Patient Story: Karin
Karin was diagnosed with pancreatic cancer age 30, and less than two weeks after giving birth to her son Jethro. She tells her story, in her own words.
We are very sorry to hear today (11/11/2013) that Karin has lost her battle with pancreatic cancer, age 32. A young mum, Karin was taken too soon. We offer our condolences to Karin’s family and friends.
My name is Karin and I was diagnosed on the 23 of February 2012 with a large mass in the head of the pancreas. This turned out to be an adenocarcinoma. I was only 30 years old and just had my first baby – a boy – and had been fit and healthy (to my knowledge) before the pregnancy.
I don’t smoke, rarely drink alcohol and have never done any drugs.
My paternal grandfather had died of pancreatic cancer in his 70’s, but he was a heavy smoker. I also had a maternal aunt that died of pancreatic cancer aged 54.
I am a doctor and am married to a wonderful man, Kevin, with our first child having been born just 13 days before my diagnosis. A lovely baby boy who we called Jethro.
Living with the symptoms
My story starts during my pregnancy. As everyone expects, especially with a pre-existing back problem (Scoliosis), I got some back pains in the middle of my back in my 2nd trimester of pregnancy. I was told that this was related to my Scoliosis and was prescribed pain killers and physiotherapy. I had to stop working as my back pain became debilitating in my 25th week of pregnancy. The back pain continued to get worse and I was prescribed heavier painkillers and was told to attend for massages and acupuncture. All of these helped a bit until the pain got worse again. The last resort for my “back pain in pregnancy” was a TENS machine. This helped if I put it on its highest setting so I wore it 24×7. When I reached my 34th week of pregnancy I had another very bad period of back pain and was told to attend the maternity services. They were worried that I had gone into early labour. While in the department I started itching really badly so they did some blood tests. Turned out my liver function was going off just a little bit. I was admitted that night.
After an ultrasound scan of my liver and a whole battery of tests which all came back negative it was decided I had cholestasis of pregnancy (liver disease in late pregnancy). I remained in hospital and my liver function was checked daily. It continued to deteriorate and I started getting jaundiced. At 35 weeks of pregnancy I was canary yellow and terribly itchy so they decided to deliver my son early to try and deal with the liver.
Thank God I had a healthy baby boy by cesarean section on the 10th of February.
After delivery I was told that the liver may take a few weeks to return to normal and was discharged home after 4 days. I was seen by the community midwives who obsessed over breastfeeding and were mostly interested that I am passing urine and opening my bowels, but completely failed to register that I was telling them that I was feeling worse and that my bowels were increasingly abnormal. I was losing weight rapidly and wasn’t absorbing any of my food. Since delivering my son I had lost 20 kilos. After a week of these fruitless dealings with the community midwives and being discharged by them to be followed up with a totally unrelated blood test in a few weeks, I went back to the maternity unit asking for more blood tests in preparation for my out-patient appointment on the following day and went home.
I got a phone call at 8.30PM that same night from the maternity unit saying my liver had deteriorated significantly and that I should come to the hospital straight away. While my husband was listening in on this phone call he walked around our bed and found our son who was lying in his crib going blue in the face and not breathing. So while I was still on the phone to the hospital about my liver I started CPR on my 1 week old son. In those minutes I felt like my life was over. My colleagues called an ambulance from the other end of that phone, autopilot took over and I don’t know how but my son started breathing again by the time the paramedics arrived. We both went to hospital together in the ambulance that night with my husband following in the car. Our son was kept in the paediatric unit and my husband stayed with him while I went to the maternity unit alone with my worries about my baby and my own failing liver.
After 24 hours our son was discharged and has been fine ever since. He’s thriving and the joy of my life!
Both my son and my husband joined me in the maternity unit where we were to spend the next 3 weeks. I had all the liver tests repeated and was booked for a repeat ultrasound scan. By this time I was truly a deep yellow with my jaundice, had radioactive-looking pee and was absorbing absolutely none of the food I was eating. I had lost loads of weight since delivering my son and had a bone-deep itch all over my body. This second ultrasound scan showed only mild dilation of the common bile duct and it was thought that gallstones were the cause. A MRCP was done immediately after the ultrasound scan and this is where they first saw the mass in the head of the pancreas. By that time my parents and sister who all live abroad came to spend most of their days in hospital with me, too.
