Patient Stories – Choriocarcinoma

Jennifer’s Story

I am 36, South African and living in Stellenbosch, the wine district of Cape Town, with a great husband and two healthy boys aged 6 and 4. It was October 2006 and I was helping my mom out at the annual flower show collecting money for the local hospice and feeling so nauseous. Mentioning this, my mom thought I might be pregnant, although it seemed highly unlikely as I was on contraception and we weren’t planning a third child. I did the normal home pregnancy test which was positive, asking advice from the chemist she said the best was a blood test as this shows the amount of hCG hormone in the blood which can tell how far you are.

The results came back and I was 5 weeks pregnant obviously that came with another set of emotions. I took myself off to the gynecologist for a check up who said that I was definitely not pregnant but perhaps it was an ectopic pregnancy on the ovary and after performing a number of scans and blood tests to check the levels (to low to be pregnant but not high enough for concern if it were cancer it should be in the thousands) he sent me off to the specialist.

The specialist confirmed that it was an ectopic pregnancy which would explain the hCG and gave me a course of methotrexate which should remove the cells and reduce the hormones back to normal. The results didn’t change so on the 16th Dec I went for a laparoscopy to check the ovaries etc from the inside where again they found nothing.

By this time I was beginning to get concerned as your body does not produce a hormone for no particular reason, I needed to find out why. We have a friend in the UK who had just gone through a similar story and was diagnosed with choriocarcinoma. I started doing some research and the similarities were scary. I found a website that was very informative about choriocarcinoma and what could be the causes of an elevated hormone level. There recommendation was to do a uterus ultrasound scan, CT scan of the lungs and abdomen followed by an MRI of the brain.

We then did the CT scan which is when they picked up the nodules on the lungs. It was the 23rd of December and they wanted to operate on the 26th this was happening all a little too quickly I needed information and fast. I contacted this friend and she put me in contact with the Charing Cross Hospital choriocarcinoma unit who were a wealth of knowledge and very helpful. It had taken 2 months to find the problem, I then took the decision to wait till after Christmas and New Year to operate and enjoy the festive season, we were going away for a few days and I knew the boys would be devastated if we cancelled.

I underwent a thoracotomy (Lung Surgery) on the 4th Jan where the main nodule on the left lung was removed and sent to the lab for analysis, we had also organized with the UK that slides would be sent to Charing Cross Hospital for a second opinion and to confirm the results of the pathology lab here. The operation was extremely painful leaving a scar running along the rib cage of about 20cm. The blood levels taken after the operation returned to normal immediately which was great news. There were still two remaining spots on the right lung although I had no elevated hCG. I then had an MRI brain scan to check that the choriocarcinoma had not spread which came back all clear.

My case wasn’t at all normal at least not in South Africa and was classified high risk as my last pregnancy was 4 years ago and that the cancer has spread to the lungs. The normal protocol for choriocarcinoma patients is to give chemotherapy until the hCG level returns to normal and then give a further 6 week course as a prevention measure. We decided to proceed with 6 weeks chemotherapy and the recipe EMA-CO after much discussions between doctors, pathology and the UK once again their assistance being invaluable. I finished my last session on the 5th March the day before Matthew turned 6 which was a great milestone and a happy day.

During the chemo I tried to keep life normal as possible for my own sanity and strength but also for my boys who are too young to understand. My close friends and family knew what had happened but I hadn’t made it public knowledge. The reality of what is happening or what has happened really starts to sink in when your hair starts falling out and the public around you know there is something wrong, you can no longer be in denial and have to face the bare facts. There is no more hiding that all is ‘fine’, you have been sick but a very positive attitude will get you a long way because behind every negative there is always a positive.

Since completing the chemotherapy my hCG level has remained normal and I have returned back to my normal life. My doctors tell me that I am almost certainly cured as relapse at this point is extremely unusual.


Vickie’s Story

My story began on the 13th August 2011 when my waters abruptly broke at only 26 weeks of pregnancy. I obviously knew that something was wrong, but there seemed to be no explanation at the time and I was just grateful that by some miracle I managed not to go into labour for a further six weeks. On the 20th  September 2011 my amazing baby boy Oliver was born, weighing 3lb 13 oz, and (so we thought) putting an end to the anxiety of the previous weeks.

