Guest post: Molar pregnancy: "we had a 2% chance of success"

[MumsnetGuestPosts]

Until two years ago, my awareness of the term 'molar pregnancy' was limited to my medical text books; a rare case study that was never actually seen, but had to be learned on the off-chance a tricky question might come up in medical exams.

That all changed abruptly in the early stages of my second pregnancy, at what I thought was a routine scan for morning sickness.

I’d been sick every day of the first 32 weeks of my first pregnancy, so when I started vomiting this time, I initially wrote it off as hyperemesis - I just accepted that I was a morning sickness person.

Being a doctor myself, I was probably guilty of self-diagnosing. With the demands of work, our daughter Maya and life in general, I just wanted to get on with it until it passed. When the sickness turned to listlessness and I couldn’t keep any food down or even get off the couch, it was time to get to the hospital for a second opinion.

After a scan, our consultant confirmed I had a suspected partial molar. We were totally crushed.

In layman’s terms, a molar pregnancy - a form of Gestational Trophoblastic Disease - is the result of a sperm implanting itself in the lining of the womb, rather than an egg. It then multiplies to create a potentially cancerous tumour instead of a foetus. Cruelly, it mimics the signs and symptoms of a pregnancy, even delivering a positive pregnancy test result.

Molar pregnancies only occur around 1000 times a year in the UK. A partial molar - of which there are around 100 per year - comes from one sperm fusing with an egg to form a foetus, with a second fusing with the lining of the womb, creating a potentially cancerous tumour that can kill the foetus and spread cancer to the mother.

The consultant advised that it would be wise to prepare for the worst. In his mind, it was a simple equation; we carry on whilst there’s hope, but if at any point my health was at risk, we would have to terminate the pregnancy.

The next few weeks were a blur. We were constantly on edge, contemplating the worst while trying to convince ourselves that all would be well, and also trying to attend to Maya’s needs. On top of it all, I was still being admitted every two or three days with dehydration from sickness.

And it kept coming. I was admitted to a hospital in Manchester, where I was incorrectly told I didn’t have a molar and all was well. I suffered kidney stones and, at 20 weeks, there was a Down’s Syndrome scare and two-week wait before hearing that that too was inaccurate.

The constant physical and mental exhaustion took its toll. In our darkest moments we’d ask whether it was worth carrying on, for the unbearable stress, risk and anguish we were enduring. The guilt that came from even contemplating such thoughts only added to the suffering.

Our friends and family will never know how important a role they played during this time. From a very early stage, we made a conscious decision to share our situation with people. We took the view that there was nothing to hide or be ashamed of. More practically, we needed the support.

As soon as we did, we were amazed by how many people, some of whom we’d known for years, came forward with their own stories of struggle and loss. Aside from giving us comfort, we felt it helped them, providing an outlet for their own grief.

When Eden was born 18 weeks later - amazingly - she and I were both given the all-clear, despite only having a 2% chance of escaping unscathed.

We know how lucky we are, and that the ending to our story is different to the overwhelming majority of people who face heartbreak on the back of this awful cancer. That's why we feel a responsibility to shine a light on Gestational Trophoblastic Disease, support those unfortunate enough to be living through it and help make their lives a bit easier.

On Sunday, my husband Stephen and I will set out on a 79 mile, 72 hour walk around London’s Capital Ring. Donations will support the work of Professor Michael Seckl of the Cancer Treatment and Research Trust. He is working on a test that will give mothers suffering the effects of GTD clarity on whether they require chemotherapy and other treatments far more quickly than is currently available.

We’re walking to raise awareness and funds. But we’re also walking to take the time to process what we went through. Setting out on a 79 mile hike to spend some time together may sound a bit extreme, but we’re now ready to put this awful episode behind us, come home to our beautiful daughters and get on with our lives.

You can donate to Rochelle and Stephen’s JustGiving page here and follow the progress of their walk at #CircleTheCity from Sunday until Tuesday night.

[riskaverse]

The account you give is quite remarkable.
I am delighted both you and Eden are doing so well and I wish you all the best on your fund raising in Support of Professor Anthony Seckl's work. You might suggest to him that he updates his own website www.hmole-chorio.org.uk/faqs.html of the Charing Cross Hospital Trophoblast Disease Service, because he states that
"As the partial mole has the male and female chromosomes a foetus can briefly develop, but due to the imbalance between the male and female chromosomes the development is highly abnormal and the foetus can never develop into a baby"

[PlainHunting]

Professor Michael Seckl?

[squizita]

I was also treated at Charing Cross for the condition riskaverse describes and it was referred to throughout as "partial molar" - basically i had a miscarriage or so i thought till my hcg rose and i bled more. The molar pregnancy charity also gave me this impression - that this condition meant 100% of the time, loss.

I had NO idea that even 2% of these could actually carry and it's WONDERFUL to hear your story.

Thankfully (though after further losses due to APS) I had a healthy baby girl last year.

[hazeyjane]

I was under Professor Seckl's care in 2003, when I suffered a persistant molar pregnancy. In my case I was diagnosed with a molar pregnancy after we had started fertility treatment. Following 2 erpcs, I was admitted to Charing X after a middle of the night dash from our local hospital in Somerset, after haemorrhaging and collapsing at work.

Chest xrays, brain scans and lumbar punctures were performed, and scans and bloods showed that the tiny pieces of tissue remaining from the trophoblastic tumour after the erpcs, had become cancerous. I stayed in Charing X for 6 weeks whilst chemotherapy was established. For most of my stay in hospital I had to remain lying down as the bleeding was so heavy.

For the next 7 months I had 3 blood tests a week, 3 urine samples a week, a 7 days on 7 days off programme of intra muscular methotrexate injections (3 in the 7 days) done by a district nurse. All the while phoning the amazing support line at Charing X to listen to my HCG levels creeping down (they had started in the 500,000s and had to get down to 4!)

After 7 months and when my levels had reached 9, they plateaued and started creeping up. It was an awful time, and we had to go back to Charing X, to have a different regime of chemo established, this time a stronger and more debilitating regime involving actinomycin D via drip, daily for 5 days, then 5 days off. Fortunately we were able to stay with lovely friends in London whilst this was sorted, and then have the treatment back in Somerset.

Finally after another 2 months of treatment, my levels went down to 4 and stayed there.

Dh and I were unable to ttc for another year, due to chemical imbalances caused by the chemo, and utter terror on my part of anything like this ever happening again!

In 2005 we decided to ttc again and were very lucky to have dd1, dd2 arrived just over a year later, and ds 3 years later. We are extremely lucky.

I am on lifetime follow up with charing X, with biannual urine and blood samples, as I am at an increased risk of further cancers, and for research purposes.

Thankyou for your post.

[squizita]

Oh and Prof Seckl is Michael on all my stuff too. Pretty sure there's only one!

[hazeyjane]

Whilst at Charing X I was with a woman, who had also had a live and healthy birth, despite a persistant molar pregnancy, which had also become cancerous and required chemotherapy.

[chewbecca47]

Your story, told so frankly and with great courage, is an inspiration to all mothers, especially those who have encountered health challenges during pregnancy. So happy that you, Eden and family are well, :)

[riskaverse]

If they have a twin pregnancy, with one normal pregnancy and a co-existing molar pregnancy there is a 60% survival of the normal twin if they continue with the pregnancy.
And indeed that makes far more sense than what Rochelle Rosenthal is describing, given that Partial Moles are genetically abnormal and she has a normal baby, and given that Manchester said it wasn't a partial mole.
However this is not what Rochelle is reporting.