Follow-up care

Friday 29 January, 2010

Reviewed: A/P Michael Jefford MBBS, MPH, MHlthsevMt, PhD, MRACMA, FRACP, Consultant Medical Oncologist, Peter Mac; Dr. Carrie Lethborg, MSW, PhD, St. Vincent's Hospital

On this page: Why do I need regular check-ups? | What happens during check-ups? | How often should I have check-ups? | Who'll manage my long-term side effects? | The first check-up, including questions to ask your doctor | Coping with anxiety before your check-ups | Finding out more | Is follow-up always necessary?

Better treatments mean that more people are living much longer after cancer treatment. For example, 87% of women with  breast cancer will be alive five years after their cancer treatment. Twenty years ago, only 74% of women with breast cancer were alive five years after their treatment.

Doctors are aware that many cancer survivors need a lot of support and long-term care. But they are still researching the best way to provide this. Research is needed to find out: 

  • how often and why some survivors have late effects from treatment
  • ways of controlling and treating long-term side effects and side effects that occur after treatment.
  • ways to improve the quality of life of cancer survivors and those close to them.

When your treatment finished, your doctor probably told you that you'd need regular check-ups. You may need check-ups for several years, depending on the type of cancer you had.

You may have mixed feelings about this. Follow-up appointments may make you feel anxious, especially in the couple of weeks before they're due. You may keep having thoughts about your cancer coming back, or that your doctor will find a different (new) cancer. This can be very frightening.

It's important that you get the follow-up care you need. Immediately after treatment finishes, many cancer survivors feel very isolated or abandoned. You may not know what's going on or even who to contact if you need help.

At your first check-up, ask your doctor what to expect from your follow-up care. Ask them who you should contact if you're worried. Get phone numbers and times when it's best to contact them.

Some research suggests that there's a difference between what cancer survivors and doctors expect from follow-up meetings. Your doctor may ask you about things that are not worrying you at all, but not ask you about things that are concerning you. Feel free to talk with your doctor about your concerns.

Why do I need regular check-ups?

You may not understand what check-ups mean or why you need them. Everyone's different and follow-up care will vary depending on:

  • the type of cancer you had
  • the type of treatment you had
  • any side effects you may have.

Regular check-ups allow your doctor to keep an eye on your health and wellbeing. Doctors will also be looking for any signs that your cancer might have come back. Your doctor will use the check-ups to:

  • see how you're recovering
  • check how you're feeling and coping with rebuilding your life
  • ask if you have any concerns
  • keep an eye on any long-term side effects and help to treat or control them
  • check if you have had any new symptoms.

Symptoms can be caused by other illnesses, a lot of them much less serious than cancer. So try not to worry too much that every symptom you have means your cancer's coming back. This isn't always easy to do but in time most people do become less worried. Always check with your doctor if your symptoms persist.

What happens during check-ups?

Your doctor will examine you and ask you how you've been feeling. Don't be afraid to tell the truth. For example, if you feel very low in mood, say so. Tell them about any symptoms bothering you.

You may need to have a blood test, an X-ray or scan. 

How often should I have check-ups?

Most people will see their doctor every 3 to 4 months for 2 to 3 years after their treatment ends. As time goes on, and assuming that you stay well, check-ups will become less frequent. After a couple of years you may have 6-monthly or yearly checks until you reach five or 10 years after your original diagnosis. It depends on the type of cancer and treatment that you had.

There are national guidelines for follow-up care for a few types of cancers (for example, breast and bowel cancer). Call our Cancer Council Helpline on 13 11 20 for details on these guidelines.

Remember, if you're worried or notice any new symptoms between appointments, let your doctor know. Don't worry and wait until the next time you are due to see your doctor.

Who'll manage my long-term side effects?

Many cancer treatments don't appear to cause long-term problems. But some do. If you have side effects that will need treatment or care, you need to discuss this with your doctor. Ask whether you should see your specialist or your GP.

You may need help from another health care worker such as a physiotherapist, dietician or specialist nurse. Your specialist may suggest that your GP coordinate your care, but your specialist will also see you if needed. 

Some people have treatment-related problems a few years down the track. For example, if you have early menopause because your ovaries were removed as part of your breast cancer treatment, you could be at risk of osteoporosis which thins your bones. Chemotherapy and radiotherapy sometimes cause longer-term side effects. If you have any concerns, ask your doctor for advice.

