Karen was diagnosed with melanoma in 1997. It came back in 2005 and she joined a clinical trial. Several times she has given extra blood samples for research purposes. She is happy to take part in any research into her condition.
In 1997 a mole on Karen’s foot was diagnosed as melanoma (a form of skin cancer). It was removed, but the melanoma returned in 1999 and she had another operation. She was given the all-clear in 2005, but only a few months later started getting stomach pains. It was discovered the cancer had spread to her small intestine and other organs, so she was recommended for chemotherapy. She was offered a chance to take part in a clinical trial, in which she would be allocated at random either to the existing treatment or a new drug.
Karen immediately decided to take part, and was disappointed that the doctors insisted she wait for a couple of weeks to be sure she was happy with her decision. She just wanted to get started, and she was pleased to be allocated to the group getting the new drug. In the first year, she had to go to hospital to be monitored every three weeks, then every three months. Now in 2009 it has just been changed to every six months. Karen feels lucky to be one of the few people who did really well on the trial and has survived.
Throughout her care she has often been asked to allow some of her blood samples to be used for research purposes. To her this is really not a big issue, and she is usually not that interested to read long information leaflets about it. Karen says she’s a professional in her own field, and doctors are professionals in their field. She is happy to trust them to know what they’re doing and to behave ethically, so she does not feel a need to ask a lot of questions about how the samples will be used. It is still right to be given the information and asked for consent, however. If she did not want to take part, she would feel comfortable in saying no, though there are few examples she could think of where she;d say no, apart from a trial which involved taking drugs she did not currently need (for instance to see if they prevented some condition she did not yet have).
Karen describes her reasons for taking part in the clinical trial as totally selfish;- it was about her personal benefit, not about helping others. Giving samples is of less direct benefit to her personally, but it’s easy to do and she can see no reason not to. But even in this kind of research she feels that saying yes creates a bond between researcher and patient, which gives her a sense of being important to the research team. It also gives her back some sense of control, which is one of the first things you lose when you have cancer. It can also be fun and interesting to feel you;re part of a big international study. She advises others to take part in research if they feel comfortable and safe and they trust the staff, but if they have any doubts to stick with standard treatment. She would like more evening or weekend appointments so working people can take part more easily.