Unfortunately, my relief was acutely short-lived, as my placenta failed to follow Oliver out of the womb. An MRI confirmed that my placenta was firmly stuck to my uterine wall and after four days of deliberation by the doctors, I was suddenly undergoing extra blood tests to measure my ‘hcg’. It was following these tests that I was informed that I needed to be transferred as an emergency case from Coventry to Charing Cross hospital.

The next 24hrs were much of a whirlwind and probably the most difficult of the entire journey. I had been told by my obstetrician to expect a cancer diagnosis only as a worst case scenario; however after undergoing scans and with my hcg measuring 32,000, Dr Savage confirmed that I had a gestational choriocarcinoma – a malignant tumour arising from the trophoblastic cells of the placenta. Although there was some hesitation due to the rarity of my circumstances and timing of diagnosis (the disease is usually found later than this), I commenced emergency chemotherapy on 25th  September 2011, and was kept in hospital in London for a further two weeks to begin the EMACO chemotherapy regimen.  Those two weeks apart from Oliver were probably the longest and most tortuous of my life.

And so ensued nearly four months of weekly chemotherapy and living life from one hcg test to another, hoping each time for a significant fall and the magic words ‘It’s less than 4’. This finally came towards the end of November 2011, coinciding with significant hair loss and the donning of ‘the wig’. Losing my hair was the hardest part of treatment, but was countered with a long glamorous blonde number which in all honesty put my own hair to shame. I finished chemotherapy at the beginning of January 2012, and was finally given the all clear in terms of uterine scarring and ability to have further children in October 2012.

My story encompasses the most challenging year of my life – juggling a newborn premature baby and cancer treatment is not an easy task, and one that I reflect on with astonishment. There were inevitably times (almost daily) that I felt myself being sucked into a vacuum of despair; however, I am very lucky that I have an amazing family, wonderful friends, and that I was in the hands of such a talented consultant in Dr Savage. I cannot say in any terms that this was the worst year of my life though, quite the contrary; I feel blessed that I had a bundle of hope in Oliver which made me grit my teeth and ‘get on with it’. Many others with my diagnosis have not been so fortunate and they have often been in my thoughts.

I know during my journey, I spent hours scouring the internet for stories of hope, and evidence that there really can be life after cancer. And so the point to my story is this: Oliver is now 18 months old and continues to amaze me. I am 15 months post-treatment and despite feeling utterly impatient to have my hair past my shoulders again, I am well. If you are reading this because your life has been touched by this horrible disease, please take hope from my story that you will get well. Get off Google, listen to Dr Savage, take all your anti-sickness pills on time and keep the faith. I wish you luck x

Laura’s Story

Hi. So after eight years I finally feel it’s time to tell my story. If you’re going through this I really hope it helps you to see the light at the end of the tunnel. Keep strong and fight.

My partner and I had been together for 13 years and decided it was time to make a family of our own. We had our first child in 2011. I was 28 years of age. My pregnancy was good, I loved carrying my little baby. He was very comfortable in there and didn’t want to come out, he was eight days late. Two days of labour, two epidurals and finally pulled out with forceps. The midwives and doctors didn’t mention anything about the placenta so I assume it was intact but tiny cells must have detached somewhere along the way.

Fast forward to my baby being seven weeks old. I began having headaches. I went to see my GP who didn’t examine me, just asked questions. I was told it was my hormones and sent on my way with pain relief. A few days later it was still getting worse and I was throwing up, not good when trying to breast feed, still the GP’s weren’t concerned and gave me more pain relief. I wasn’t getting any better and I must’ve gone to the GP at least five times with no help or investigation.

My baby was nine weeks old to the day, it was a Friday, I couldn’t stop being sick, I was extremely tired and in pain from the headache. My tummy muscles hurt from vomiting and I’d had to go buy milk for my baby as I wasn’t producing enough for him. I had gone to the bathroom to vomit and I was in agony in my torso. I told my partner to phone an ambulance and get one of my friends to come look after the baby. The telephone operator said I didn’t need an ambulance according to their computer. My friend came round, looked at me and phoned back. By this time I was on the floor unable to move. She got me the ambulance.

