Cancer’s lost generation: the teens and young adults ‘forgotten in the middle’

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diagnosis, misdiagnosis, teenagers, Young adults, young people

Cancer’s lost generation: the teens and young adults ‘forgotten in the middle’

After six months of misdiagnosis, Stephen was eventually told he had bowel cancer. He was 15. A straight-A student, he had always wanted to be a doctor. Now 18, he says: “I’ve lost faith in the healthcare system.” He visited his GP numerous times with “crippling symptoms” and went to A&E on five occasions. “I have a strong family history ofbowel cancer. At one point, we asked the doctor if I might have cancer and demanded further scans. He said: ‘No, definitely not, you’re too young.'”

Over the past three decades, cancer survival rates have increased dramatically. But for teenagers and those in their 20s, the outlook is less promising – several reports have shown that improvements in outcomes for them do not match those among children and older adults.

To investigate this, the National Institute for Health Research has launched Brightlight, a cohort study that hopes to become the largest ever of young cancer patients (aged 13-24). It intends to recruit more than 2,000 people by next April. In earlier studies, two of its leaders, Professor Jeremy Whelan, a specialist in teenage oncology atUniversity College London Hospital, and Dr Lorna Fern of the National Cancer Research Institute, found that one of the critical factors for the “survival deficit” is delayed or mis-diagnosis. Invariably, this leads to a poorer prognosis as the more advanced the cancer is, the harder it is to treat.

According to a study published in the BMJ in October this year, those aged 16 to 25 are twice as likely as older adults to have three or more GP consultations before being referred to a specialist and a 2010 survey found more than a quarter of young cancer patients had visited their GP at least four times, many presenting with multiple “alert”symptoms (lumps, swellings or persistent unexplained pain) before their eventual referral. More than a third of participants at this year’s Teenage Cancer Trust (TCT) conference (the aptly named Find Your Sense of Tumour) were only diagnosed on emergency. Among many young patients there is overwhelming resentment of GPs; a sense that they were not taken seriously, their symptoms dismissed as adolescent fatigue, stress, or persistent hangovers.

It is true that cancer is rare among young people. But it is also the leading medical cause of non-accidental death among them – and the TCT says that in the past 30 years, cancer among teens and young adults has risen by 50%; for the first time, teenage cancer cases outnumber those of children. Young people are also known to contract the most aggressive forms, exacerbated by their growth spurts. Failure to detect the warning signs at an early stage can have devastating consequences, as Stephen’s case shows; his cancer was recently diagnosed as incurable. Raising awareness, he says, is essential to dispel the myth that young people are immune – a situation not helped by NHS campaigns such as Be Clear on Cancer, which feature only older faces.

Greater awareness is also needed to enable GPs to spot the “alarm-bell” symptoms. Since younger patients tend to develop the rarer forms of cancer – leukaemias, lymphomas, sarcomas, germ-cell tumours and cancers of the central nervous system – there is an urgent need for more research to group the specific symptoms of these malignancies.

At the moment, teens and young adults are also seriously under-represented in clinical trials. In a 2008 study, Whelan and Fern found almost half of patients aged 10-14 participated in a trial, but this fell to 25.2% for 15 to 19-year-olds, and just 13.1% for those aged 20-24. For too long, they argue, clinical and research communities have failed to recognise teens and young adults as a distinct category with unique biologies, and they have been left “forgotten in the middle”.

It is the same story when it comes to hospital care; teens and young adults have been identified as a “lost tribe”, caught between paediatric services and those designed for older patients. The National Cancer Reform Strategy (2007) estimated that 70% were not treated in age-appropriate settings; many were left on children’s wards, with the disturbance of crying babies, or isolated in bays with elderly patients and surrounded by constant bereavement.

Those lucky enough to be treated alongside their peers at a young-person unit describe the experience as a godsend. “I was a total mess before I found Teenage Cancer Trust,” says Jasmine Singh, 22, who is recovering from Hodgkin’s lymphoma. She was transferred to a TCT unit with specialist young-person cancer nurses and counsellors, as well as a team of support workers offering education and career advice – a lifeline for young sufferers who fall behind with their studies or training.

In 2005, government directives recommended that all 13 to 24-year-old cancer patients be treated in such units – but at the moment there are only 27 in the UK, and only around half of all young patients are treated in one. The same recommendations stressed the importance of “age-appropriate care”, but there is no real consensus over what this means. The Brightlight study sets out to provide some answers. By interviewing young adults over a five-year period, it aims to gain a clearer insight into the type of care that benefits them the most.