My obstetrician and surgical colleagues came into the room together to tell me that there was a mass in the head of the pancreas. In that moment my heart dropped, my life shattered in front of me and the first thing I thought was what I had been taught at medical school that “Painless jaundice is cancer of the pancreas until proven otherwise”. No one wanted to believe this diagnosis, not the obstetric consultant, not the consultant surgeon and definitely not the gastroenterologist. I was told it could be an auto-immune condition, it could be lymphoma but no one wanted to believe that a person like me and at my age could get pancreatic cancer without the lifestyle of substance abuse that usually precedes it. The cancer was 4x4x4cm big at that point.
After being diagnosed I got a staging CT scan done and had to have a blood transfusions as my blood counts had dropped. At this point it looked like the mass in the pancreas was the only abnormality.
In the end the surgeons in the district general hospital where I had been diagnosed decided to refer me to the specialist pancreatic team. I was transferred to their hospital the same week.
Once under the care of the specialists, I got an Endoscopic Ultrasound Scan (EUS) done where they took several biopsies to diagnose what type of mass this was and a few days later was told what I had suspected all along – I was diagnosed with a well differentiated adenocarcinoma. Because I was still very jaundiced and itching like crazy, it was decided to put in a metal stent where the cancer was causing obstruction of the common bile duct. This was to relieve my jaundice. I was told that I was a 1 in 10 million case and that there were actually only about 15 cases worldwide documented that could compare to mine…
My surgical team at the Glasgow Royal Infirmary was amazing. They were researching and liaising with other pancreatic teams worldwide to see if there was anything new and better available than the standard procedures they were used to. They wanted to cure me, not just give me more time. So after having discussed my case thoroughly they decided to go for neo-adjuvant chemotherapy (chemotherapy before surgery) first and then proceed with surgery once things had shrunk down.
At the meeting with my clinical oncologist we discussed all the options and chemotherapy regimens available. The surgical team had found a newly tried chemotherapy regimen for pancreatic cancer that seemed to have very good outcomes (when compared to the dismal statistics for pancreatic cancer). It is a combination of intravenous Folinic Acid, Irinotecan, Oxaliplatin and 5FU called FOLFIRINOX. This would be administered every 2 weeks. Unfortunately I had to wait for my liver tests to normalise before I could start with chemotherapy. So the wait was on.
During this period of waiting I had a PET-CT (a scan using a form of radioactive glucose) scan done. Unfortunately they found active spots in the liver on this CT and so I was sent for a specialised liver MRI. This confirmed the worst possible – I had liver metastases. Not only did I have 2 big metastases in the right lobe of my liver but I also possibly had multiple micro-mets in the left lobe of the liver. I had just managed to pick myself up after getting the diagnosis and here was yet another blow. With liver metastases I was now an inoperable case. I was devastated. I used to look at my son and husband and cry. I felt like I would never see my son grow up and that I was letting my husband and son down in the biggest way possible. Being a doctor myself I know all the statistics and how dismal my outlook is. When I spoke to my surgical team about it they spoke realistically but gave me hope that the chemo would shrink the liver mets, hopefully enough to allow for liver resection as well as surgery for the primary cancer. They showed me the figures for the FOLFIRINOX regimen, especially in the group of patients who had metastases and it made me feel a bit more positive. I would beat this cancer and not let it get in the way of living my life.
My oncologist was cautious in the discussion of this chemotherapy regimen at first as it had never been used in Scotland before. But we decided to go for it together. I will never forget that he was willing to go down this unknown road with me to give me a better chance. He took all the precautions to try and make the regimen as tolerable as possible and gave me the confidence to step up to the plate to start my fight.
Finally my liver tests normalised and I could start chemotherapy. My first cycle started off badly – I had been pricked with needles so often these previous weeks that they couldn’t get good vascular access for the chemo to run through. I was lucky as the vascular access team decided to squeeze me onto their list to insert a PICC line. So off I was sent to get this done. Well, my body had decided otherwise. After 3 hours in that department with countless attempts to get a PICC line into my arms the nurse decided to insert a Hickmann line instead. Success on the first attempt. In those 2 hours I had been reduced to a crying wreck. I was ready to go home not to get my first chemo… But the nursing staff was extremely nice and my family was there for support and I managed to pull myself together enough to get my chemo.
Overall I think I tolerated the chemo surprisingly well. In total I got 9 cycles of chemo. I would feel like I’d been hit by a bulldozer the first night of my chemo. My husband and mum would take me home that night, undress me and tuck me into bed. The next morning I would already be a bit better and I would get steadily better from there. I would then self-inject the GCSF (Granulocyte-Colony Stimulating Factor – used to stimulate the bone marrow to produce more white blood cells which can become depleted whilst on chemotherapy) for the week after chemo – this was so my bone marrow would be stimulated to produce more blood cells so I wouldn’t be so prone to serious infections.
