A decision to take part in a clinical trial is a personal one. Your choice may be influenced by many different factors in your life and the practicalities of taking part in the trial itself.
What the trial involves
Clinical trials can offer the opportunity to try new treatments. However, being part of a trial does not necessarily mean you will have access to a new drug. The treatment you will receive during the trial will depend on how the trial is designed. For example, you may be given a new drug, placebo or the standard treatment which is already being used. Trials may also look at different doses or methods of delivering treatments.
Your decision to join a trial may be influenced by a number of factors including:
- The type of treatment you may have
- Possible side-effects of treatment
- Frequency of tests and scans
- Time you will spend in hospital
Phase 1 and 2 trials are not normally expected to offer any direct benefit to patients taking part in them. Although this does sometimes happen, patients should not expect it to be the case. It is important to remember that everyone taking part in clinical trials is helping to improve treatments for patients in the future.
It’s also important to know that once you have been referred to a trial, further assessments may be carried out to ensure you meet the criteria for the trial. This may include blood test and scans. Trials may have a limited number of places, so there is a possibility that a trial may be full even if you are eligible to take part. Also, if you do participate in a trial, it may take a long time for the results to come through and some trials can close early.
Not all research for sarcoma requires directly taking part in a clinical trial. You can also get involved and help to improve treatment for sarcoma by completing surveys about your treatment, symptoms and quality of life.
“Not only are you helping future treatments for sarcoma patients, but you also feel some sort of achievement in yourself, that you are contributing.”
Liz, clinical trials patient
Our Support Line team can talk to you about clinical trials and help you to understand what to expect.
Getting practical and financial support
It can be helpful to plan ahead for care needs when joining a trial. You may need to travel regularly to a hospital, stay away from home, or you may have less energy or feel unwell during treatment. It might be possible to arrange support from family or friends in advance.
In some cases, hospitals may have accommodation where you can stay with a family member or carer. Ask your research team if this is available and if you are required to pay for it. If appropriate, your GP or CNS can refer you onto other services for a package of care, adaptations or equipment to be put in place for when you are feeling unwell. There may be support available if you are usually a carer for others.
Many trials cover expenses, travel costs and in some circumstances accommodation. It is important to find out what expenses are covered, for example whether the costs of your partner or carer’s travel is included. Trials may also have different policies for refunding expenses. Talk to your research team about what expenses are included and how you can claim them.
If you need to take time off work or experience financial difficulties, your sarcoma clinical nurse specialist can advise you on the types of benefits or funding you can apply for. Your local Citizens Advice can also give you benefits information and many branches can help you fill out application forms. Macmillan Cancer Support have a number of benefit advisors who offer financial advice and support.
Getting emotional and psychological support
Dealing with a diagnosis of sarcoma and making choices about your treatment can be very challenging. Talking things through with friends and family can be a good way to get support with how you are feeling and to help you make a decision about treatment. Sometimes it is easier to open up to professionals or to others who may have had similar experiences to you. You may also consider:
- Talking to your sarcoma team including your clinical nurse specialist
- Attending a support group or joining and online forum or social media group
- Calling the Sarcoma UK Support Line
- Talking to a counsellor or psychologist
- Talking to support staff at Macmillan, a Maggie’s Centre or other cancer support services.
Your clinical team including your sarcoma clinical nurse specialist, research nurse and GP will be able to talk through your concerns with you and refer you on to appropriate support services if required.
Quality of life
When making the decision about whether or not to join a trial, there may be clear advantages and disadvantages. Thinking about your quality of life is about weighing these up, not only against each other, but also in the context of your life and well-being.
Being part of a trial may involve being treated with drugs causing side-effects. This might be a particularly important to think about if you are approaching the end of your life and you want to stay feeling well for as long as possible.
You may find that the taking part itself can provide a sense of achievement and fulfilment despite negative aspects. Also, in cases where the trial may offer a chance to receive more effective treatment or to prolong life, this may outweigh any potential downsides.