One of the study’s pioneers was Stephen himself, in his capacity as a young adviser at the National Cancer Research Institute. “I don’t know how long I have left because I haven’t asked,” he says. He refuses to waste a moment on self-pity – in between chemotherapy treatments, he is too busy fundraising for TCT, determined to improve the outlook for other young people with cancer.

Special report: Intersex women speak out to protect the next generation

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adults, androgen insensitivity syndrome (AIS), atypical genitalia, Children, chromosomes, disorder of sex development (DSD), gender, hypospadias, Identity, internal sex organs, intersex, operations, support, surgery, treatment, Young adults

Special report: Intersex women speak out to protect the next generation

It has taken Holly Greenberry, Sarah Graham, Dawn Vago and Elizabeth Jo Roberts years to go public with their stories. Born into a world that insists on dividing people into two sexes, they did not always know how they fitted in. They were born to typical families in typical areas of Britain, but none of them developed into typical male or females. They are intersex.

An estimated one in 2,000 babies is born with an intersex condition or a (controversially named) disorder of sex development (DSD), which means that they are born with a reproductive or sexual anatomy that does not fit the typical definitions of female or male. This can include atypical genitalia, chromosomes or internal sex organs.

The women argue that their very existence has been “eradicated” by British society. Generations of children have been operated upon to “normalise” their genitals or sexual anatomy, while official documentation, from birth certificates to passports, requires a male or female box to be ticked.  They argue it’s one of the last “human rights taboos” in the western world.

The women have a type of androgen insensitivity syndrome (AIS), which means they have XY chromosomes, but are partially or completely insensitive to testosterone – they are all infertile.

The group has come together to launch a campaign, calling for the Government to urgently review the way intersex people are treated. Following on from Germany’s decision to allow newborn babies to be registered as neither male nor female, their recommendations include the option to leave the sex on British birth certificates blank, measures to protect babies or young people from irreversible and non-consensual treatment and surgery, better emotional support and increased education.

“We are at a tipping point,” said Greenberry, co-founder of Intersex UK. “Most intelligent human beings would be completely surprised and utterly dismayed at the civil inequality and human rights abuses that healthy intersex children and young adults are facing.”

She added: “We need to sit around the table with the Government because we have lived through it. We are positive role models, and professional and intelligent women, who want to represent the needs of children so that the problems we experienced aren’t replicated.”

In the 1960s, it became the norm to operate on children with atypical sexual anatomy at a young age. Doctors assigned the child’s gender and operated to reinforce it. Although attitudes started to change around the turn of the millennium, and clinicians say they have moved to a more “multi-disciplinary” approach, there is still no record of the number of operations carried out, according to Professor Sarah Creighton, consultant gynaecologist at University College London Hospitals.

This year, the UN Special Rapporteur on Torture condemned non- consensual surgery on children to “fix their sex”, saying it could cause “permanent, irreversible infertility and severe mental suffering”.

XXXora, a 33-year-old intersex artist from London, who supports the women’s campaign, refused an operation. She was born with ambiguous sex organs and raised as a boy, but describes herself as “super-feminised from the beginning”. She said: “I never had surgery or hormones. We talked about it, but then I wouldn’t be me. I don’t want to morph into a blue or pink box; I want to stay in my silver box.”

But the campaign is not all about surgery. Certain intersex people, such as Greenberry, are struggling to correct the sex marked on their birth certificates, which makes it impossible to marry and more difficult to adopt children.

Lord Wilf Stevenson, opposition whip and former special adviser to Gordon Brown – who has a more common DSD called hypospadias – supports the campaign and has raised concerns with ministers. “The issue is that the current law has been overtaken by medical technology,” he said.

There is also a need to provide long-term emotional support for intersex people. Ellie Magritte (not her real name), the mother of a girl with AIS and a member of the support group DSD Families, said adults “need and deserve much greater investment in adult DSD care, focusing not on gender, genitals and genetics, but on health, wellbeing and happiness”. She said not all people with a DSD define themselves as intersex, but added: “The main challenges for families and kids is the social context in which we live with these conditions.”

Pia Clinton-Tarestad, head of specialised commissioning at NHS England, said that the NHS is “working to assess the services we commission for intersex people”, and that it understood that “issues surrounding the timing of, and consent to surgery, are controversial”. She added that best practice involves “co-operation and agreement” between child, parents and a multidisciplinary clinical team.