Dealing with the side-effects
I didn’t suffer too much nausea and it was very manageable with anti-emetics (anti-sickness tablets). I didn’t have any diarrhoea at all. My taste and sense of smell changed though and that was quite challenging. I had to add lemon or juice to my water to get some taste back and shunned quite a few foods which I had previously eaten without a problem. I still managed to keep eating though and always managed to regain the weight I’d lost at chemo within the following weeks. Another side-effect from the chemo was that at first I would get some tingling in the hands and feet if they were exposed to the cold. Towards my 9th cycle this altered sensation became permanent and got worse even after the chemo stopped. I have now lost the feeling in my hands and toes and they constantly feel like they’re asleep (this is sometimes referred to as peripheral neuropathy).But if I manage to survive in the long run then this is a small price to pay.
I also lost most of my hair. On the days I was taking the bone marrow injections I would have some back pain or pain in the long bones (arms and thighs mostly). My back pain, which was now correctly identified as pain from my cancer, was gone after the first chemo. That was a very welcome relief. So overall my chemo was all very manageable. The first time it was a big scary thing, but then I knew what to expect.
Sometimes I lie awake at night and “speak” to my cancer. I tell it to get the hell out of my body – there’s no place for it in me. I don’t know if it works, but it helps me hang on and fight.
I managed to get away to visit my extended family abroad in between chemo’s and this gave me a huge boost for my morale. I’ve experienced lots of love and compassion, lots of gestures of friendship and encouragement from the most unlikely corners since I was diagnosed. I am ever grateful for that. My dear friends and family, you cannot know how much it means.
During my chemo I had repeat scans every couple of weeks. The first scan was only after my 3rd cycle of chemo and everyone was very surprised that there was already significant reduction in the size of the primary tumour and the 2 larger liver metastases. The micro-mets in the left lobe of the liver had disappeared! I was ecstatic about this news as it very tentatively potentially put me back into the operable category. My scans continued to improve with continued shrinking of the pancreatic tumour and metastatic spread limited to the right lobe of the liver and these secondaries were shrinking too.
Referral to a new pancreatic cancer unit
Seeing how my liver was affected, too my team decided to refer me to another pancreatic unit that also excelled at liver surgery to give me the best possible chance at surgery and survival. When I first met the lead surgeon there he was very cautious, quoting all the bad statistics for pancreatic cancers, their surgery, mortality rates and all the horrid things I already knew myself about pancreatic cancer. But despite all this he was willing to offer me surgery if certain criteria were met. I was so relieved that I was back in possibly operable territory! He outlined the plan that after my last chemo a few weeks would have to pass to allow the chemo to drain from my body. Then he would do a portal vein embolisation (PVE) procedure which would hopefully lead to the good part of my liver growing so that after 4-6 weeks when it had grown enough I could get the Whipple’s procedure as well as an extended right hepatectomy (chopping off of the diseased part of the liver) in one go.
I had some more scans a few weeks after the chemo was done which showed continuing shrinking in both the size of the primary and the metastasis. This was what I had been waiting for to get the PVE in preparation for the big surgery!
Unfortunately my father-in-law passed away a few days after the scan. This hit us very hard, especially with us living abroad. We managed to make all the arrangements and flew home.
Undergoing a Portal Vein Embolism (PVE)
We got back from abroad the day before I was due to be admitted for the PVE. So I unpacked my luggage and packed my hospital bag instead and off we went to get this done. In my head this was always the “small procedure” before the big surgery. But in the end they fiddled around with my liver for almost 4 hours! Not that I felt much as they sedated me for the length of the procedure. It was deemed a success and I was discharged home.
I was recovering well when on the 6th day after the procedure I just didn’t feel “right”. I asked my GP to come out who couldn’t put his finger on what was wrong and we agreed that we would wait and see what happened. By 6PM that night I had a raging fever of 39.9 Celsius. Needless to say we went straight to hospital. There the suspicions were that this could be infection from my Hickmann line, from the liver after the PVE, biliary sepsis…
After more scans, tests, heavy antibiotics and removal of my Hickmann line, it was thought that I had a nasty gram negative infection, most likely from the line. I had been on heavy antibiotics since admission with my temperatures still spiking every now and then. At least a repeat CT scan showed that the tumour has continued shrinking even though my last chemo was now almost 2 months ago. This gives me hope that I will proceed to surgery yet. After almost a week of this nothing conclusive was found why I had had this fever and was discharged on oral antibiotics.