The first check-up

At your first check-up you're likely to feel quite nervous. It's a good idea to bring someone with you, to help you remember what your doctor says and to prompt you with the questions you want to ask. Write your questions down before you go so you won't forget or feel lost for words.

Tell you doctor exactly how you feel. If you're feeling very tired or down, let them know. You don't have to try to be brave. Your doctor needs to be aware of these things so that they can best plan your care.

If you can't understand what your doctor is saying, ask them to stop and explain things in a simpler way. Don't leave the check-up wondering what they meant. You have the right to find out the things that you want to know. If time is a problem, ask for a longer appointment next time.

If you continue to feel unhappy with the answers you're getting, let your doctor know. Sometimes it just takes a bit of boldness to get doctors to speak in language that all of us understand.

You may find it helpful to ask your doctor some of these questions.

  • What can I do to lower the chance of my cancer coming back?
  • Why do I need check-ups?
  • What happens during check-ups?
  • How often will I need to come for check-ups?
  • Are check-ups effective: do they always show up problems if there are any?
  • What symptoms should I be looking out for?
  • What tests will I have if a check-up shows signs that the cancer may have come back?
  • How long will it be before I can get on with living my life again without always thinking about my cancer?
  • What should I do if I have any new symptoms between check-ups?
  • How long will I have to take the drugs that I am on?
  • Are there any side effects from the drugs that I'm taking?
  • Who will manage my long-term side effects such as pain and fatigue?
  • What other long-term side effects might I have?
  • Is there any treatment for the side effects that I may have?
  • Where can I find out more about my follow-up care?
  • Will my GP be involved in my follow-up care?
  • What can I do to make it easier going back to work and getting back into my social life again?

If you see doctors other than your cancer specialist, tell them about your cancer and its treatment. Ask your cancer specialist(s) to send the other doctors information about your cancer and the treatments you have had. It may affect their decisions about the health problems you are seeing them about. 

You need to also tell other people caring for you such as dentists and dieticians and complementary therapists such as massage therapists and hypnotherapists.

Coping with anxiety before your check-ups

Many cancer survivors say that they begin to feel very anxious before their routine check-ups. Sleeping problems, having bad dreams and feeling more general aches and pains than usual are not uncommon before a check-up. Some people say they suffer from mood swings and poor appetite.

‘You do get nervous and you tell yourself in your mind it's only a check-up and they're not doing it for any reason other than it's just a check-up-but it becomes this mountain. And I use to organise ... so that my scans are on the Monday and I see the doctor on the Wednesday, because I can't handle having to wait for the results any longer.' (Georgina)

There are many reasons why you may feel anxious. The main one for most people is the fear that they'll be told their cancer has come back.

You may also feel anxious because going back to the hospital brings back memories of your treatment, tests and side effects. Just when your life is getting back to normal and you feel in control again, a check-up can make you fearful. It forces you to think about the chance of your cancer coming back and your life being turned upside down again.

Find ways to try to cope with your worries before each check-up. Once you've had a few check-ups and all is okay, you may be less concerned. These tips may also help.

  • Take a close friend or relative with you to your check-up: don't try to deal with it alone. You'll be surprised how much it helps to share your fears. And people close to you want to feel they're helping.
  • Make the day something to look forward to. Plan to do something special after your check-up. Going out for a meal or meeting a friend can add a positive touch to the day.
  • As hard as it may be, try to see your check-ups as positive. Regular check-ups increase your chance of any problems being picked up early, when they're easier to treat.

Most survivors say that it's very hard not to think about their next check-up and wonder what the outcome will be. Should you prepare yourself for the worst or think that all will be well? You are likely to imagine all sorts of outcomes. Everyone's different and will deal with things in their own way. Try to stay calm.

Finding out more

You may want to know more about check-ups, the after effects and the chance of your cancer coming back. You may also be interested in keeping up to date with any new and effective treatments for the type of cancer you had. Your doctor will usually be happy to discuss this at your check-ups.

Is follow-up always necessary?

For most types of cancer, doctors follow up their patients for several years.

Research is underway to try to find out whether follow-up improves survival, should a cancer recur. Doctors need to know:

  • whether survival is improved when a recurrent cancer is found at follow-up, before symptoms occur
  • or whether survival is the same if a recurrent cancer is treated when symptoms occur, without regular follow-up.

Doctors need to find out the best way to follow up cancer survivors. Doctors need to find out the best way to follow up cancer survivors. People often feel reassured by having regular check-ups. Remember that follow-up is not just to detect cancer recurrence.

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