Everyone reacts differently to cancer, and your emotions can change on a daily basis – during treatment and beyond. But whatever you’re feeling – numb, overwhelmed, scared, angry – is 100% natural.
It’ll take time to start getting your head around this. Even when you’ve had treatment for a while you’re bound to still have questions. This section covers some of the main concerns you might have about how you ended up here and what happens next. Other sections explore what to expect as you go through cancer treatment.
When you are scoring this section of your IAM, the questions below should help.
And you can find even more information at the Teenage Cancer Trust website
The big questions answered
The simple – and seriously unfair – truth is that cancer can just happen. You might be worried about things you’ve done, like smoking, drinking, taking drugs, not using sun cream or having unprotected sex. But the chances of these things causing cancer when you’re young are small. Cancer is a lot of things, but it’s not your fault.
Yes. Cancer treatments are improving all the time, and if your doctor tells you you’re in remission, that means you’re no longer showing the signs or symptoms of cancer.
But it’s also true that sometimes cancer can’t be cured. That’s never an easy thought to deal with, but try to remember there is a huge amount of support for you. You don’t have to face cancer alone.
Unfortunately, some treatments – or their side effects – might hurt. Your doctors and nurses can help you deal with pain, but only if you let them know you’re hurting, so don’t try and tough it out.
Whoever you feel comfortable talking to – maybe friends, family, doctors, nurses, your Youth Support Coordinator, a counsellor or a support group. Speaking to people can help you deal with whatever is on your mind.
This one isn’t easy, because everyone’s cancer is different. Treatment could be one operation or it could last for years. It’s really important to understand what’s planned though, so never be afraid to ask.
If you’re feeling stressed or unsure about anything, ask your doctors or nurses. There’s no such thing as a silly question, and you’ve got every right to know what’s going on with your body.
It can help to:
Write down what you want to know before your appointment
Take someone with you
Share as much detail as possible
Write down or record the answers you get
Ask your doctor or nurse to repeat anything you don’t understand.
You might like to ask about:
Your cancer. Which parts of your body are affected and what it will do to you?
Your treatment. What tests and treatments are planned, what’s involved and how will you know if treatment has worked?
Your feelings. How could your emotions be affected and what support is there?
Staying in control. Do you have options about your treatment and how can you be involved in decisions that affect you?
What happens after treatment? What will happen and will there be long-term side effects?
Practical questions. Can you stay in school or work, and do you qualify for financial support?
Types of cancer
There are more than 200 types of cancer, all caused by cells in your body not behaving as they should. Teenage Cancer Trust has lots of useful information about the most common cancers in young people.
Cancer treatment – you’re the boss!
Cancer is treated in lots of different ways – and getting your head around what could happen can feel overwhelming. Remember, though – you can always ask questions.
Maybe you want to delay a round of chemo until after an exam or get friends to visit after hospital opening hours. It may not be possible, but if you don’t ask, you don’t get – so ask away!
The Teenage Cancer Trust website has information and films about the main treatments, including:
You might also hear about complementary therapies. That means things like aromatherapy, art therapy, acupuncture, herbal medicine, massage therapy, meditation, visualisation and yoga. These aren’t meant to cure cancer but that doesn’t mean they won’t make you feel better about yourself. It’s really important to talk to your doctors or nurses before using any of them though.
Tests can become a regular part of your life when you have cancer, and knowing what to expect can ease any worries you might have. Your medical team will always be happy to answer questions, but here are the basics about some of the most common tests.
Audiogram. Some chemotherapy drugs can affect your hearing, so you might have audiogram tests – which don’t hurt – to check for any changes.
Biopsy. A biopsy involves a small tissue sample being taken from your body so it can be studied for signs of cancer. You’re given pain relief or an anaesthetic beforehand.
Blood test. Blood tests are used to monitor the red blood cells, white blood cells and platelets in your blood. Blood can be taken using a needle or special tubes called lines and ports.
Bone marrow biopsy. This involves taking a small sample of your bone marrow – the spongy tissue found in larger bones – to test for signs of cancer. You’re given pain relief or an anaesthetic beforehand, and then a small amount of bone marrow from your pelvis is pulled up into a syringe.