Through it all my family, in-laws and friends and above all my husband have been amazing. My mum gave up her job so she could be on stand-by to hop over from Brussels on my chemo days and back again to support me and my husband with the care of our new son on those days or whenever crisis hit. My dad and sister came for support when their work allowed. My husband’s work has been very understanding with us, letting him work from home. This has allowed him to be an amazing carer to both me and our son. My father and husband have also been doing daily and tireless research into treatments, alternative therapies, new research and keeping my spirits up with survivor stories. My mum was always there on the end of a phone, ready to hop on to a plane when a crisis moment struck or when another chemo was due. It helped a lot knowing she could be here in a few hours. My family, friends, parish and even people who don’t know me at all are apparently praying for me to regain my health. This has been an amazing and humbling experience.
One phrase that I picked up somewhere and that stayed with me is this: “after being diagnosed with cancer, every day after that diagnosis you’re already a survivor”. This has helped me keep positive. I also keep telling myself that “where there’s life there’s hope”. I plan on living for quite some time yet and I’ll prove the statistics wrong. According to statistics I shouldn’t have gotten this cancer in the first place after all!
To be honest, this waiting is the hardest part of it all. Now that my chemo is complete and the PVE done I have to wait for the liver to grow, wait for the surgeons to discuss my case at their team meetings and let them to decide whether to operate or not. And all that time I’m doing nothing and the cancer could be growing and spreading again…
Karin, September 2012
Updated 16th December 2012
So the PVE was done and I had overcome another hurdle. Now it meant waiting for the liver to grow sufficiently for surgery to be performed. My husband had by now done countless hours in internet research and started me, with approval from my oncologist, on a mix of supplements of antioxidants.
After 5 weeks I got a repeat of my scans done which would determine if I would proceed to the next step – a staging laparoscopy to assess the situation “on the ground” and under direct vision. The scans were done and this is the first time that chemotherapy-induced steatosis (fatty liver) of the liver was mentioned. I worried, but thought the liver is growing so it shouldn’t be a problem.
While we were waiting for the future liver remnant volumes to be calculated my Edinburgh surgeon decided to go ahead with staging laparoscopy in preparation for possible surgery.
So a date was set. Kevin and Jethro booked into a hotel for the night of the procedure to be close and off we went to get this done.
The laparoscopy went by without major incident, but left me very upset as the surgeon said my liver was very very fatty in appearance, to the point where he wasn’t sure I would survive should he go ahead with liver resection. He said he had taken some biopsies but was very concerned that the quality of the liver was not up to the planned procedure. On the positive side, he said the disease appeared stable and there was no peritoneal spread (spread into the abdomen).
Having been given the run-down of the highly risky proposed surgery and knowing the horrid alternative, we rushed to make our wills and Powers of Attorneys. Another harrowing experience, having to think of disposing one’s assets and securing pensions and moneys for the event of my death.
By this point all my emotional reserves had been exhausted and I can tell you that I hit a low point. I saw only obstacles. My surgeon wasn’t very hopeful either and kept insisting that at most he’d be operating to gain me some years, never cure. He told me that he was afraid of robbing me of the years I have by proceeding with surgery and generally made me feel miserable and hopeless.
I took the opportunity and went home to Malta to start setting up my apartment, if not to enjoy myself, then at least to leave a legacy of my tastes of furniture and of self for my husband and child in the future.
I can still remember clearly one evening at my aunts’ house where I was asked if I wanted any milk in my tea. And I remember being offered the long life milk and me thinking and even saying – no mine is all “short life”. I was in a crisis of faith but was still hanging onto the hope that I may be offered surgery with a despair of a drowning person clinging onto driftwood for survival.
Getting a Second Opinion
I had gotten in a second opinion who had proposed staged surgery. So my hope was hinging on that: deal with the primary and get that bad boy out and then deal with the liver later once it regenerated.
During my time ordering my kitchen and getting suppliers to give me ideas and trying to get everyone to commit to as quick a delivery as possible, not knowing how much time I have left, gave me back some of my hope and brighter outlook. I felt replenished and must even admit that at times it was fun. I spent some time in our apartment and felt good being surrounded by the love of the family and friends.
Facing being in-operable
I got back and was ready to face this surgeon. I was young, otherwise healthy and had a child under 1 year. This surgeon could not refuse me potentially life-saving surgery!