Holly Greenbury

When Holly Greenberry was born, almost four decades ago, doctors spotted a degree of sexual ambiguity. She has XY chromosomes, but also partial androgen insensitivity syndrome, leaving her partly insensitive to testosterone. She was assigned a male sex on her birth certificate, but she did not develop secondary male characteristics during puberty. She knew her gender was female and underwent treatment and surgery throughout her teens. Now, the businesswoman, from south-west England, is in the process of adopting a child. Because she is unable to change her name or sex on her birth certificate, adoption is harder and marriage impossible.

“I’ve never been completely male nor completely female in my genetics. I didn’t masculinise the way a male was expected to, and my body feminised in certain areas. I didn’t have the words to express myself; I didn’t know how I fitted in. It left me feeling really isolated and, while I tried to identify as male, I couldn’t do it. It was like having a series of repetitive panic attacks. Surgery was horrifically damaging and led to huge number of follow-up surgeries. It all could have been prevented if there had been more medical understanding and if there had been less haste in trying to guess which label best fitted. I should have been allowed to be an ambiguous teenager with the freedom to express my natural gender.”

Dawn Vago

Thirty-three years ago, when Dawn Vago was born, she looked like a typical baby girl. But when she was a young child, doctors told her parents that she had testes which would have to be removed. The married singer and programme director from Warrington, Cheshire, is genetically XY and has complete androgen insensitivity syndrome, which means she is totally insensitive to testosterone. She has been on oestrogen replacement therapy since she was 11.

“The doctors told my parents there was no one else in the UK with this condition. I felt alienated from all of my classmates. I always identified very much as female, but had issues accepting myself. When I first read my file and saw my diagnosis, my world completely exploded. I found a support group and all of a sudden, felt like I wasn’t alone. The moment of joy turned into anger. I was in my early twenties and had spent my whole life and childhood feeling alienated. I realised that it doesn’t have to be this way.

“The doctors told my parents that they should push me into a career and make me become a busy woman, so maybe I wouldn’t have time to settle down and have a family. They said I would find it very difficult to find a partner. Two and half years ago, when I walked down the aisle to my incredibly handsome husband, deep inside I was sticking a middle finger up to the entire medical establishment. I am very proud of who I am and I love my body, but I hate the journey that I’ve been on.”

Elizabeth Jo Roberts

Elizabeth Jo, a 29-year-old freelance journalist from Edinburgh, was brought up as a girl. At three years old, when doctors discovered undescended testes, they removed them without her parents’ consent. She was told at the age of 10 that she was infertile and, in her mid-teens, that she had androgen insensitivity syndrome, having been born with XY chromosomes. She met other people with intersex conditions for the first time only a few weeks ago.

“My parents told me I couldn’t have children at 10 years old. I took it pretty badly. It’s like when you’re winded and all the air is sucked out of you. It destroyed my adolescence. I got bullied quite a lot. When I was 10 or 11, I was first given oestrogen pills, but I used to forget to take them, so I never really developed significantly.

“I struggled with identity issues throughout my adolescence and even in my twenties. I’ve left it late on in life to meet others like myself. It has been one of the best things I’ve done; emotionally cathartic. I suffered quite heavily from depression. I want to help others to not feel the same way. They don’t have to feel bad about themselves. Social change takes years to happen, but we should be living in a society where people don’t feel bad about their identity because they have chromosomes that are variations on the norm. They should have freedom to express themselves.”

Sarah Graham

Sarah, 44, did not find out the truth about her diagnosis until her early twenties.  The counsellor from Surrey has complete androgen insensitivity syndrome. She presented at birth as a baby girl and was raised as one, but she has XY chromosomes and was born with internal testes, instead of ovaries. When doctors removed them, at the age of eight, they told her they were removing her ovaries to protect her from cancer and  imminent death.

“They should have told my parents the truth about my diagnosis. The lies were enormously damaging to me and affected my life. They put me on oestrogen replacement therapy when I was 12 years old but, if they had left my body intact, I would have produced hormones naturally. Every six months, I was prodded and poked by an army of medical students.

“Once I saw my diagnosis, I felt like a total freak, like I didn’t belong, and was offered no support. I felt like the only person in the world with the condition and that no one would love me. I went into a massive period of self-hatred and self-destruction, which fuelled a drug and alcohol addiction. Children need to be able grow up intersex if they want and parents shouldn’t be so pressured to make a decision. We must be given the space to exist.”

Many young cancer patients fail to get early diagnosis, survey reveals

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Teens, Young adults

Many young cancer patients fail to get early diagnosis, survey reveals

A quarter of young people with cancer visited GPs four times or more before their symptoms were taken seriously and they were referred to a specialist, according to research.

