Patient Stories
Molar Pregnancies
Kirsty's Story - Partial Mole
I knew from the second I looked at the screen that something was very wrong. It was May, 2006, I was three months pregnant and this was my 12 week scan.
"I'm sorry," said the woman gently, "There is no heartbeat." Me and my husband had planned this baby and were both delighted when I fell pregnant the first month of trying - no small feat at the age of 37.
I had some bleeding in early pregnancy and two previous scans had shown a 'normal' foetus. When I began to feel less nauseous in the run up to my 12 week scan I thought it was because I was entering the fourth month. The fact that I now know that baby could never have survived does not make the loss any easier.
The days that followed were among the worst of my life.
I went to Chelsea and Westminster Hospital to have an ERPC, was treated with as little care as I have ever received and was given a garbled explanation from the consultant about what had happened. He mentioned Molar Pregnancy, said it was a form of cancer but that it was removed and there was nothing to worry about.
I had already suffered two previous miscarriages so when the consultant said he was referring me to a specialist clinic I assumed it was to investigate that.
I was knocked sideways when the first letter arrived from Charing Cross Hospital's medical oncology department - and very frightened. I spent several ill-advised days researching Molar Pregnancies on the internet and getting into a panic about worse case scenarios. Unfortunately this website was not up and running a year ago so I ended up reading research papers, magazine articles and scant explanations on medical sites. The net result was complete confusion and fear.
I lived like that for four months - terrified that I would need more treatment that would eat away at my chance of ever having children and devastated every time another friend announced their pregnancy. Then I was fortunate enough to attend an Open Day at Charing Cross where I got the chance to meet other couples who had experienced Molar Pregnancies and talk to the experts.
It was only then I learnt the true (and extremely low) risk of needing any further treatment and managed to put my Molar Pregnancy in perspective. I was very lucky. I had a Partial Mole, my hCG levels had fallen very quickly and stayed low. After six months we could try again.
Against the odds, and my age, I fell pregnant again the first month of trying. I panicked throughout the pregnancy and was literally sick with fear on the days of my scans. But my pregnancy was without any complications and my beautiful and healthy boy was born this May. In a year I have gone from total despair to complete joy.
I still feel grief for what I consider to be a lost child.
And I still feel anger about how I was treated in the days that followed that dreadful scan.
If it had not been for the staff at Charing Cross I would never really have understood what happened to me and appreciate my relative good fortune.
As a journalist I believe it is impossible for anyone to make sense of a terrible situation without a true understanding of what has happened. And that is why this website is so valuable.
Kirsty
Caroline's Story
It is with pleasure that I write my "story" for this website given that it has such a happy ending. I hope that it will give others who are or have been through similar experiences hope.
I am a New Zealander and in 1999 I moved to London to do my "OE" (overseas experience). I intended to stay one or two years but ended up living and working (as a corporate lawyer) in London for seven years until mid 2006. In February 2004, my now husband Marty (who is also a NZer) and I flew home to New Zealand to get married and straight away we tried to start our family. A few months later I was thrilled to discover I was pregnant. All went well (other than some terrible morning sickness) and we went along to our 12 week scan very excited that we were going to see our baby. Not only was there no foetus but the sonographer looked very concerned, she called her supervisor in and they told me it looked like I had a molar pregnancy, something I (like most people) had never heard of. When they explained further what it was we were devastated not only to have lost the pregnancy but also to try to get our heads around this awful "thing" I had inside me. I had a d&c the next day and regular bloods to measure my hCG. However, after 6 weeks of bloods my histology finally came back and I was told that there was no evidence of molar change and that I had not in fact had a molar pregnancy but a blighted ovum (a relatively common form of miscarriage). I felt like I had been on a rollercoaster of emotions - I was shocked at this news but also relieved.
We waited a month and then started trying again. In May 2005, I suffered from a miscarriage and had a d&c as a result - this time I didn't even know I was pregnant, I had had no morning sickness and had even had a period (albeit a very light one). The consultant who performed the d&c knew about the previous suspected molar pregnancy but said he had not seen anything abnormal in performing this d&c. Due to being in hospital I missed my plane home to NZ to my sister's wedding but managed to get one a few days later and got there in time (although not feeling the best)! Upon returning to the UK, the consultant said he wanted to see me. He sat me down and asked me if I knew what a molar pregnancy was! We were horrified. He told me that this time I had had a complete molar pregnancy and that it was conclusive from the histology. This time I asked to go and see someone at Charing Cross Hospital (CXH) and we went there that day and met with Dr Savage to discuss what a molar pregnancy was and how they would monitor me.
The hardest thing to cope with at this stage was not what was happening to me then but that we would have to wait 6 months or a year to try again. I felt beside myself. At this stage I was almost 34 years old and of course all my friends were producing like mad! I felt so angry and cheated that this was happening to us, we were good people - what had we done to deserve this when bearing children seemed to come so easily to everyone else?
