Life after cancer

For many patients, remission of the disease is just the first step in a long and emotionally draining process of recovery

Sun 7 Oct 2012 20.00 BSTFirst published on Sun 7 Oct 2012 20.00 BST

 Charities such as Maggie’s provide support for recovering patients.

Cancer news usually involves unremittingly grim stories about carcinogens or rising cancer rates. But recently there was something more positive. A Cancer Research UK report shows that deaths are "set to fall dramatically" by 2030. The 17% drop will be the result of major improvements in diagnosis, treatment and fewer people smoking. Many more of us can expect to survive cancer.

This is marvellous news but unfortunately it's not the full story. "It is not that a magic wand has been waved and they are all cured," says Ciarán Devane, chief executive of Macmillan Cancer Support. "It actually means many people will be living longer with the disease. The impact of cancer does not suddenly stop when treatment is over. Many cancer patients have to deal with the physical and emotional effects of their cancer for years afterwards."

Christina Buffham, 32, from Staines, was diagnosed with breast cancer when her son, Jack, was only four months old. During her maternity leave from British Airways she had a mastectomy followed by gruelling chemotherapy. "I got the all-clear on Jack's first birthday," she says, "and I thought, 'Life's going to be brilliant now.' I was euphoric. But when all that dies down, it hits you: your body still isn't right and you are terrified that the cancer will come back."

This is a common reaction. "Rates of depression and anxiety are very high when treatment ends," says Dr Michelle Kohn, director of Living Well, a programme that offers emotional and practical support to cancer patients at Leaders in Oncology Care, a private London-based clinic. "Other emotional issues, such as low self-esteem, anger, stress or sleep problems are also widespread."

On top of this, cancer survivors are often battling with physical and practical challenges, anything from huge financial losses, to the side effects of medication, profound fatigue, a confused-feeling known as "chemo brain", or lymphoedima (swelling). Their loved ones, meanwhile, might be increasingly baffled as to why they can't bounce back and make the most of life. "People suffer for years, often in silence, without any real support," says Kohn. "Life after cancer can actually be very difficult and lonely."

It does not help, says Devane, that, "the current system is woefully inadequate at supporting the changing nature of cancer survivors". In the United States, most major cancer units have survivorship programmes where teams of psychologists, nurses, and other specialists offer ongoing information, advice and emotional support to patients when treatment ends. This, of course, is funded by health insurance. In contrast, NHS post-treatment psychological or practical services are limited, to say the least.

The National Cancer Survivorship Initiative (NCSI), a partnership between the Department of Health and Macmillan, was launched in 2008 to help improve the situation but it has a massive job on its hands. According to NCSI research, 60% of cancer survivors have unmet physical or psychological needs; over 33% have problems with close relationships, careers, or have difficulty performing household duties; over 90% have suffered financial losses. Waving these people off with a six-month followup appointment, is simply not working.

The NCSI is launching a range of programmes that take a more holistic approach to the needs of cancer survivors, for example encouraging physical activity, or helping with issues including work and finance. "It is essential the NHS now implements these solutions," says Devane. But there is a very long way to go.

Other cancer charities, in smaller ways, are also trying to plug the gaping hole in post-cancer care. The charity Maggie's runs a free six-week programme called "Where Now?" that aims to help people adjust to life after treatment ends.

There are, in fact, many highly effective ways to cope with tricky post-treatment issues. But without expert guidance, few people know where to begin. "The fear that cancer will come back again is huge for me," says Christina. "It's impossible to ignore. There are reminders everywhere, on TV, the newspaper, the internet. Other people also say things without realising the impact they're having – more than once I've had people tell me about someone they know whose cancer came back, spread and killed them."

In fact, Christina's cancer has already returned, twice. And she has also had to contend with complications from breast reconstructions (so far she has had four reconstructive surgeries). She is now cancer-free and "determined to enjoy life to the full". But still, whenever she feels unwell the fear sets in and – despite a supportive family – she says that she can feel very alone.

"My GP is brilliant," she explains, "But there's only so much she can do. The consultants are absolutely inundated, and understandably, since I don't have cancer, I can't be their top priority. But I also know that all three times my cancer was dismissed at first by doctors, so it can be terrifying, if I feel an unusual symptom, to be told to wait and see."

None of this must dampen the brilliant news about falling death rates. But there is a clear message behind the headlines, and one that must not be ignored: NHS post-cancer treatment services need to change dramatically.

 Frances Goodhart, of The Cancer Survivor's Companion: Practical ways to cope with your feelings after cancer (Piatkus).

