Woman diagnosed with incurable cancer age 15 is still alive 20 years later

Rachel Gilbert, 35, lives in Cambridgeshire with her partner Richard, 33. Here she shares her powerful story of making the most of life when you think you only have months to live.

Until the age of 14, I was a super-fit child who would spend hours every night training to be a gymnast. I absolutely loved it and there was no hint that anything was wrong until suddenly I started becoming more out of breath and felt a little dizzy.

At first, I thought it was because I’d had a recent injury and was less fit. But I started experiencing stomach pains and my mum said I looked really pale. I’d noticed that my poo was black too – the sign of internal bleeding, although I didn’t know that at the time – and so we decided to book an appointment at the GP.

The doctor agreed I was pale and my pulse was high so he did a blood test. A few days later, I answered the phone and it was the surgery asking if they could speak to my mum. She wasn’t there and the receptionist said that when she came home, we should head to hospital. That’s when panic set in.

Mum came home and at the hospital I was told my haemoglobin levels were very low. But they said it could be down to heavy periods and gave me two blood transfusions and some iron tablets and that put my mind at rest, although both my parents were worried sick.

Is it cancer?

I was sent home from hospital but had my bloods retested a few days later and the haemoglobin levels had fallen again so they gave me an endoscopy (a camera down the throat) while under anaesthetic. It was when I woke up that I knew something was seriously wrong. Mum was with me and I could see she was really upset. ‘Is it cancer?’ I asked and she simply said: ‘We don’t know, we have to wait and see’.

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It was after more blood tests and a surgical biopsy that we finally had some answers. Two days before Christmas the news was broken to us that I had gastrointenstinal stromal tumours – cancer in the digestive tract – and there was no cure.

This form of sarcoma is incredibly rare, accounting for only 1% of all cancer diagnoses – and it’s even more rare in young people. Mum started crying but if I’m honest, a lot of the medical talk went over my head. It was only when we got back to the car and I said: ‘So have I got cancer?’ and Dad said: ‘Yes’ that I began crying too.

Never see another Christmas

At home, mum explained that it had spread and there was no cure at the moment and that’s when I became very frightened. I remember laying in bed thinking, 'I’m never going to see another Christmas.'

But there was a glimmer of hope. A new trial drug had come out and although I was too young for it, the doctors applied for it on compassionate grounds because without it, I’d die. It was called Imatinib and I started taking it a month after diagnosis. They hoped it would shrink the tumours or at least keep them stable – which it did.

Being diagnosed with incurable cancer when you’re only 15 was was really hard and nights were the worst. I was terrified I’d never wake up. On treatment, I had a lot of vomiting and was really weak. I couldn’t believe I’d gone from super-fit gymnast to terminal patient in just six months.

Living life to the full

I met a friend, Stuart, while in hospital who also had terminal cancer. He had such joy in his life and really taught me to grasp each moment of life, because none of us knew how long we had. The doctors could never give me a timeline. It was always ‘maybe a couple of years’.

When Stuart died in 2003 aged just 15, I knew I had to live my life as fully as possible. Now, I have my own home and a partner and make greetings cards and do flower photography. Although I can’t work full-time, I do as much as I can to keep busy.

Read more: Britain's longest surviving bowel cancer patient

Incredibly, 20 years later I’m still here and that’s partly down to luck and partly down to science and the new trial drugs. The first drug held my tumours stable for two or three years, then another drug came along and then another. I’ve had 90% of my stomach removed but the tumours are inoperable, there are simply too many of them. I have to rely on the medication.

There’s no history of cancer in my family but in 2017 I had genetic testing done via Genomics England and my test indicated that it could be hereditary so now my family are all eligible for screening on the NHS. It also showed that I’m at higher risk of developing other cancers and am screened annually.

Raising awareness on TikTok

It was during lockdown, while I was shielding, that I became so bored and lonely that I turned to TikTok and started making videos about my cancer to raise awareness. I had always felt bad that I had never ‘given anything back’ so this was my way of doing that.

I try to post every day, even on my bad days and the response I’ve had has been amazing. I want to be able to raise awareness of the symptoms and people have already contacted me to say they’ve been checked out at the GP as a result of my videos.

Read more: Mum becomes TikTok star to normalise Crohn's

Today, I have no idea how long I’ve got left. My tumours have started growing again and I’m waiting for another trial. But it’s not going to hold me back. I’ve learned that it’s ok to have bad days but not get stuck in them and dwell. I’m very proud that I’m still here and still living life to the full.

To follow Rachel's journey on TikTok @thatgistcancergirl

For more information see sarcoma.org.uk