The waiting game
You want answers fast, right? Course you do. Waiting makes you think the worst. But doctors might want you to have several different tests, and you might need to wait for the results. It’s not easy, but it’s important the diagnosis is right – and you can always chat to your doctor or nurse if you’re feeling nervous. It’s important that you’re listened to, so if you don’t think you’re being taken seriously, say so. Only you know what you’re feeling, so don’t be intimidated – you’ve got a right to be heard.
Talking to doctors
It’s normal to feel nervous before speaking to your doctor. Plenty of young people feel awkward discussing their bodies (so do plenty of not-so-young people). And you might feel worried about what you could find out.
It can help to:
- Write down what you want to say and ask beforehand
- Make a note of your symptoms and when you started to feel unwell
- Share as much information as possible – little details can make a big difference
- Take a friend or someone from your family with you
- Be open and honest – remember that doctors talk to people about all kinds of problems all day, every day
- Ask your doctor to repeat anything you don’t understand
- Make sure you know what will happen next before you leave
Conversations with doctors don’t always go to plan. It can be difficult to talk to adults. Plenty of young people have only got good things to say about their GPs. Others say they weren’t taken seriously or could have been diagnosed sooner.
So what’s going on? One problem can be that doctors feel uncomfortable talking to teenagers and young people. And, because cancer is rare in young people, doctors might also be less likely to pick up on the signs straight away.
But it’s vital that you’re listened to and, if necessary, that you’re referred to an expert who can diagnose and treat your cancer.
So if you don’t feel your first appointment goes well, make another one. If that doesn’t go well, make another one again. And if that doesn’t go well, well, you get the idea. You can ask to see another doctor too, if that helps – and don’t worry, doctors won’t be offended if you ask for a second opinion.
Chances are that everything will go smoothly and your doc will listen closely and ask all the right questions, referring you to a cancer expert if necessary. But if that doesn’t happen, remember you have a right to be taken seriously.
There are a lot of tests doctors can use to find out if you have cancer. You can find out which ones are used for which cancers in the Types of Cancer section, but common options include:
- Audiograms: a test used to make sure chemo drugs aren’t affecting your hearing.
- Biopsies: when a small tissue sample is taken from your body so the cells can be studied under a microscope for signs of cancer. You’ll be given pain relief or an anaesthetic before a biopsy.
- Blood tests: these are used to monitor the amount of red blood cells, white blood cells and platelets in your blood, as these can all be affected by cancer. Blood tests can also be used to measure how your liver and kidneys are working, and to show the levels of nutrients in your blood.
- Bone marrow biopsies: when a sample of your bone marrow is taken and tested to monitor the production of blood cells in your body. Bone marrow biopsies are also used to detect leukaemia or lymphoma cells, and can be used to see how you’re responding to treatment. You’re given an anaesthetic or painkillers before a biopsy.
- Bone scans: these show up unusual things going on in your bones much earlier than x-rays. Before a bone scan, you’re given a radioactive fluid through an IV line. This fluid collects anywhere there is a lot of cell activity in your bones – a potential sign of cancer – and then shows up on the scan.
- CT scans: these are also known as CAT scans (CT stands for Computerised Tomography). A CT scan creates detailed cross-sectional pictures of your body from various angles, and can show exactly where a tumour is and how big it is. During a CT scan, you usually lie on your back on a flat bed, while a scanner rotates around you.
- ECGs: a painless test that involves electrical impulses being passed through your body. It’s used if you’re taking certain chemo drugs, so doctors can check your heart is working well. You might also have an echocardiogram test (aka an ECHO) to check the force your heart is pumping with.
- Lumbar punctures: often used to treat leukaemia, a lumbar puncture involves fluid being taken from your spine so it can be tested for cancer cells or infection. Chemotherapy is also sometimes given to you through a lumbar puncture needle and into the fluid around your brain and spinal cord – this is called intrathecal chemotherapy. You’ll have an anaesthetic or painkillers before a lumbar puncture.
- MRI scans: these create cross-sectional pictures of your body and show some types of tumours. During an MRI (which stands for Magnetic Resonance Imaging), you need to lie still on a flat bed inside a large tube. It can be noisy, but you’ll be able to talk to the radiographer who is controlling the scanner.
- PET scans: these produce detailed 3D images of the inside of your body and can show if lumps are cancerous, whether cancer has spread, and if cancer treatment is working. PET stands for Positron Emission Tomography. Before you have a PET scan, you’ll be given a radioactive substance which then spreads through your body. During the scan, this substance shows up any possible problems.
- X-rays: these can be used to show changes in tissues and in breasts, lungs and other parts of your body.
Your info and the cancer registry
When you are diagnosed with cancer, some information about you is collected in a national database called the cancer registry.
Your hospital passes on your information automatically, unless you ask them not to.
The NHS and other organisations use this information for your care, or for health and social care planning or research.
Like all medical records, there are strict rules to keep the information safe and secure.
Talk to your care team if you’ve got any questions about the registry, or follow the link below for the country where you live.
If you want to opt out, you need to contact the registry in your country of the UK. Your care team can give you details about how to do this.