DRUG trials undoubtedly mean more people than ever before are living longer with cancer. To me, someone who has worked with people with cancer for more than 20 years, seeing the constant advancements thanks to huge levels of funding, is wonderful.
However, I do worry that the psychological impact of drug trials on people with cancer, and their family and friends, is often overlooked.
Recent research from the Royal Marsden revealed that many patients undergoing cancer drug trials have ‘unrealistic expectations’ about the end result. It is understandable to place a lot of hope on a drug trial. Those put forward are often at an advanced stage and have got to the point where trials are a last chance of life and so, they can overlook doctor’s warnings in favour of what they want to hear.
The pressures on a person with cancer are endless and treatment options are often the most daunting - you are suddenly thrown into a new world, where you’re expected to understand medical language and make life-changing decisions at a time when you are at your most vulnerable. The stress of making such difficult decisions can have a profound psychological effect but often those who come to Maggie’s say that they didn’t know who to talk to as they don’t want to worry loved ones or bother their medical team.
With drug trials, people also have the so-called ‘postcode lottery’ of selection to find their way through. Your hospital, GP, type of cancer, stage of cancer, previous treatment, age and general health are all factors. Not being chosen can leave people feeling let down and very low, accentuating the feelings of depression often linked to cancer. Our expert staff often hear that people feel that they are not getting the ‘best’ care if they’re not put forward for a trial.
If you are selected, there is the decision about taking part. To people who don’t have cancer the opportunity to extend your life may seem like an easy decision, but for many the thought of more treatments, medication and time in a hospital can be daunting.
People can be left trying to make critical decisions about their health in unchartered territory.
Consultants, friends and family often also encourage participation and unintentionally apply unhelpful pressure. Talking to someone else might help. The cancer support specialists at Maggie’s keep up to date with the latest trials and can give impartial support. Then there is the hope that the trial will be a ‘miracle’ cure even though success rates for some trials are low.
With family and friends hopes all pinned to the success of the trial, when they don’t work the person with cancer can feel as if they have let everybody down or not tried hard enough.
It’s important to realise though that like people, no cancer is the same so not all treatment will suit everyone.
Laura Lee is Chief Executive of Maggie’s. Maggie’s has a network of cancer support centres across the UK offering free practical, emotional and social support to people with cancer as well as their family and friends. www.maggiescentres.org