'Trust your instinct': Woman who battled three brain tumours urges others to get symptoms checked

A woman who has battled three brain tumours, leaving her having to relearn everyday tasks like getting dressed, has urged others to trust their instincts and go see their doctor if they think something is wrong with their health.

Natalie Lewis was diagnosed with brain cancer in 2016 after experiencing bad migraines and headaches that left her taking painkillers every day.

Since then, Natalie has undergone surgery, a round of chemotherapy and a round of radiotherapy to treat three tumours.

The 40 year old from Llandudno has spoken about her experience on Less Survivable Cancers Awareness Day, in order to raise awareness of the symptoms of brain cancer and ensure early diagnosis.

Natalie has been riding horses since she was six but had to relearn how to get on the animal, after surgery to remove the first tumour.

Six years ago, Natalie found herself taking painkillers on a daily basis just so she could "get up and function". In June 2016 she was advised to limit her intake of the medication.

Natalie stopped taking the pills altogether and around two weeks later she was found unconscious at home after having a seizure. She ended up in hospital for six weeks undergoing tests and scans which eventually revealed a brain tumour.

Natalie underwent surgery to remove the tumour, which she said went well.

"Three days later, I was home and since then my recovery has been good," she explained.

"I've had to learn how to do a few things... I'd forgotten how to get on the horse and I've been riding since I was six years old. Getting dressed, I'd forgotten how to put my clothes on in the right order.

"It was a real task in the morning to think about what you were doing and then with the recovery came the anxiety because I was very, very conscious I wasn't doing things properly.

"I didn't want to go out on my own but I had to go back to work, there's still bills that need paying."

Natalie said Tenovus Cancer Care were integral in helping her in her recovery.

In December 2019, two more shadows were found on Natalie's brain, leading to radiotherapy and chemotherapy.

She said: "That was the worst bit for me, the radiotherapy...I did lose my hair and that was quite upsetting.

"I made the decision to get my friends to use the horse clippers and take the whole lot off because I'd rather walk around and wear it with pride. I've got nothing to hide and I'm a firm believer that your hair isn't you, you're yourself, you are your personality.

"So if me wearing my bald head meant that people asked me questions, I was quite happy to tell them my story and where I was at because it's all about awareness"

The radiotherapy left Natalie exhausted and caused her hair to start to fall out.

Natalie's condition is now considered "stable" but she said doctors say the prognosis for survival is five to seven years from diagnosis. She has already hit the five year mark and said she lives "every day as if there's nothing wrong".

"If you sit and dwell on it, you're just going to eat yourself up," she said.

"You've just got to get on with it. It could come back, could be five years could be 10 years, could be on my next scan in June, you just don't know. You've just got to carry on."

Now the horse enthusiast is using her story to try and help others.

She added: "I just think the more people talk about it the more someone might say, 'Well actually yeah, I've had these headaches for six months and they're probably not quite right'.

"But then I think people need to be less afraid of approaching their GP and insisting they've got a problem, because you know your own body. You've got to get it checked out, trust your own instinct.

"There's no point kicking it under the carpet, get investigated, find out what's going on."

Tenovus Cancer Care says early diagnosis is vital in tackling the six most deadly cancers. They include lung, liver, brain, oesophageal, pancreatic and stomach, with an average five-year survival rate of just 16%.

The charity says around 4,500 people in Wales will be diagnosed with the diseases.

They account for more than four out of 10 deaths and are far more likely to be diagnosed in emergency settings, through admission to hospital or via an emergency GP referral after symptoms have become severe.

A quarter of cancers in the UK have an average five year-survival rate of around 16%. These are known as less survivable cancers and are said to be difficult to diagnose because screening programmes are limited and the public are said to be unaware of common symptoms.

Red flag symptoms for less survivable cancers:

  • Brain: sight and speech problems, headaches, nausea, vomiting, seizures, mental or behavioural changes.

  • Liver: Unexpected weight loss, loss of appetite, feeling and being sick, pain or swelling in your abdomen, jaundice, itchy skin, tiredness, fever, vomiting blood, dark urine.

  • Lung: A persistent cough, coughing up blood, chest pain, unexpected weight loss, loss of appetite, shortness of breath, feeling tired or weak.

  • Oesophageal: difficulty swallowing, indigestion or heartburn, loss of appetite, vomiting, stomach, chest or back pain, a persistent cough, hoarseness, tiredness and shortness of breath.

  • Pancreatic: Pain in the back or stomach, loss of appetite, unexpected weight loss, yellowing of the skin and whites of the eyes (jaundice), indigestion, changes in bowel habits. 

  • Stomach: indigestion that doesn't go away, trapped wind, heartburn, feeling bloated or full very quickly when eating small amounts, feeling or being sick, tummy pain or pain behind the breastbone, difficulty swallowing, unexpected weight loss. 

Data from the Welsh Cancer Intelligence and Surveillance Unit for 2016-18 shows 65.5% of pancreatic cancers were diagnosed at stage 4 where treatment can be difficult or impossible, compared to 19.6% of prostate cancers and 6.3% of breast cancers.

Within the same time frame, 60.3% of liver cancers, 49.3% of lung cancers, 41.9% of oesophageal cancers, 49.4% of stomach cancers and 54.8% of head and neck cancers - which includes the brain - were undiagnosed until stage 4.

Awareness of of the symptoms of the deadliest cancers is said to be as low as 4% in the UK.

Lung cancer is one of the six diseases which has an average five-year survival rate of just 16%.

January 11 marks Less Survivable Cancers Awareness Day and Tenovus Cancer Care has teamed up with the Less Survivable Cancers Taskforce (LSCT) to raise awareness of the diseases and what symptoms people should look out for.

Anna Jewell, chair of the taskforce, said: "We know that delays in diagnosis lead to much poorer outcomes for patients with these rapidly-advancing cancers. We also know the trauma associated with receiving a diagnosis in an emergency setting for both patients and families. 

"These cancers are currently difficult or impossible to treat at later stages and the time from diagnosis to death is often brutally short compared to more survivable cancers. The situation is critical and has been exacerbated by the Covid-19 pandemic.

"The Taskforce is calling for a significant increase in research funding as well as a commitment to increasing resources for early diagnosis for less survivable cancers so we can close the deadly cancer gap."

Some of the cancers are said to be difficult to diagnose because screening programmes are limited

Judi Rhys MBE, CEO of Tenovus Cancer Care, said: "Tenovus Cancer Care fully supports the first ever Less Survivable Cancers Awareness Day and calls by the Taskforce for a significant increase in research funding and resources to close the deadly cancer gap across the UK and ultimately to save lives.

"The statistics shared today are a stark reminder of the inequalities which still exist in the prognosis of less survivable cancers (lung, pancreatic, liver, oesophageal, brain and stomach), a large percentage of which are diagnosed at a late stage and in emergency settings."

As well as a focus on symptom awareness, the LSCT is calling for all UK governments to commit to increasing survival rates for less survivable cancers to 28% by 2029 by eliminating avoidable delays in diagnosis and proactively investing in research and treatment options.

In response to trying to improve cancer diagnosis times, the Welsh Government has said: "We have set out a comprehensive approach to improving cancer outcomes, including important commitments to detect cancer at earlier stages, recover from the impact of the pandemic and meet the suspected cancer pathway waiting time.

"Health boards and trusts will plan and deliver cancer services in response to these commitments."

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