I had regular bloods to test my level of hCG. At first my hCG level dropped but then it started to rise. I was rung one Friday by the wonderful ladies at the CXH clinic and told that my results were out of the range they expected (they didn't say in what direction) and they wanted to redo them. We have a very long wait over the weekend for the results but when my husband rang on Monday morning he was told my hCG had increased significantly and that I needed to come back in to CXH for a second blood test. I guess this news still didn't sink in as I went into the hospital on my own (my husband was working down in Canterbury) only to be told by Dr Savage that if they confirmed my hCG had increased he would need to admit me to commence a course of methotrextate. I was devastated. My wonderful friend Lis raced to the hospital and so was there with me when Dr Savage delivered the news that my levels had indeed increased and I would be admitted the next day. Although at first I took the news quite calmly (probably in shock), I then started shaking and got very upset (as did Marty when I rang to tell him). The horrid thing is in a very strange way you feel like you are letting people down in that you were not able to fight this thing - just one of the many irrational thoughts you have over the next few weeks and months.
I had to go home and make various calls to my boss, my family and friends. I was admitted to CXH the next day (mid July 2005) to start my first course of methotrexate. I remember the feeling of it all being somewhat surreal, on the first morning I woke at 5am and lay in bed thinking, I came to London for a carefree OE and here I am in hospital starting a form of chemo treatment for a tumour in my womb - this isn't how it's meant to be. It was so hard being so far from my family but I had the most amazing support from Marty and my friends and work colleagues in London. Whilst I was in hospital my father and my dear friend Lou also made plans to come over to stay with me.
At first all I could think about was not wanting to do anything to reduce my chances of conceiving - to me this seemed so much more important than my own health. But once the hospital started the tests to rate the tumour (the lung x-ray etc) I remember feeling so scared for myself and for a while the worry about being able to bear children was put to the back of my mind. Up until this stage, every time we had received news it had been bad and it was hard to accept that things would get better.
The treatment and staff at CXH were truly amazing. That Dr Savage and the nurses had the time to sit and talk to you (even if they were giving you the same reassurance over and over again) and answer all the questions you had was invaluable. I felt so pleased that I was in London and thus able to be treated at CXH and so confident in the treatment I was getting.
The other amazing part of my time at CXH was that Dr Savage and his team introduced me to another woman who was admitted the same day as me. It was amazing to have her to talk to and to feel like you weren't the only one going through this. We have since formed what I am sure will be a life long friendship. We both spent a long time pouring through the album they have at CXH of woman who have had treatment and gone on to have children. This is such a valuable tool to give you hope although you still at this stage find it hard to believe it will finally happen for you.
The treatment itself was probably not as bad as I had expected. I felt tired and had trouble with my eyes (stinging especially in sunlight) and did get mouth ulcers but on the whole it wasn't nearly as bad as I had expected.
I continued the methotrexate treatment for four months (having several rounds after my hCG returned to normal at the beginning of September 2005). I didn't work during this time and CXH arranged for me to have private nurses come to my home to administer my injections (funded by my private health insurance).
During this time I was fairly emotional (and very tired) but just tried to take one day or one round of treatment at a time. One of the hardest things to cope with was that we had to then wait another year until we could try again (ie until mid Oct 2006). Being in my mid thirties with all our friends well into having their families I found this particularly hard to cope with.
I found it strange returning to work. As soon as I had been back it was like I had never left but at the same time this huge thing had happened to me which I didn't want to ignore. I also longed to be at home in NZ closer to my family. We therefore made the decision to return to NZ.
The year from when I finished my treatment until we could start trying to conceive again dragged by, but making this decision to move back to NZ, going on a trip through Europe and then the moving back to NZ and starting a new job back here broke the year up.
I still struggled though, perhaps more so as the year went on with the frustration of not being able to try again, the worry that I would never had a child and the anger and bitterness I felt (and felt guilty at having) at everyone else conceiving. By now there were friends whom I was pregnant with back in 2004 who were having their second child.
My hCG level stayed at normal through the whole year post treatment (other than one hiccup in October 2006 when it seems I probably had a very early miscarriage). It took several months for us to get pregnant once we started trying, however, in January of 2007 I discovered I was pregnant. Rather than being thrilled I felt shocked and scared. It was such a scary (and long) few weeks until I was around 5 1/2 weeks and they could detect a heart beat. I will never forget that moment - Marty and I both burst into tears - shear relief! Then of course there was the worry in the first 12 weeks of miscarrying. However, having got through that stage my confidence has slowly grown. It now September 2007 and I now have a baby boy, born a few weeks early but healthy and weighing in at just under 6 pounds.
I wanted to share my story to give others hope that despite everything and all you go through it can turn out alright.
Caroline