Questions To Ask Your ClinicianDownload
Find sarcoma trials in the UK
If you are searching on our site or elsewhere, having information about your particular sarcoma may help you to narrow down your search. For example:
- The type of sarcoma you have; bone or soft tissue sarcoma or GIST
- The part of your body affected
- The subtype you have e.g. leiomyosarcoma, angiosarcoma, Ewing’s sarcoma (if you are unsure about your subtype speak to your sarcoma team or GP)
Some trials may look at one sarcoma subtype, whereas others may include a range of sarcoma-types or other cancers. If you find a trial you think you may eligible for you can discuss it your clinical team.
We aim to feature all trials for sarcoma patients on this site. However, there may be phase 1 trials recruiting patients from a range of different cancer types which may accept sarcoma patients. For more information on the availability of these trials, talk to your clinical team.
Talk to your clinical team
A medical referral is the only way to join a trial. Your clinician can refer you to trials appropriate for you. They will also be able to contact the team running the trial and find out more information about it. Your clinician will be able to review the information about the trial with all of the things they know about you, your current health and previous treatments. They are also experts on your particular care and pathway and will be able to answer questions you may have about trials.
Download our questions to ask your clinician info sheet.
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.
Give your consent
Informed consent is about making sure you understand what you are agreeing to. If you decide to take part in a trial it is a legal and ethical requirement that you understand all of the relevant information about it. This will include understanding what the trial is for and what will be expected of you when taking part. It is also important that you understand the potential risks of taking part.
Once you have been referred to a trial, the research team will provide you with more detailed information about it. They will give you written information about the trial and answer any questions you have. It is important that you understand what is expected of you before agreeing to take part. You will then be asked to sign a consent form.
You can change your mind about taking part in a trial at any point, even after signing the consent form or beginning treatment.
Caring for yourself and others
It can be helpful to plan ahead for care needs when joining a trial. You may be required 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. Similarly 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 Bureau 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.
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 clarify your thoughts 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.
For further information and support please contact our support line or see our emotional support page. You can also download our clinical trials FAQs.