Most people don’t have that much experience with hospitals, apart from a routine appointment or trip to A&E. It can sometimes feel like a different world where time is suspended, your life is in someone else’s hands, and there is a bewildering array of long, beige corridors.
It can be especially difficult to navigate this confusing world as a teenager or young adult with cancer. Knowing how to get your questions answered, and to make sense of what is happening around you, takes a bit of experience.
Whilst I do not have cancer, I have a lifelong genetic condition called cystic fibrosis, and have been in and out of hospitals my entire life. I’ve had over 200 clinic appointments and spent many months in hospitals in total. So, I’ve developed a few tips for Teenage and Young Adult Cancer Awareness Month that might help young people navigate hospital, something I found particularly difficult when I transitioned to adult care aged 17.
1. You have the right to a second opinion.
Doctors must respect your right to seek a second opinion. This means you can ask to see another GP or consultant if you don’t feel happy with your diagnosis, treatment or care. Your first port of call should always be to talk about your concerns with your doctor, but it can be reassuring to know you have other options if you need them.
Your treatment plan will likely be discussed at the multi-disciplinary team (MDT) meeting in the main hospital where you were diagnosed. In most cases, there will be other consultants on the team as well and you could ask to see one of them.
If you would like your case discussed in another hospital, you should ask your consultant to refer you for a second opinion. Most consultants in other hospitals will want to review your scans and sometimes the biopsies themselves in their own MDT meeting before seeing you for a second opinion themselves.
Your consultant themselves may ask the MDT in another main hospital or sometimes colleagues abroad for their opinion in some cases. They should, of course, ask your permission to do this. You can also ask your doctor the reasons behind their decision-making such as why they aren’t referring you for a specific test or why they don’t agree with your assessment of a situation. By asking them directly, you can talk through your concerns with them to help you understand why they have made a particular decision and feel reassured that they have thought of everything. If you are not happy with their answers, you can ask to speak to another member of the medical team such as a consultant.
2. Make a list of your questions or symptoms before an appointment.
Appointments can be a whirlwind. You might see lots of different people (such as dietitians, research nurses, and pharmacists), or you might just see your consultant or registrar. The people you see are often busy, and this means appointments can feel quite business-like and not offer too many opportunities for discussion. However, it’s your health and your care – you deserve to understand that information and ask your questions.
The best way to make sure you don’t get overwhelmed is to make a list of questions, or symptoms, before your appointment. The act of writing down what you want to know or discuss can be a huge help, as it clarifies goals in your mind. Also, having the list to refer to in the appointment is very helpful. You can work through it, point by point.
Don’t be afraid to ask questions twice if you didn’t understand, and don’t worry about looking silly. One of the key things that helps is to think of your relationship with people at the hospital. They are there to help you, and they are all only human. This means you are absolutely allowed to speak up and ask questions if something doesn’t seem right, if you think there might be a mistake, or if they haven’t explained something properly.
3. Think ahead about how to describe symptoms and what your doctors need to know.
Remember that your doctor and care team may not be used to talking to teenagers and young adults if you are not being treated by a team who specifically looks after young patients. They might not use the same types of language as you would.
It can be helpful to remove the communication barrier by thinking about how you talk about your symptoms or issues. For example, instead of saying something like ‘I can’t keep up with my mates’, try adding details like ‘When I’m playing football with my friends, I get breathless after 5 minutes and have to sit down to recover’.
If you’re talking about symptoms, doctors want to know:
- How bad the symptom is.
- How often it happens.
- How long it lasts.
- When it happens.
- What impact it has on your life.
You can also try keeping a diary and writing down your symptoms as they happen. This can be especially useful if you feel like your concerns are being dismissed. It is amazing the power of pulling out a detailed diary of every time you had certain symptoms to get people to sit up and take notice. It is no longer you saying, ‘this seems to happen a lot’, which depends on your opinion of how much a ‘lot’ is, but provides evidence that this is a recurring problem that is not going away.
4. Take notes after appointments.
This can be very useful, for several reasons. Firstly, it can help you figure out when certain symptoms started, or what changes have happened. It also reminds you what was discussed last time, so you can plan what you want to talk about next time.