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Cancer treatment: sorting the good news from the hype

The newspapers love a cancer research story, but many are misleading or won’t affect patients for many years. But there is plenty of progress worth reporting

Mon 14 Aug 2017 06.30 BSTLast modified on Sat 25 Nov 2017 02.22 GMT

 A consultant studying a mammogram ... eight of 10 women now survive breast cancer. Photograph: Rui Vieira/PA

Every news story about cancer research should come with a health warning: believe the hope, but not the hype. Good headlines are quick and catchy, good science is steady steps taken on a complicated issue over a long time. If a new treatment is still being researched, it could be metaphorical miles and actual years away from getting into the hands or bodies of patients. As blogger Kay Curtin, who has advanced melanoma, puts it: “The media tend to pick one line on a report and run with it, but they do not draw attention or highlight that it’s just a potential benefit, or the fact that many of these are just proven in a petri dish or a mouse and very often do not prove effective when tested on humans. It is cruel to existing patients to make claims with misleading headlines.”

One of the best ways to deal with cancer is to divide and conquer, based on as much knowledge as we can get of how individual tumours work. Treating all cancers from the same part of the body equally isn’t good enough – you must match the right patient with the right treatment.

For example, some breast cancers need a protein called HER2 to survive, and can be treated with the drug Herceptin. Other breast cancers rely on oestrogen and can be treated with drugs, such as tamoxifen, which starve it of this source. Tamoxifen was the first “targeted therapy” for cancer, and proved that there was a more intelligent way to help patients than traditional chemotherapy, which often couldn’t tell the difference between cancerous and healthy cells.

As Dr Justine Alford, senior science information officer at Cancer Research UK, explains: “As science continues to reveal more about cancer, we’re starting to think of it in a different way, as we know that two tumours affecting the same part of the body won’t necessarily behave in the same way. Some will be more aggressive; some might be resistant to one treatment, but respond to another. Our understanding of these unique features of different tumours has helped to produce one of the most exciting areas of research for all cancer types: personalised medicine.”

Prostate cancer, according to Dr Robert O’Connor, head of research at the Irish Cancer Society, has in recent years “seen the greatest revolution in terms of new agents”. One huge step forward was the use of radiation to reduce the impact of prostate cancer that spreads to bones. Another was the development of better diagnostics, including PSA tests, which mean that most men are diagnosed while their prostate cancer is still curable. The jury is still out on the ideal timing of treatments, but researchers at the University of Birmingham found this summer that giving a drug earlier saved more lives.

Eight out of 10 women now survive breast cancer, but research won’t be over until no one dies and survivors have a far easier journey. Researchers are trying to find out more about how we might prevent breast cancers, how some become resistant to therapy and how to stop them from spreading.

With the number of cancer survivors in the UK expected to increase by 1 million each decade, “survivorship” – how to live as comfortably as possible with and after cancer – is an important area of research for all cancers.

Lung cancer, however, remains deadly. There are often no symptoms until it has taken over a large part of the lungs or spread to other parts of the body. On top of this, it grows quickly and is sometimes intrinsically resistant to chemotherapy. Other cancers that don’t come with clear early warnings include pancreatic cancer – the Pancreatic Cancer Research Fund says it is“the only cancer that has seen no improvement in [survival rate] over the last 40 years” – and oesophageal cancer, which is on the rise, partly due to obesity and alcohol use. Pancreatic and brain tumours are hard to get drugs into. The brain is surrounded by a very selective gatekeeper called the blood-brain barrier, which normally keeps possible poisons out; while as much as 90% of pancreatic tumours comprises of a dense tissue called stroma, which surrounds the tumour like a shield.

Researchers are looking for kinder, more effective treatments for these cancers, as well as ways to catch them sooner. Innovative ways to get drugs into brain tumours, such as modifying bee venom or adjusting the chemistry of nanoparticles, offers hope. Lung cancer research, much of it at the University of Manchester and UCL, is carving out a better understanding of how the cancer works and how we can treat it better. Meanwhile, both pancreatic and oesophageal cancers had breakthrough discoveries this year when subtypes of each cancer were discovered, meaning they can both potentially be treated with personalised medicine in the future.

Of course, if we already knew the answer, it wouldn’t be research. The greatest challenge, always, is the complex and wily nature of cancer, but there’s no getting away from the fact that finite funds aren’t evenly spread across different cancer types. More people donate towards breast than lung cancer research, partly reflecting the number of people affected by breast cancer and the well-organised advocacy behind it. And according O’Connor, in Ireland, of the tens of thousands of cancers diagnosed every year, less than 200 are in children. However, because childhood cancer is so emotive, many more donations come in for paediatric than geriatric cancers.

In a recent video on Twitter, the charity Breast Cancer Now said that every £25 raised supports one hour of research. It’s impossible to guess at how many more hours will be needed before we can live free of the fear of cancer. The only certainty is that we won’t give up.



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