Bone scan. A bone scan can show up unusual things in your bones much earlier than an X-ray. You’ll be a given an injection of a small, harmless amount of radioactive material then scanned a couple of hours later. You need to lie still while a camera moves around you.
CT or CAT scan. Used to create detailed cross-sectional pictures of your body, a CT or CAT scan usually involves lying on a flat bed for between five and ten minutes while a large tube is rotated around you.
Electrocardiogram (ECG). A painless test to check your heart is working well if you’re taking certain chemotherapy drugs, an ECG involves small flat metal discs being attached to your arms, legs and chest to measure electrical signals.
Lumbar puncture. A lumbar puncture is used to check the fluid that circulates around your brain and spinal cord for cancer. Following a local anaesthetic, a doctor or nurse will take the fluid using a hollow needle.
Magnetic Resonance Imaging (MRI). You need to lie completely still on a flat bed inside a large tube-shaped during an MRI scan. It’s used to take cross-sectional pictures of your body and can show some types of tumour. An MRI scan lasts 30-90 minutes and can be noisy, but it doesn’t hurt.
Positron Emission Tomography (PET) scan. Another scan that involves lying on a flat bed in a circular scanner, but a PET scan produces detailed 3D images. You’ll be given a radioactive tracer substance by injection or by breathing in a gas before a PET scan.
X-rays. These are used during cancer treatment to see tumours, bones and changes to organs and tissues. They don’t hurt and use small amounts of radiation to take pictures of the inside of your body.
Unfortunately, some treatments – or their side effects – might hurt. So make sure you mention any pain to your doctors and nurses. No one will think any less of you, and painkillers can make it easier to keep doing the things you enjoy.
Some chemo drugs can make you feel rough. Let your doctors know if you do feel sick – they can give you medicines to help. In general, try to eat small, frequent meals whenever you feel best, relax after eating, get plenty of fresh air, and avoid strong smelling foods and your favourite foods (they won’t be your favourite foods for long if you eat them when you’re not feeling great).
Some treatments – especially chemotherapy – can leave you feeling wiped out. This can be frustrating but try and be patient. Take time to recover. Eat well. Sleep often. Don’t overdo it. And try to stay active – sometimes even a walk can help you feel more awake.
You might get mouth ulcers or have a sore mouth and/or throat during chemo. Sucking on red ice pops relieves pain (but only the red ones – citric acid in yellow and orange ones can make your mouth worse). So does avoiding crunchy food and very hot food or drinks, and a children’s toothbrush can also make it easier to brush your teeth.
Even if you’re expecting it, losing your hair can be a shock. It can happen during chemotherapy and radiotherapy (though it doesn’t happen to everyone). You might find it helps to experiment with shorter hairstyles, treat yourself to scarves and hats, speak to other young people through a support group, or show the world that bald is beautiful. Someone in your care team (for example your Youth Support Coordinator) should be able to let you know about great projects that can provide wigs for you.
If treatment is making you feel sick or affecting your appetite so you struggle to eat, speak to your care team. They might put you in touch with a dietician who can help. Also try to eat small, frequent meals, cut food up small, eat with other people to take your mind off food and keep a sick bag nearby, just in case. High-calorie foods (cheese, milkshakes, ice cream), energy drinks and protein-rich foods (beans, eggs, fish, meat) can also help.
Some treatments – particularly steroids – can cause you to put on weight. This is usually temporary, and it’s really important you don’t avoid eating to try and stop putting weight on. Try to focus on eating healthily, filling up on fruit and veg, drinking lots of water and being active when you can. Wearing clothes you feel comfortable in and talking about how you feel can help too. You’ll be able to think about losing any weight once treatment is done.
Chemo brain/brain fog
These aren’t medical terms, but some people say during chemo they get spaced out, struggle to concentrate or find it hard to think clearly. If you feel like this, keep yourself safe – no driving. Putting reminders in your phone or a diary can help. Symptoms tend to improve after chemo, but talk to your care team if you’re worried.