I was barely through the door when he said he doesn’t feel he can offer me surgery. With him it was all or nothing and all was not an option right now as my liver was too damaged. That by doing staged surgery he would be putting me through major surgery that might shorten my life and severely impair my remaining quality of life and I may never make it to liver surgery in the future.
Good bye, go home to die, and by the way – sorry for calling your son a girl.
I was shell-shocked. Devastated. My world had ended.
In the car on the way home instinct took over and the first thing I did was call my Glasgow team asking for an urgent urgent call back. I was barely coherent on the phone to the poor specialist nurse. As soon as I arrived home I started writing emails to specialists asking for second opinions in Liverpool, Southampton, Malta. The Pancreatic Cancer Action Charity founder Ali Stunt was simply amazing. She called me, went through what had been said and organised introduction to another specialist in London.
I called my Oncologist Dr Grose, who spontaneously spent an hour on the phone with me, going through possible scenarios, options and ways forward. In the end he too admitted that staged surgery would be something he could support and he would provide me with chemo to stabilise the disease post-operatively until the liver could be dealt with. That gave me renewed faith, I knew I was asking for nothing short of a miracle, but it seemed a little more achievable after that phone call. In the medical world there’s no prejudice like having been refused surgery in one place, to be refused at the next!
Those days are days I don’t wish on anyone. The days were filled with activity, writing, phoning, mobilising everything and everyone to get a chance, a shot at surgery and the nights filled with bone deep despair. I spent a whole week crying. I didn’t know one person could shed so many tears.
My husband and I prepared a whole sheet of questions and backing up all our arguments for staged surgery with medical articles and evidence in preparation for when we would meet with these other doctors. I used to look at my husband and in my head see him crying over my grave. I used to look at my son and give my husband lists of things to look out for when he is growing up. I used to look at my parents and say sorry for making them worry and in anticipation of putting them through my dying.
I was invited to speak to my surgeon in Glasgow, Mr Mackay before his clinic that same week. We got in and he could see we’d had a rough time. I took my little son with us that day so he would see our little family that was being left to die. We went over the reasoning from Edinburgh. And then I started to present my case in favour of staged surgery. We discussed the ethics, the technical difficulties, discussed mortalities and the possibility of morbidity post OP. I said to him, I didn’t care what happened intra- or post-OP as surgery was my only potential chance at survival. Without surgery I would die anyway so I had nothing to lose. When he decided to look at my most recent scan pictures, now done over a month ago, I asked him for copies of them as other surgeons needed them to assess whether they would operate. At that point he turned around and said – Wait a minute – if anyone is going to operate I would prefer it would be us here in Glasgow. I couldn’t believe my ears. I stuck my paper with questions and arguments in my pocket and from there on, an hour later, having reviewed all my scans on the spot again with the radiologist too, he thought it could be done! My relief was so unbelievable. I didn’t dare allow myself hope! He put one condition on me – that I have a repeat scan and if that still shows that the tumour is resectable then he would go ahead and remove it 10 days later.
The date of the scan arrived for the Wednesday, their meeting was Thursday. I was so nervous I couldn’t sleep, eat and was a nervous wreck. I couldn’t stand it any longer and called my oncologist who was delighted to tell me I was going for the Whipple’s the following Tuesday!!! My chance had come. What I was so desperately fighting for was finally going to happen. The next day I had my surgical pre-assessment. On Monday evening I was admitted and on Tuesday I got the surgery. I never asked what he would take away and how. What did it matter?! As long as that bad boy cancer was coming out I would deal with whatever was left afterwards.
Mr MacKay operated on me for 10 straight hours and he says I nearly killed him in the process. I will be forever grateful to him for performing the surgery on me! He took away my Gallbladder, my head of Pancreas, part of the Portal Vein and my Duodenum.
Having had all of these procedures done now I can honestly say that nothing quite compares to having a Whipple’s! I was lucky and started on an enhanced recovery programme and got home on day 6 Post OP, fully mobile and well on my road to recovery.
I was invited to return to discuss my pathology results and all my lymph nodes are clear, my venous system is clear and all resection margins except for the one bordering the superior mesenteric artery (the least worrying margin) are also clear. Miraculously, my liver mets (cancer spread to liver) seem to have disappeared on my last pre-OP scan and an ultrasound done on the exposed organ during the operation also failed to demonstrate any metastases. So for now I am at least radiologically CANCER FREE!!!!
Now I must recover my strength again before things get re-assessed in a few months. But I am now at least hopeful that I am getting my fighting chance at cure.