I was told I had Gestational Trophoblastic Disease

Gabriella, 28, lives in Hertfordshire with her husband and supports victims of domestic abuse. She fell pregnant last year and initially thought she’d had a miscarriage. She later found out it had been a molar pregnancy and she would need specialist care, including chemotherapy for Gestational Trophoblastic Disease. This is Gabriella’s story.
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We started trying for a baby last summer and fell pregnant straight away

My husband and I got married in April 2021, after having to reschedule due to COVID-19. We started trying for a baby around August time and I fell pregnant straight away, to my surprise.

We were beyond ecstatic to find out we were pregnant on our honeymoon in Barbados in September and spent the honeymoon discussing baby names, looking at prams, cots, imagining ourselves as parents. It was the most amazing time.

We came home from our honeymoon at the end of September and shared we were expecting with our nearest and dearest which was also amazing. It was something we had been looking forward to for years, giving our parents the opportunity to be grandparents – the greatest gift.

I had some bleeding soon after we got home

After a few weeks of being home, I started to bleed a bit and I thought this was implantation bleeding. I visited the early pregnancy unit (EPU) on 15 October and was told a gestational sac could be seen, but no fetal pole, and to come back in 10 days.

Those 10 days were the longest, most anxious days of our lives. I knew, I just knew, I was miscarrying. This was confirmed on 25 October. On 28 October I had a D&C to remove the pregnancy. I recovered well from the procedure and went home on the same day.

I had to go back to hospital that evening

However, that evening I began spiking a temperature. I went to A&E and was admitted, given fluids and antibiotics to kill off any infection as a result of the D&C. I went back to the early pregnancy unit on 31 October for another scan to whether there was any tissue left inside – it was confirmed there wasn't.

We felt ready to try again a little while after

A few weeks passed and I felt better, we agreed it was time to try again after this heart-breaking ordeal.

I was doing pregnancy tests every few days to know when to expect my period and subsequent ovulation.

I was doing this with the expectation of the test being negative, as I was no longer pregnant – but weeks and weeks passed and my tests were still coming back positive, so I eventually called back the early pregnancy unit for advice at the end of November. They asked me to come in the following day.

Things were more complicated than I thought

I had scans done and they could see a 2cm mass seen in the lining of my uterus. A fibroid was ruled out. A few nurses and sonographers came into the room to give their opinion whilst I was being scanned, and I was told I mostly likely had an ectopic pregnancy, which I disagreed with. It was believed this was a missed pregnancy from the first time I was pregnant. I had a blood test and was told my hCG level was extremely high at 22,800 – but this meant nothing, to me as I had never had my hCG tested before.

I was referred to another hospital and had an appointment booked for the following day.

I went home and was absolutely devastated, feeling as though I had miscarried all over again. I thought about how I could have been carrying twins, and how I might need another operation – keyhole surgery – due to where the pregnancy was.

My husband was at away at time in LA visiting a friend, so I was facing this all alone.

The consultant at the second hospital thought it was a molar pregnancy

The following day I went to my appointment. The consultant who scanned me disagreed with the other doctor and told me she thought I had a molar pregnancy, even though this wasn’t picked up during the D&C. I had dreaded this and was terrified – I had come across molar pregnancy on Google. I asked her if this could be Gestational Trophoblastic Disease (GTD) and she told me this was what she wanted to rule out. I was absolutely petrified. I had my hCG taken, which was 22,600.

The consultant wanted to keep an eye on my hCG, so I was booked an appointment for the following day at my local hospital for another blood test. This time, my hCG was over 48,000.

I was referred to a specialist team

I was told I would be referred to Charing Cross Hospital, where there’s a specialist team who deal with gestational trophoblastic diseases. Days passed and I’d had no news about my referral. The anxiety was making me sick, so I called Charing Cross Hospital on the morning of 7 December and explained the situation – that I wanted to be seen as I had suspected GTD.

After several hours of waiting for a referral to be submitted, I was invited into Charing Cross Hospital for blood tests, ultrasounds, an MRI scan on my brain and a CT chest scan. I was told to bring a bag of toiletries and clothes that I would need for one week as I was being admitted.

I had to spend the night on a cancer ward

I still had no confirmation of any disease or illness. All I knew I was staying in a hospital in London on a cancer ward. 

After a lot of waiting around I had received my hCG results which were now at over 68,000. The mass in my uterus was now a 4cm tumour – but, thankfully, there was no metastasis to my lungs or brain.

I was told a bed was available for me on the ward, and I went up with my husband. We met with one of the consultants who told me I would be started chemotherapy in the form of methotrexate that evening. My husband had to leave, and I would stay on the ward waiting for chemo. I don't really remember much after that that day.

The consultant confirmed I had GTD

The following day, I met with my consultant Prof Seckl who confirmed a definitive diagnosis of persistent gestational trophoblastic disease. He also confirmed that I’d had a complete molar pregnancy. which had been missed up until now.

It was a long, long week. My family and friends were at home carrying on with their lives and I was on a cancer ward all by myself – having chemo, feeling rubbish, terrified of what was happening and going to happen.

My husband visited me every day. We would go for a coffee in the hospital and sit and talk, and sometimes cry.

I was so relieved to come home

My hospital stay was uneventful, which was good, but things have been really tough since I came home. I can’t be around others due to being immunosuppressed and the fear of catching COVID-19. I’m not allowed to walk or stand for too long; I can no longer do normal things like hoovering, cleaning, mopping, have a hot bath, see my family and friends, go to work, even do a food shop. I have also spent the last couple of months going between multiple hospitals. 

I just want to get back to normal. I am longing to go running again, go into work, hug my niece and nephew, have a glass of wine and a meal out with my husband – normal things we all take for granted.

My life now revolves around 3x weekly blood tests and travelling to hospital for chemo 4 times a week, every other week. I feel like I’m constantly sitting around waiting and analysing numbers, avoiding COVID-19 like the plague.

More people should know about molar pregnancy and GTD

The reality is that a pregnancy test saved my life. I am in the tiny minority of people having this type of cancer, and in an even tinier minority in the sense that this was not picked up by any medical professional. My situation is rare – one in hundreds of thousands – but this doesn’t make me feel better.

I believe I now have a duty to raise awareness. I feel so passionately that more should be known about molar pregnancy and gestational trophoblastic disease, both among health professionals and more widely. More support is needed so we don't feel so alone through such a scary time.

I am nowhere out of the woods yet, and I don't know when I will be. I feel lucky my cancer is so curable but that doesn't stop me being terrified and anxious. 

The further you fall the higher you bounce, so they say.

To help support research into Gestational Trophoblastic Disease, Gabriella has set up a fundraiser for The Cancer Treatment and Research Trust CIO at Charing Cross Hospital. You can also reach out to Gabriella via her Instagram.