You’ll be treated by a team of experts who specialise in different areas of cancer treatment. It can be handy to keep a list of everyone’s names, so you know who’s who. Your team might include a:
Clinical nurse specialist – an expert nurse who focuses on cancer treatment
Consultant – a specialist doctor who is an expert in particular areas of medicine
Dietician – an expert who can review you diet and help you plan what to eat
General Practitioner (GP) – your normal doctor, who’ll you probably be in touch with throughout treatment
Palliative care team – the people whose job it is to relieve cancer symptoms, help you manage pain and help you deal with the emotional impact of cancer
Pathologist – a doctor who studies body tissues to look for signs of cancer and other diseases
Pharmacist – an expert in the medicines used to treat cancer
Phlebotomist – a specialist in taking blood
Physiotherapist and/or occupational therapist – an expert in helping with physical problems and movements
Psychologist and/or counsellor – trained professionals who can help you deal with difficult emotions and mental health
Radiologist – An expert at reading scans and x-rays
Radiotherapist and radiographer – Experts who give radiotherapy treatment and control the machines used for scans
Social worker – A trained professional who can help you and your family adjust to life during and after cancer treatment
Speech and language therapist – An expert who can help you talk and communicate
Surgeon – A specialist cancer surgeon who will be in charge during operations
Youth Support Coordinators and activity coordinator – Funded by Teenage Cancer Trust, they provide emotional support and help you relax in and out of hospital.
There’s a good chance during treatment you’ll need various drugs straight into your bloodstream. Instead of having lots of injections, you’ll usually have an intravenous (IV) line inserted instead. There are several different ones.
A Hickman line involves a small tube being put into a big vein near your heart and then run under you skin so it comes out under your breastbone. (You have an anaesthetic while it’s fitted.) Drugs are then given to you in smaller tubes attached to the tube near your breastbone.
A Port/Port-a-cath is similar to a Hickman line, but the tube used to give you drugs is under your skin. A special needle is used to give you drugs through the tube.
A PICC line is a thin tube that’s inserted into your upper arm and passed into a vein near your heart.
A cannula is a small tube that’s put into a vein in your hand or arm. It can only stay in for a few days.
Clinical trials are the final stage of testing new drugs, therapies and treatments. If you’re given the chance to take part in one, talk it through carefully with your doctors.
It’s important to remember that the treatments you are given during a trial may or may not be better than existing treatments. All trials are designed to be as safe as possible and it’s completely up to you whether you want to get involved.
Staying in hospital
You’ll probably need to get used to regular hospital stays when you start treatment. What to expect depends a lot on where you are – on a ward with people your age, in a Teenage Cancer Trust unit, or on a ward with younger or older people.
Wherever you are, you’ll get asked a lot of questions overnight, so the staff can help you settle in. If you’re asked about things you’d rather your family didn’t know – like your sexual history – you can always ask to talk to doctors or nurses privately.
On a ward, you and your family are guaranteed constant support. It can take a while to get used to everything, and there might be days when you wish you had a bit more privacy, but you can always try taking a walk if you can or reaching for your headphones. And try not to compare yourself with anyone else – everyone’s situation is different.
Staying in hospital can get pretty dull, but you could always:
Make the place your own with photos and decorations
Make a visitors book
Let people know if you’d like a visit
Chat to staff
Catch up on box sets, magazines, books – get your friends to lend you theirs
Listen to audiobooks
Get creative with a blog, pictures or poetry
Learn something – crosswords, sign language, knitting, anything!
Find out what activities are going on in your ward.
Even if you’ve spent a lot of time wishing you could leave hospital, it can still be scary when the day arrives. It could help to:
Pin the hospital phone number and your clinical nurse specialist’s number somewhere at home and add them to your contacts
Ask your nurse specialist if they can visit you at home. It might not be possible, but it’s worth checking
Let your family know what you’d like them to do and what you want to do yourself
Have a plan so everyone knows what to do if you’re not well.
Where will I be treated?
If you’re under 16, you’ll be treated on a children’s ward (or possibly on a young people’s unit if you’re over 13)
If you’re 16-18, you’re most likely to be treated at a Principal Treatment Centre (PTC) for young people
If you’re 19 to 24, you should have the option to be treated at a young people’s PTC or a hospital that has been approved to provide cancer care for young adults.
There might be a time when you need to move from services designed for children or young people to adult services.