'I desperately wanted to focus on just being a mum and not a cancer patient.'
When Ella experienced light bleeding 16 weeks into her pregnancy she never expected it would reveal a rare tumour. She was young and had never heard of anyone pregnant with cancer.
This is her story...
16 weeks into my second pregnancy I had some light bleeding. I mentioned it to my midwife who reassured me that it was likely nothing to worry about as a small amount of bleeding can be normal during pregnancy. So I went away, feeling relieved and happy that everything was ok.
Then, at about 18 weeks, I woke up one morning to heavy bleeding. I had no pain or discomfort, and I could still feel the little flutters of my baby moving in my tummy. Whilst this was reassuring, the bleeding was alarming, so my mum came round to look after our 2-year-old son, while my husband and I went straight over to the hospital.
I was examined by a midwife who said that my baby was fine which was such a relief. Then I had an internal examination, and the midwife said she could see something on my cervix, but wasn’t sure what it was. A senior midwife came to look, who reassured me it was likely a polyp which had been aggravated by my pregnancy and was causing the bleeding.
She called in an obstetrician who also examined me and agreed that it looked like a polyp, but asked me to visit the Gynaecology department for a camera examination to look at the lump more closely. A few hours later, the Gynaecology consultant agreed it was a polyp. She said it was very unlikely to be cancerous because I’d had a clear smear test 18 months prior, and because I was young and pregnant.
That word ‘cancerous’ took me completely by surprise. It hadn’t even entered my head that it could be that, particularly as I was pregnant. I’d never heard of anyone being pregnant with cancer.
The consultant was reluctant to do a biopsy, as there was a risk of miscarriage, so she decided to monitor the lump and examine me again in two weeks. We spent Christmas feeling uneasy and anxiously waiting for my next appointment. I had my 20-week scan and found out we were having a baby girl, which we were really excited about.
A week and a half later, I had my follow-on appointment, and found that the lump had grown a considerable amount and would need to be biopsied. The consultant explained the risks, which were a huge worry, but she also felt the risks were outweighed by the need to do the biopsy. Thankfully, the procedure went fine, and I went home the same evening.
Two days later, I received a letter through the post to attend a further appointment in two days’ time. I began to panic because of how quickly the results came back and the obvious urgency to see me, but I still didn’t think it would be cancer and must be something else.
When I arrived there were four other people in the room with my consultant: an obstetrician, an oncologist, a Clinical Nurse Specialist, and a midwife. They got straight to the point. The lump was a very rare and very aggressive tumour called a small cell neuroendocrine tumour. My consultant explained how quickly this tumour can grow and divide.
I remember saying “I have a son, I can’t die”.
I kept saying it over and over again, desperately hoping someone in the room was going to reassure me: “You’re not going to die.” but they didn’t, because they couldn’t.
They were very honest with me and told me they hadn’t dealt with a case like mine before, so they had to do their own research. They explained that a treatment plan had been put together by a Multi-Disciplinary Team. I would need to have a hysterectomy, chemotherapy, radiotherapy, and brachytherapy (internal radiotherapy).
I was then given two options: to terminate my pregnancy and begin intensive treatment straight away, or continue with the pregnancy and begin chemotherapy using milder drugs that were safe to receive in pregnancy. This would hopefully keep the tumour stable and prevent it from growing, with the aim to perform a caesarean/hysterectomy when I reached 35 weeks.
My consultant said that I should consider a termination or my husband "could be left to raise two children on his own, rather just one.” But my husband and I both knew that a termination wasn’t an option for us. If I hadn't been pregnant, the tumour wouldn’t have been found so early and my prognosis would’ve been much worse.
My baby had given me a chance and I owed it to her to give her a chance too.
I began chemotherapy the following day, delivered on a 3-weekly cycle. I lost my hair quite quickly and as hard as it was to look in the mirror, I knew I just needed to do everything possible to stay alive for my family; this was all I was focusing on. After my second cycle, I developed a reaction to one of the chemotherapy drugs and became quite poorly so I had to continue with just the one.
Unfortunately, during a routine examination, my oncologist noticed that the tumour had more than doubled in size, meaning the chemotherapy was no longer working. Three days later, at 32 weeks pregnant, I went in for surgery. The caesarean was performed under local anaesthetic which meant I was awake for my baby’s birth which was amazing. Grace was born, tiny but perfect, and we got to enjoy cuddles with her for ten minutes before she was wheeled off to the Neonatal Intensive Care Unit and I had the six-hour procedure of a total hysterectomy.
My surgery went well. I recovered in hospital for a week and spent each day in the NICU with Grace.
In between scans, I desperately wanted to focus on just being a mum and not a cancer patient.
Even though I was going through one of the worst times of my life, it was also the best because of Grace’s arrival. She did amazingly well and came home after two and a half weeks.
I had three days at home with my family before starting the intensive treatment. Unfortunately, it hit me hard, and I was really poorly. I was being sick all the time and could barely stand. I lost a stone and a half in just a few weeks. I couldn’t spend any time with my children; I couldn’t play with my son, and I couldn’t cuddle Grace because I was too poorly. My husband did it all which was so hard to watch. I felt like I was missing out on so much and it was heart-breaking that I couldn’t do the things I felt a mum should be able to do for her children, particularly for Grace.
I wasn’t aware of Mummy’s Star during my diagnosis and treatment, as it was only founded the year. I came across it 5 years later and knew straight away what a huge support it would have been for me. I would have hugely benefitted from knowing I wasn’t alone. One of the hardest things for me was feeling so alone and isolated. Although I had a wonderful support network of family around me, it really felt like I was the only person going through something like this.
When I went into the cancer centre for treatment, I was always the youngest person in the waiting room. I could feel people’s eyes on me and my baby bump.
I felt so alone, and I was desperate to connect with people who were in a similar situation to me.
It has now been nearly 9 years since my treatment ended and I am grateful to say that I currently have no evidence of disease. More importantly, Grace is a very healthy and happy 9-year-old. I have many long-term effects from my diagnosis and treatment, but I’m so thankful I survived. My children have their mum, my husband has his wife, and my Mum and Dad have their daughter, which I will be eternally grateful for.
Ella x