I’d suggest taking notes after appointments as early on as possible – even initial GP appointments. It can help you demonstrate if you are not being listened to, and remind you what steps they said would be taken so that you can chase them later on. It might feel like you’ll remember everything, but if you are waiting months for a referral it is easy to forget the details.
When you’re being looked after by a cancer team, they will send regular letters to update your GP about your health. You are entitled to ask for these to be sent to you too as a matter of course. You are also entitled to any records about you – some hospitals use online services where you can see all your test results, so make sure to ask if you would find this helpful.
5. Learn about your cancer and treatment.
If you have already been diagnosed with a particular type of cancer, you may want to learn more about your diagnosis. You will need to think about whether you feel confident to do this as there is a huge amount of information out there which might be upsetting. It’s recommended not to Google or WebMD things, as you will likely end up in a stressful rabbit hole that may not be relevant to you.
We produce a range of leaflets and factsheets, for teenagers and young adults such as our ‘Radiotherapy’ and ‘Taking part in research’ booklets.
Reputable charities can give you unbiased patient focused information. You can also ask your care team to recommend places to find information that is appropriate for you. It is okay if you don’t want to know all the details, but it might help you understand how best to communicate your symptoms and issues with your care team. Everyone handles things differently.
6. Don’t be afraid to ring up and ask questions.
If you have been referred for tests, appointments with specialists, or are waiting on results – do chase them! If you know which hospital and department you’ve been referred to, you can usually find a number online, or ring the hospital switchboard. You can ask whether your referral has been accepted, what the wait list is like, and whether your results have come back.
Even if you don’t get any specific answers, it can help your peace of mind to know what stage something is at. Knowing your results are back can be helpful whilst you wait for more news. Similarly, knowing your referral has been accepted can feel like some progress has been made, which can be sorely needed.
7. Take someone with you if you want support.
You shouldn’t have to take someone with you to appointments if you don’t want to. Your doctor should be listening to you, no matter your age, but this is not always the case. Parents might sometimes be listened to more than the patient. It can be difficult, but you have every right to push for them to talk to you and to listen to you.
However, it can be useful to take someone with you to an appointment. Taking a parent also doesn’t mean that you are not independent – many older adults would want someone with them too. You can take anyone you feel comfortable with, like your partner or a close friend. It’s your appointment and your choice on what makes you feel the most comfortable.
A way that companions can help is by taking notes, so you can give the appointment your full attention. They can also help you process things later, and pick out the nuances from the conversation. It can be hard to take everything in, so having someone you can debrief, or even have a bit of a rant with if things aren’t going well, can be really helpful. Plus, they can be good moral support, and help you get home safely afterwards.
8. Be calm and pick your battles.
There’s no getting past the fact that appointments can be emotional, especially if you are trying to get help and feel as though no one is listening to you. However, it is important to stay calm and logical while sticking to the facts. Doctors may find it difficult to uncover the heart of the issue if you are too upset to talk or too frustrated to get your point fully across. While difficult, staying calm might help you get listened to faster.
Cancer and its treatment has a huge impact on your day-to-day life. You will have to make sacrifices, and no one expects you to be happy about it. Whilst it can be difficult to hand over control of your life, and you might want to rebel about everything, it’s important to pick your battles. If you fight your care team about every hospital admission, or every test, you will have a harder time getting them to listen when there is something that is really important to you. For example, maybe it’s not too important if you miss a project at school but missing your school prom might be devastating. Work out what is important to you and why, and make sure you can explain that clearly to your team.
I will leave you with two last pieces of advice for getting through hospital life. Firstly, be kind to yourself. You are navigating a new and sometimes scary world. So don’t beat yourself up about a question you forgot to ask, or a detail you don’t quite remember. You can always get in contact with your team or ask them in the future. You’ve got enough going on, with life and with cancer, so don’t add judging yourself to the pile.
Lastly, always take something to occupy yourself with such as a book or fully-charged phone! It doesn’t matter if you think you’re just nipping off the ward for an x-ray, making sure you have something to do will make a world of difference in waiting rooms, and save your sanity.
Read next: Are young people with cancer different from other cancer patients?
Ellie Ellicott is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters.
You can find Ellie on X: @EllieW_CCLG