Knowledge is power
Feeling nervous about your treatment? It’s totally natural. But many young people find it helps to know what to expect, and on this page you can learn about who’ll be involved in your treatment and what it might be like. Talking things through with friends or family can make you feel better too. And if you’ve got other ideas about things that might make treatment easier – like listening to music – just let your doctors and nurses know. It’s your treatment, so you’re the boss.
Will it hurt?
It’s probably one of the big questions on your mind. And the short answer, unfortunately, is that some of your treatments – or the side effects of those treatments – might hurt. Painkillers will make a big difference, so make sure you tell your doctors and nurses if you have any pain. It’s the only way they’ll know, and painkillers can really help you to keep doing the things you enjoy.
Pain can be caused by:
- Tests like biopsies, lumbar punctures and bone marrow tests, which are used to find out what cancer you have and to see how your treatment is going. You’ll have an anaesthetic or painkillers before having any of these – and you can always talk to your doctor or nurse if you’re worried about pain.
- Treatments including chemo – which can sometimes cause side effects like mouth sores, constipation and joint pain – and surgery, which can cause pain once the anaesthetic has worn off.
- Tumours, if they press on your bones, nerves, spinal cord or organs – although treatment should reduce this pain.
You’ll be treated by a team of experts who specialise in different areas of cancer treatment. Your team might include:
- A clinical nurse specialist (CNS) – An expert nurse who focuses on cancer treatment.
- A consultant oncologist, clinical oncologist or haematologist – Cancer specialists who will help to plan your treatment and can give you chemotherapy, radiotherapy and other treatments.
- A palliative care doctor – Whose job it is to relieve your cancer symptoms and help you manage pain.
- A pathologist – A doctor who studies body tissues to find cancer and other diseases.
- A radiologist – An expert at reading X-rays and other scans.
- A surgeon – If you need surgery to treat your cancer.
You might also have other experts on your team, including physiotherapists and occupational therapists (who can help with physical problems and movement), radiographers (who give radiotherapy treatment), specialists in psychological health (who can help with difficult emotions, relationships, making decisions and thinking about the future), dieticians, speech therapists, social workers and pharmacists.
What’s that test?
- 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, which 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, which 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, which 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, which 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, which 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, which can be used to show changes in tissues and in breasts, lungs and other parts of your body.
What's that thing?
During your treatment, you might need drugs, nutrients and other fluids to be put into your body, and you’ll probably need blood to be taken for testing, too. To stop you having lots of separate injections, there are various things doctors might recommend. These include:
- A central line, which involves a small tube being connected to a big vein near your heart (don’t worry – you’ll have an anaesthetic while it’s done) and then run under your skin so it comes out near your breastbone. Smaller tubes, which hang outside your body, are connected to the tube, and all fluids are given to you or taken via these tubes. It might sound a bit scary, but it’s actually a really clever piece of equipment – and a better option than having a lot of different injections.
- A Port/Port-a-cath, which is similar to a central line but completely under your skin. Using a general anaesthetic, a tube is attached to a vein near your heart and connected to a small box, which is implanted under your skin (you’ll be able to feel a small bump where the box is). A special needle is then used to push or pull fluids into that box. Initially you can numb the skin above the box using anaesthetic cream before an injection, but it soon gets very tough, so you won’t feel very much.
- A PICC line, which is a thin tube that’s inserted into your upper arm and connected to a vein near your heart.
You might also have a normal drip attached to your arm during chemotherapy, but this can only be used for a few days.
Whatever is used, it’ll be connected to a pump that gives you the right amount of fluids. It might seem tricky to walk around connected to this at first, but you’ll soon get used to it. And you’ll get used to the beeping noises it makes too. It's a good idea to ask your nurse to explain the silence button to you …