The dangers of delayed diagnosis: why doctors are the first battle in the war against cancer

In this first of a highly personal series, our writer describes her brush with cancer and struggle to get a GP to recognise her symptoms. Below: what you can do

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  • 25% Of young people visit a GP 4 times before being referred

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***

I remember the deep, precise cut across my leg, leering at me like a malevolent smile. The plastic surgeon, trying to be jocular, observed, "you're very slim, there's hardly any fat on your legs at all!" I nodded, staring into the widening gash at the tiny fat globules. Yes, it really was mostly just skin and bone — I could see the skin, and the bone.

"I prefer to store all my fat on my belly!" I attempted a (mildly hysterical) joke. Unsurprisingly, because of the combined lameness of the joke and the context — I was on an operating table – no one laughed. The local anaesthetic made my whole leg numb, as the surgeon zapped veins, scraped bone and sliced into flesh. I wasn't really up to creating a witty rapport. I felt numb, too.

Two weeks before, I learnt that melanoma was silently turning my own cells against me, and since then, I couldn't wait to get on to that operating table and rip out the mutinous skin. I watched as a 5cm square of squishy flesh, formerly mine, was unceremoniously dumped into a bin with a damp slap. And then the needle went in, expertly stitching the gap, turning the garish grin into a neat, bloodied line. I didn't feel anything for a few days, but when I did, what I mostly felt was relief that finally someone had taken me seriously enough to cut bits out of my body. If I had listened to my doctor in the first instance, no-one would have kindly cut my leg open, and by the time they did, it might have been too late.

When people mention cancer, you think about chemotherapy, hair loss, vomiting, weight gain and weight loss, fatigue, misery and the terrifying prospect that after all that, you still might not survive. I didn't have to go through any of that. The operation, luckily, was the end of the ordeal for me. I caught the melanoma early, so all it took was a swift operation to remove the skin. All that remains of the episode is a faint scar on my thigh, and now I am just as healthy as anyone who has never even had cancer. Once I was diagnosed it was all comparatively easy, but my battle was to get someone to acknowledge that anything was wrong in the first place.

A mountain out of a mole hell

Like many young people diagnosed with cancer, it began with a mole. It was itchy, then painful, then it formed a scab, and then it just fell off. I thought that was a bit odd, so I told my mum, who ordered me to go straight to the doctor's. Clever Mum. She knew what the GP refused to accept, that a mole that turns into something that isn't a mole is a very big warning sign, no matter if you're in a supposedly "low-risk" group. I was 25, supposedly too old for leukaemia, too young for skin cancer. I'd just started a very hard but brilliant journalism course and I was loving every minute of my first term. I was a probably a picture of health and happiness, and that was the problem.

"You look fine," my doctor said, and asked me if I wanted my mole removed for "cosmetic" reasons. "Not really." I explained I wanted it removed because I had heard that a dodgy mole was something you should have removed. "Well, you look well." The doctor repeated, paying more attention to my face than my leg. I went home, relieved that he seemed totally unperturbed. I was obviously just being paranoid.

"He did what?!"

My mum was most unimpressed with GP's blasé dismissal. She sent me back to properly discuss the mole, which by now had mutated into something that resembled the original mole, except that, weirdly, it was totally devoid of pigmentation. "But he says it's fine," I replied, looking dubiously at the pale, moley lump. I was really too busy to keep making doctor's appointments, but, mainly to appease my mother, I went back.

This time the doctor ran through a checklist. I had no history of cancer in my family, I had never been badly sunburnt, I do not have fair skin. I am a very moley person but my moles are perfectly healthy. I was sent home. My mum, bless her, made me return again, and demand a referral.

I got sent to another doctor whose practice was just up the road from my doctor. I had to make the appointment in person, then had to wait two weeks to be seen. Time was ticking on. By this point I was feeling incredibly frustrated, my mole was now a pimple, it bore no resemblance to its former moley self – even I was worried it might be something serious. "It's a pimple," the new doctor said. "It just looks like a normal pimple." I explained that now it looked like a normal pimple, but just seven weeks before it had looked just like a normal mole. He repeated the dreaded phrase, "You look fine. Is it for cosmetic reasons you want it removed? Does it bother you because you wear a lot of short skirts?"

Remember being ID'd when you were underage and trying to get into clubs? Remember the embarrassment when you were turned away, because they'd seen your face and you were nervous, overly made-up, and obviously too young? Remember feeling like a bit of a fraud and wishing you were just a bit older, more confident? That's how I felt. People in authority kept telling me I was just a silly little girl who was preoccupied with her looks. I had spent six weeks just trying to get someone to take a tiny patch of skin off my leg and test it, but the door seemed barred. "I can freeze it, if you're bothered about the look of it. If you want to go away and think about that, it will take at least another two weeks before you can make another appointment."

Desperate, I agreed to the cryo treatment. I wasn't sure what it would do, but anything would be better than having to wait any longer. He took the gun, froze off what I now thought of as the  "pimplemole" and told me to make another appointment in reception. I crept home and finished up my assignments for the week, tired, but pleased that something had been done.

"You do realise that if it's cancer, freezing it won't do anything?" said my mum the next day. No, I hadn't realised that. By now, I knew the drill, and as soon as I had a gap in my schedule, I went back to my doctor's surgery. I spoke to the practice manager who told me to go away. I didn't. I couldn't. Suddenly I was very angry. I wasn't an idiot, I wasn't paranoid. I certainly wasn't boomeranging back to the doctor's for fun... all I wanted was a tiny slip of paper. Why wouldn't anyone give it to me?

I tried to explain to the practice manager that the doctor had already seen me and sent me away several times, that I wasn't a hypochondriac. She raised her voice, ordering me to leave. At that moment, my anger vanished and I didn't have any energy left. I don't remember exactly what happened after that point, but I think I cried. I definitely refused to go away. Some time passed. I ended up with a reluctantly-given referral letter in my hand. After that, everything was very simple. I went to a hospital where they tested me straight away. It was hard to tell for certain what was wrong because of the trauma the cells had undergone from being frozen, so the doctors sent a larger sample away to a specialist who confirmed it was a melanoma. Within two weeks after getting the letter, just a few days before my 26th birthday, it was all over. I was normal again.

What you can do

I'm not the only person who had problems getting a doctor to pay attention to me. According to the Teenage Cancer Trust, as many as a quarter of cancer sufferers aged 13 to 24 have to visit their GP four times or more before their symptoms are taken seriously and they are referred to a specialist. I was lucky, but delays such as the ones I experienced can have a serious negative effect on the outcome of the treatment young people receive.

As part of Teenage Cancer Awareness Week (1-7 October) Independent Voices is running a five-part series to raise awareness of cancer in young people. We are supporting a project that will send a team of healthcare professionals into schools and universities to teach teenagers and young adults to recognise the key signs of cancer in young people. The Teenage Cancer Trust's  Education Team will advise young people to speak up if they notice one of these changes, and give them confidence in their knowledge of their own body, so that if a GP dismisses the problem, they won't just accept it.

You can recommend that the Teenage Cancer Trust's Education team comes to your or your child's school, college or university for free here.

Tomorrow: four more personal stories from young people on the frontline of the battle against cancer

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