When to contact your healthcare team after treatment

After finishing cancer treatment, it may take time to find out what feels normal for you. You may worry that every ache and pain is linked to the cancer. Try not to be anxious. Your healthcare team will tell you which signs and symptoms to look out for.

After treatment finishes, it can feel strange not seeing your healthcare team as often. You may feel you have less chance to talk about concerns. And you might put off asking questions you think aren’t serious enough.

Your cancer doctors or nurses are usually still available for questions. You can get in touch if there’s something worrying you between appointments. It’s really important, even after treatment, to follow the advice of your healthcare team. Make sure any information you get is from a reliable source.

You may feel nervous going for follow-up appointments or tests but you may feel better afterwards. And if the cancer does come back, regular follow-up visits and tests can help to find it early.

What to look out for

After treatment, it’s common to worry that every ache and pain is linked to the cancer. You’ll also still be getting used to what now feels normal. This makes it harder to know what to pay attention to and what to ignore.

Always let your doctor or nurse know if you have:

  • any new or unusual symptoms that don’t go away
  • symptoms or side effects that don’t improve over time
  • symptoms similar to ones you had when you were first diagnosed
  • general symptoms, for example losing weight, going off your food or feeling more tired than usual, for no obvious reasons.

Remember that you can get in touch with your cancer doctor or nurse in between appointments. They can reassure you or explain if your symptoms are likely to be linked to your treatment. They can also do some tests if needed.

You may not always be able to speak to your cancer team when you need to. It may help to contact the Macmillan Support Line on 0808 808 00 00 and talk to one of our cancer support specialists

You may feel you don’t want to be a nuisance by mentioning symptoms you think seem minor. But by not mentioning them you’ll continue to worry, so it’s always better to get them checked. Knowing the side effects of any ongoing treatment and any possible late treatment effects can help.

There may be certain symptoms linked with your type of cancer coming back. You can ask your doctor or nurse about these. This may help you to know what to look out for and stop you worrying unnecessarily.

Checking yourself for symptoms can be a good way of noticing a cancer that comes back. However, for some people, checking themselves can become their main focus and take up most of their time. This is unhelpful and can cause them to worry more and feel very anxious. Focusing on other aspects of well-being may be more helpful.

Follow the advice from your medical staff

Your cancer team may give you advice on what you can do and what to look out for after your treatment finishes. You may have ongoing side effects that you need to manage. Or your nurse may have shown you how to do some simple checks and explained how to recognise anything unusual.

This might seem like too much to deal with after going through your treatment and you might just want to have a break from it all. But it’s important to follow the advice from your cancer team and make it part of your routine. Getting to know what is normal for you now can help you feel more in control.

If your doctor has prescribed drugs – for example, hormonal therapy – to help reduce the risk of the cancer coming back, it’s very important to keep taking them. Not taking your treatment can increase the risk of the cancer coming back.

If you have troublesome side effects always let your cancer nurse or doctor know. They can often help with these or if necessary change you to a different drug.

Follow-up visits and tests

You may find going back to the hospital for follow-up visits or tests difficult. It’s normal to want to avoid situations that make you feel anxious or bring back difficult feelings. But many people feel reassured after follow-up visits.

Going for your visits and tests is an important part of looking after yourself. Your doctors can check whether there are any signs that the cancer has come back (recurrence) or has spread. Your cancer team also need to know if you have any side effects or symptoms, and how you’re coping emotionally.

If cancer comes back, finding it early can make it easier to treat and treatment may work better. In some cancers, treatment may cure a recurrence.

You might find going to appointments or tests easier if you:

  • have someone with you and let them know how you’re feeling
  • have something to distract you while you’re waiting, such as music or a book
  • write a list beforehand of what you want to talk about with your cancer team
  • plan something enjoyable to do afterwards.

Having fewer hospital visits may make some people less anxious and help them move on after treatment. Instead of routine appointments, some people are asked to contact their nurse specialist or cancer doctor if they have any symptoms or concerns. If necessary, they will be seen urgently. This is sometimes called supported self-management or patient-triggered follow-up. It means you are more in control of your care.

Before your treatment finishes, your nurse will explain what will happen after treatment ends. They may tell you about symptoms to look out for, and what you can do to help your recovery. You will still have any regular tests or scans that you need.

Getting the most from your visit

When you feel anxious, it can be difficult to take in what your doctor or nurse is saying. As well as having your list of questions, you can write notes on what happened and what was said during your visit. If someone goes with you, they can help you by going over what was said later. You can also ask your doctor if you can record your conversation so you can listen to it afterwards.

If you’re unsure of anything, ask your doctor to explain it in simple, clear language. Otherwise you may worry afterwards about what they said.

Tell your doctor or nurse as much as you can about your health and don’t play anything down. Try to be open with them about how you have been feeling emotionally. This way they are in a better position to support you.

Make sense of statistics

Statistics about cancer can be difficult to understand.

Your cancer doctor is the best person to talk to if you want to know more about the chances of the cancer coming back. Doctors may know from trials how many people benefit from a treatment but they can’t predict exactly what will happen to you. They may be able to give you some general guidance based on the stage of the cancer, how it tends to behave and the treatments you’ve had.

Some people try to find this information for themselves. Cancer survival statistics are based on large numbers of people. They help doctors decide which treatments are the most effective overall. But everyone is different so statistics can’t be used to predict what will happen to an individual. There may also be factors that make your situation different from the usual.

Ask your doctor if any statistics you’ve seen seem unclear. It may be best to ask them in the first place so they can give you statistics based on your situation.

Get reliable information

There is a lot of information available on the internet and in print. It is important to make sure any information you read is from a reliable source. A lot of information now has the Information Standard logo on it. This means that the information is based on evidence and is produced according to strict quality control guidelines. You can see the Information Standard logo in the top right-hand corner of the page.

If you’re not sure whether something you’ve read is reliable, check with your doctor or nurse or contact the Macmillan Support Line free on 0808 808 00 00.

Back to Dealing with your emotions

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Managing fear and anxiety

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