The psychological impact of drug trials on people with cancer
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.
As someone who has been working with people with cancer for over 25 years it is wonderful to see constant advancements being made in the world of cancer treatment. Thanks to huge levels of funding new drugs are being trialled constantly for a wide range of cancers meaning more people are living longer with cancer than ever before. However, while it is good news that such advancements are being made, I worry that the psychological impact of drug trials on people with cancer and their family and friends, is often overlooked.
Research from the Royal Marsden revealed that many patients undergoing cancer drug trials have 'unrealistic expectations' about the end results of their trial. It is of course understandable to place an inordinate amount of hope on a drug trial, when often those put forward are at an advanced stage of cancer and have got to the point where standard therapy is no longer working. These trials can often be a last attempt for people 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 about your personal health can have a profound psychological effect but often the people with cancer that come into Maggie's say that they didn't' know who to talk to about their concerns as they don't want to worry loved ones or bother their medical team.
Initially, there is the so-called 'postcode lottery' - which hospital you are being treated at can determine which medical trails are on offer to you. Some trials are on offer at hospitals across the country, but some are only offered to specific GP or hospital catchment areas. Other conditions can be types of cancer, stage of cancer, previous treatment, age and general health. All these factors mean there is a strong chance of not being picked and the feeling of being let down can make people feel very low and accentuate feelings of depression that are often linked to cancer. In our centres we often speak to people who feel that they're not getting the 'best' level of care if they're not put forward for a trial.
If you are chosen for a trial there is then the pressure of whether to take part at all. To people who don't have cancer the opportunity to extend your life may seem like an easy decision, but for many people with cancer the thought of more treatments, more medication and more time in a hospital can be a daunting prospect. There's also the fear of the unknown - especially with trials at stage 1 there is no benchmark, meaning people can be left trying to make critical decisions about their health in unchartered territory.
Consultants, friends and family often encourage participation in a trial and feeling the pressure of keeping people happy might push someone to making a decision that they aren't sure about. Talking to someone outside of your immediate circle and not part of your medical team can help you to make sense of whether a drug trial is the best option for you. Our cancer support specialists are often informed on the new trials on offer and are able to offer impartial support in a confidential setting, helping to guide people through the decision making process.
Then there is the hope that the trial will be the 'miracle' cure. In fact the Royal Marsden research showed that in phase 1 clinical trials typical cancer response rates were between 4 per cent and 20 per cent. Enrolled patients, who often have advanced disease that is not responding to standard therapy, survived for around six months on average. The fear that people with cancer and their family and friends have causes so much pressure for the trials to work that for those that are not successful it can sometimes feel that they have let people down or not tried hard enough.
It is important to acknowledge that these are very real and normal thoughts and fears to have and that like people, no cancer is the same so not all treatment options or trials will suit everyone. If you or a friend or family member is going through or considering clinical trials then talking to someone impartial can often be a great help and the professional staff are always happy to help answer any questions or listen to any reservations.
Adapted from an original blog post written by Dame Laura Lee for the Huffington Post.