I was taken to hospital and constantly got asked if there was a chance I could be pregnant. Now I know why, my hCG levels were through the roof. They did a CT but weren’t sure what was going on. They asked me if I wanted an operation to investigate or just wait and see if I got better in a few days. I said investigate, something is definitely not right. They did three keyhole incisions in my abdomen and took samples from my liver and my kidney and sent them over to Edinburgh to be tested. The consultant looking after me was doing his own investigation whilst waiting for the test results and came across trophoblastic disease. He got in touch with Charing Cross and between them they figured out what might be wrong with me.

I was flown down to London on Valentine’s Day which was the Tuesday after going to A&E. My mum had come up from Yorkshire to look after my baby and she then took him to her house. I was semi-conscious by the time I arrived at Charing Cross and my amazing doctor put me straight on a really strong dose of chemotherapy as soon as I got there. He saved my life, I think I may have died that night.

I met my consultant and the specialist nurse who tried her best to explain what was wrong with me and reassure me. I will never forget those ladies, they are amazing. I had MRI and CT scans that uncovered that I had tumours on my brain, lungs, kidney, liver and spleen. The doctors came up with a chemo plan which started pretty much straight away but there were a few complications along the way. One day I suddenly had half of my vision go grey and I reported it to a nurse. Another scan was ordered and the result was that the lesion on my brain had started to bleed. There were discussions of surgery but it was decided that we’d let the chemo do its job and shrink that tumour. This has left me with a field of vision deficit (small price to pay really). The results of my hCG levels were doing great and pretty much kept reducing by half with the chemo in the first couple of weeks. However after three weeks in bed I developed a clot on my lung so had to have treatment for that which continued for a few months. If this wasn’t enough my spleen then blew up to the size of a football, bleed from the artery. Surgery this time. I was awake whilst this was taking place, very scary. This was another doctor whom I owe my life to, apparently what he did had never been done before. After all this I feel the worst part of all of it was being apart from my baby but I knew I had to keep fighting for his sake and that he was in safe hands while I did so.

As I started to get a bit better I wanted out of hospital. After seven weeks in total I was discharged to my mum’s house. My muscle mass had deteriorated significantly and I found stairs a challenge. I had to crawl up and bump back down on my bum. I had to get to know my little boy again and him me. It didn’t take long. My partner, mum, step dad and best friends were supporting me every step of the way. I will be forever grateful to them. Every week I made the trip to London from Yorkshire for treatment, platelet transfusion most of the time and chemo. I found out that Sheffield had a specialist department and eventually I convinced my consultant to let me have shared care. So my trips to London reduced to fortnightly. My hair fell out, I didn’t bother with a wig and got some bandanas instead. If you’re going through this you’ll be surprised by how much you rock that bald style and how many people compliment your features. Also take the advice of drinking lots of water, the mouth ulcers can be bad.

My hCG levels became stable and at a suitable level and I got the all clear in August if I remember correctly. What a relief, no more phoning the mole office twice a week for results. I had to go back a few months later for scans just for a checkup. We sold our flat in Scotland and bought a house near my mum. The bond she developed with my son is unbreakable and it’s lovely to see them together. I had some counselling. I think the guilt of having to leave my baby was what I had to work through.

Three years later I found out I was pregnant again. My mum thought I was very brave (or mad) for even considering having another baby. I was straight on the phone to my new GP who was amazing, she booked me in for a blood test which came back with a little bit high hCG levels. Her words were “we either have a problem or a really strong baby” I got an early scan and there was a little heartbeat. EXCITING! Another little baby boy. No complications this time, perfect pregnancy before and after. He’s four now and a little whirlwind. My kids don’t know about any of what happened, they don’t need to. If they ask when they’re older, I’ll tell them the best way I can.

I have some lasting side effects from my personal experience. The visual defect, occasionally I get a niggle in my side where my spleen is. But most of all whenever I think about it I can’t not cry. I have to send urine tests for life but again that’s a small price to pay.
I’ll always be grateful to the doctors and nurses who looked after me, my friends and family for supporting me through that time and since. I’m so happy that I have my little family and glad I can be here to watch them grow. See!! There is light at the end of that tunnel.