Wendy was invited to take part in a chemotherapy trial after being diagnosed with bowel cancer. She decided to take part, and was allocated to the experimental group. She experienced quite severe side effects but continued to the end of the treatment.
Wendy was diagnosed with colon (bowel) cancer in late 2006 after a colonoscopy. When the tumour was removed, the surgeon also took out lymph nodes for analysis and told her she might need chemotherapy. She went back for an appointment at a nearby specialist hospital, and saw a professor who explained that the cancer had started to spread to her lymph nodes and that chemotherapy was recommended. The professor was running a clinical trial of a drug called Avastin (bevacizumab), which had previously only been tested in advanced bowel cancer, but which might be promising for people diagnosed with the condition at an earlier stage.
Wendy was asked if she would like to join the trial. She was told that half the people in the trial would be allocated to the standard treatment (six months of chemotherapy), and half to the experimental group (six months of chemotherapy plus Avastin). People in the intervention arm would have Avastin for a year, at first alongside the standard chemotherapy and then on its own for the next six months. The possible side effects were explained. Wendy was given two weeks to think about it. The consultation with the professor was taped so she and her family could listen to it again while she made up her mind.
A friend who was a doctor helped Wendy do some research into Avastin and she was interested in the possible benefits of taking it. However, she was worried about the impact on her family if she did experience significant side effects and thought it might be selfish of her to take part. But her children really wanted her to be in the trial, because they felt any extra chance of beating the cancer was worth making sacrifices for as a family.
In the end, after much uncertainty, discussion and prayer, she decided to take part, and was allocated to the experimental group. Her husband had been worried about the possibility that she might agree to take part but then be randomly allocated to the standard treatment group. Wendy herself said she would have felt cheated if this had happened, but she would probably still have taken part so that the research could benefit other people.
Taking part meant she had to attend the specialist hospital every three weeks where Avastin was given by intravenous drip. The side effects were substantial, including diarrhoea, nausea and vomiting, extreme tiredness, mouth sores, and blistering on her hands and feet. Supporting her was demanding for the whole family, although they soon established a routine. Wendy had to give up work, so she lost her salary, as well as having to meet travelling costs to and from the hospital. At times the side effects were so bad that she thought about dropping out of the trial, but she was motivated to keep going because she wanted the trial to succeed and did not want to make the trial coordinators have to find another volunteer instead.
One benefit of taking part in a trial that Wendy has anticipated was that she would be seeing the professor regularly and getting the most expert care, but in fact she never saw him again once she;d agreed to take part. Contact with staff at the hospital was often rushed, with little continuity between appointments. She would have liked to know beforehand that this would be the case. There was a phone number to ring with any queries but sometimes she got an answer phone and had to wait for someone to contact her. She had great support from her GP and local hospice team, but it would have helped them to care for her better if they;d been given more information about the likely side effects. She had also been told she would get free medication to deal with any side effects, but found she had to pay for medication for her mouth ulcers prescribed by the GP.
Wendy’s treatment finished 2-3 months before the interview. It felt quite strange at first no longer having so much treatment and monitoring. Looking back, she feels she has emerged stronger from her experience, but it feels too soon to say whether she is glad she took part. Until she knows what the longer term outcome for her, it’s hard to judge whether the side effects were worth it. She believes it is important for people to take part in trials so that we can improve our knowledge of what will help future patients, but advises people to weigh up their own circumstances carefully and get as much information as possible before they decide.