How to get a diagnosis

How to get a diagnosis

 Presentation and diagnosis

Brain tumours can present in a number of different ways and most symptoms, such as worsening fatigue, are not specific to brain tumours and may be symptoms of other illnesses, so they can take a while to diagnose. Always consult with a GP.

Talking to your GP

• Ask if you want a specific GP: for example, a male or female GP or one that speaks your first language
• You can ask a friend, relative or advocate to come with you for support

Be prepared – many doctors’ appointments are only 10–20 minutes

• Be open and honest. GPs hear personal things all the time and are trained to deal with them in a professional and supportive way.
  It’s important to share things about your life too. Sometimes patients are fearful that the doctor isn’t interested or that it isn’t relevant, but providing detailed information helps a doctor get the full picture of your overall well-being and lifestyle that might contribute to your health.
• Don’t be afraid to bring up pain or a feeling that’s bothering you, even if it’s embarrassing. Your doctor’s job is to help you feel better, and they are required to protect your privacy.
• Prepare a list of the concerns you want to discuss. Think about your symptoms, how long you’ve felt this way, how it affects your life and any changes in that time
• Think about any recent events that might have impacted on your health
• Gather information on your medical and family history
• Write down any questions you want to ask. For example, you may want to know if medication could help, what you can do to help yourself or how long treatment will take
• Tell your GP if there are things you think might help you

Ask and get clarity

• Don’t be afraid to ask questions or get your GP to repeat things. Medical visits can be overwhelming and sometimes even the most well-meaning doctor can present too much information too quickly and in complex terms. You should feel comfortable asking as many of them as you need to understand what they are saying.
• Ask your doctor to clarify what they’re saying in plain language if they’re talking in medical-speak. It’s perfectly fine to say, ‘Sorry, I’m just not following you. Can you explain that in another way?’”
• Next, repeat the information back to your doctor. This will help you absorb it, and it will also help the doctor know whether you understood. It’s perfectly natural to not understand everything?
• Be sure your doctor has understood what you told him or her. For example, if you talk about a concern and your doctor brushes it off, don’t be afraid to
• Ask them to write down anything you don’t understand and make notes during the appointment if you need to
• If your doctor recommends a treatment, share your worries about possible side effects or questions about other options. A critical part of the conversation is saying to the doctor, ‘I understand that all treatments have risks and benefits. Can you help me compare these to other treatments?
• Make sure you fully understand what the next steps are before you leave the room

Based on what you say, your GP might make a diagnosis and/or refer you to another service and they might also prescribe you medication. They should explain what it’s for as well as the risks and benefits so you can decide whether or not to take it. In this case, they will usually make a follow-up appointment. You can make an earlier appointment if things aren’t getting better.

Confidentiality and impartiality

GP appointments involve talking about a wide range of personal information. They won’t judge you for your concerns. Everything you tell your GP is confidential unless they think you’re at risk of seriously harming yourself or someone else or they might need to talk to another health professional so they can make a proper assessment. The GP will record this on your medical notes, which will be kept confidential. This means they should not pass them on to anyone else unless:

• you agree,
• It is reasonable to, or
• it is necessary to.
• You can ask to see a copy of your medical notes.

Unhappy with your GP?

If you’re unhappy with how your appointment went or unsure about the advice, you can ask for a second opinion from another GP or a specialist. You can make an appointment with another GP at your practice or change the practice altogether if they refuse to arrange a second opinion.

How can I find a GP?

You must be registered with a local practice to make an appointment. You can call, email or visit a local practice to see if you can join. It’s free to register. To find local GP practices:

• in England, use the NHS online service search tool
• in Wales, visit NHS 111 Wales
• in Scotland, visit NHS Inform
• in Northern Ireland, visit NI Direct

You usually need to be in a surgery’s catchment area i.e. the local area that the surgery covers.GP surgeries can take patients from outside their area, but they don’t have to. Registering with a GP surgery outside your area may mean you can’t get home visits, or other community services, including physiotherapy and midwife appointments.

If you don’t have a GP but need to see one urgently you can:

• go to an NHS urgent treatment centre if there is one in your area or A&E at your nearest hospital
• speak to your local GP for surgery. They can usually give you treatment for up to 14 days.

Tests and investigations (descriptions)- diagnosing brain tumours and ruling out other conditions

If your doctor suspects you may have a brain tumour, you will undergo further investigations. You may be referred to a neurologist, a doctor specialising in the brain and central nervous system. You may also undergo some diagnostic scans, such as a CT and/or MRI scan, which provide a 3D image of your brain. Following these, you may have a biopsy of your tumour, to determine which type and grade of tumour you have.

To obtain further information about the genetics of your tumour, you may be offered a biomarker screening test. In addition to aiding diagnosis, biomarker tests give an indication as to how fast your tumour may grow and how well you may respond to certain treatments

Getting and understanding your results

Visit our newly diagnosed with a brain tumour page.

You might feel relief at having an answer but you and your family might also feel shock, fear, relief, worry and overwhelm.

It is very important to look after your physical and mental health at this time. See these resources for ideas on how to look after your health and well-being.

Call our support line

To access our support services, call our Support Co-ordinator today on 01454 422 701 or email support@braintumoursupport.co.uk.
Our Support Co-ordinator is available Monday to Friday, 9 am to 5 pm. Our services are free and confidential. We're here to listen and support you through your journey.

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