were there. Sadly not everyone had such a good outcome as me.
The team of surgeons felt that surgery was an option, and were at least prepared to have a look and see what was going on. We went home, and tried to explain to our four sons that we felt this was our only hope. It felt terrifying to face such radical surgery in another country without family and friends, and to leave my precious boys at home, uncertain whether I would see them again. I wrote each of them a letter just in case I didn’t make it home, and I left a letter for every day that I might be away for my youngest son.
I flew out from City of London airport and watched the Thames disappear, and arrived in Heidelberg. On 30th April I underwent an exploratory laparoscopy then surgery which lasted for seven hours. Although the cancer was locally very advanced, and involved arteries and veins, the operation was successful. I had my entire pancreas and spleen removed in addition to usual Whipple procedure which also took my gall bladder, part of the duodenum, and part of my stomach. They also removed some parts of my liver which initially appeared to be involved but later proved to be clear of cancer.
Surgeons were able to resect both the artery and the vein which were involved, and could see no local spread. I was in intensive care initially, then intermediate care, before returning to the main surgical ward on day three. I was discharged after 12 days and stayed locally as an outpatient until I was well enough to return home. It was both amazing and terrifying. I cannot begin to describe the care at the hospital, and we will be forever grateful to the family members who lent us their life savings in order to go to Germany.
Life after surgery
When I was discharged I did not feel anywhere near well enough to fly home, and so we stayed in a local hotel for nearly four weeks. My boys came in turn to visit, and my husband hired a wheelchair and in between nursing me in my bed, took me in the wheelchair to see the sights of Heidelberg. We returned to the UK recovering from Whipple and a total pancreatectomy, and at five weeks post operatively started chemotherapy after initial reluctance to begin by doctors concerned about healing. My life was on the line here, and we were desperately trying to persuade surgeons here to start the chemotherapy. We must have been quite naive initially as never in my wildest dreams did I think there would be a waiting list for chemotherapy but there was.
The regime suggested was 18 cycles of Gemcitabine. We were offered a clinical trial which involved a second drug, and may prolong my life for a few extra weeks whilst carrying considerable additional side effects. We declined this. It was tough, really tough. Still recovering from radical surgery, and trying to manage very unstable diabetes following removal of my pancreas, as well as starting chemotherapy. But I had hope for the first time since my diagnosis. They had found no sign of metastatic spread or disease, and margins were as good as they could have been.
Doctors in the UK didn’t really seem to know what to make of our decision initially as they all believed the prognosis was hopeless. One surgeon here told us that if we had surgery the cancer would be back within four weeks, and if it was his mother he would not consider surgery.
As I write this, seven months on, I am so glad we didn’t listen to him and trusted our instincts. At present my markers are back within the normal range (15) and my oncologist has just seen me before my last cycle of chemotherapy, and would be “surprised” to find anything on my CT scan in January. I am completely realistic about the statistics, but also full of hope, and most importantly I am living not dying. I ride my horse, I work, and I am now planning holidays for when the chemotherapy finishes.
I took part in Cancer Research UK’s Race for life in June, shortly after returning from Heidelberg (some of it in a wheelchair I confess) We raised over £2000 but I was devastated to discover how little of it goes to research pancreatic cancer so I wrote to them and asked that everything I had raised be ring fenced for this purpose, and they agreed. Then I became aware of Pancreatic Cancer Action and felt such a relief that they were doing something more important, campaigning for better awareness, and producing materials to help GP’s recognise symptoms earlier. I find myself feeling so angry at the fact that so many other cancers get so much media attention and money compared to pancreatic cancer. I meet so many people as I share my story that have lost relatives and friends to this form of cancer, and yet still it rarely makes the press, and still receives little funding.
I had been suffering from neck and shoulder pain for nine months prior to my diagnosis and have been completely pain free since my surgery, I didn’t realise at first that this may be connected, however I am reading more and more stories about back pain and links to pancreatic cancer as a result of pressure on the solar plexus. Much work needs to be done in raising awareness and collating symptoms from case studies. I recently found some research papers listing right side neck and shoulder pain as symptoms, and yet rarely see this listed on UK information. In hindsight I suffered what I described as “indigestion” on a fairly regular basis. I had slightly raised blood glucose levels a number of times which was dismissed, and severe hot flushes which were put down to menopausal symptoms and yet disappeared after Whipple surgery.
Like anyone who has been through this surgery there have been real challenges around managing the diabetes while undergoing chemotherapy, and getting used to managing Creon dosage – I have a different digestive process than I did before, but not nearly as bad as I imagined from what I read before [the]Whipple surgery. I live my life day to day and my biggest frustration is why more is not being done to prevent people dying from this deadly form of cancer.
This week I underwent my last dose of chemotherapy and my blood results are good, indicating no concern. I have a CT scan in January. I live in hope that I may join the small percentage of survivors of this devastating form of cancer. I thank Professor Buchler and his amazing team of surgeons in Heidelberg, and thank God I didn’t accept the palliative care offered in the UK.
Liz, November 2012