A survey at a Teenage Cancer Trust conference for 300 young cancer patients asked for the experiences of 13- to 24-year-olds after they first experienced symptoms.

The researchers said their findings highlighted “the serious issue of delayed diagnosis” in the age group. Many patients said GPs told them they had an infection or virus, sports injury or stress, or told them to take painkillers. Three patients said they were told specifically they did not have cancer.

More than a third (said they believed learning about cancer at school would have helped them identify their symptoms sooner, and 59% wanted to see it included in the national curriculum.

The trust is launching the first teenage cancer awareness week, running until 4 May, and has produced a schools pack to help teachers talk about cancer in the classroom.

Professor Sir Mike Richards, national clinical director for cancer, said: “Early diagnosis is best achieved through the education of young people to increase their confidence in talking to doctors and helping everyone recognise the signs and symptoms of cancer in this age group.

“This is a major programme of work and something which we are working closely with Teenage Cancer Trust to achieve.”

Simon Davies, the trust’s chief executive, said: “We have been urging for cancer to be on the national curriculum for many years. We’re still waiting. That’s why we’ve developed our own education team to help teachers tackle this difficult topic and created teenage cancer awareness week to help raise awareness of the five most common signs of cancer.

“Young people need GPs to take a ‘three strikes’ approach. If a young person presents with the same symptoms three times, GPs should automatically refer them for further investigation. The two-week referral for suspected cancer is a major breakthrough but young people won’t benefit until GPs think cancer quicker.”

Five of the most common symptoms and warning signs in young people are: unexplained and persistent pain; a lump, bump or swelling; extreme tiredness; significant weight loss; and changes in a mole.

Self-harm figures soar in a generation under pressure

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Bullying, Children, mental health issues, Self-esteem, self-harm, Teens, Therapy, Young adults

http://www.independent.co.uk/life-style/health-and-families/health-news/selfharm-figures-soar-in-a-generation-under-pressure-6272072.html

More than 1,800 children aged under 10 have been hospitalised for self-harming in the past decade, sparking fears of a generation unable to cope with the pressures of childhood.

Last year alone almost 150 boys and girls aged 10 or under were admitted to hospital for intentional self-harm, including more than 80 pre-school children.

In a sign of a worsening problem, the number of girls and women aged under 25 admitted in the past 10 years has soared by 44 per cent to more than 26,270 in 2010-11. Among boys and men of the same age, the figure has leapt by a third to 11,656. The figures are for hospitals in England.

The Department of Health (DoH) admits that “only a fraction” of cases of self-harm are seen in hospitals, so the true scale of the crisis will be much larger.

“These shocking statistics should act as a wake-up call to everyone who cares about the welfare of young people,” said Lucia Russell, the director of campaigns, policy and participation at YoungMinds, a charity which is working with the Government to redesign mental-health services for children. “Self-harm is often dismissed as merely attention-seeking behaviour, but it’s a sign that young people are feeling terrible internal pain and are not coping.”

According to officials, an episode of self-harm is often triggered by an argument or another upset, but can also be linked to bullying, low self-esteem, and worries about sexual orientation. The Government has promised £32m to improve access to psychological therapies for children and young people over the next four years.

Paul Burstow, a Liberal Democrat health minister, told The Independent on Sunday that, for too long, mental illness among children was overlooked by the NHS. “It has really suffered from being the poor cousin of mental health, which was itself the Cinderella service. It was not a priority for the NHS.

“For half of all mental health problems in this country the symptoms first show during adolescence. Let’s look at the early signs and support families with proper therapies. It is about moving to intervene early.”

More than one in 10 children aged 15 to 16 report having self-harmed in their lifetime. However, the DoH insists it is “rare for very young children” to self harm. A million children will have a diagnosable mental-health disorder. Childhood mental illness costs up to £59,000 per child every year.

The rise in hospital admissions has been steepest among women aged 17 to 25, rising by 50 per cent between 2001 and 2011.

Separate figures released last week show 40,000 under-25s were rushed to A&E in 2009-10 after self-harming, up from 36,000 in 2007-08.

Earlier this year, the Government launched a new strategy, No Health Without Mental Health, to tackle the problem. Officials are working with young people, parents and YoungMinds to redesign specialist services for children, focussing initially on cognitive behavioural therapy and parenting therapy.

Ministers hope to reduce by as much as 40 per cent the number of people in adulthood who have mental health problems. The economic and social costs of mental health in the UK are almost £100bn.

Last month a study by the charity Mind warned that a combination of rising demand and spending cuts was threatening the viability of mental health services.