Monitoring for late effects in the future

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After treatment is finished, you will need to continue monitoring for late effects. Learn why you need to do this and the importance of continuing to attend regular health-care appointments.

Key points

  • Cancer and treatment can continue to affect your future health, even after treatment finishes.
  • Continue to follow-up with your doctor, self-monitor, live a healthy lifestyle and recognize that you can't change the past.
  • At the end of treatment, you and your famliy can meet with your doctor to discuss your health history and create a written record of treatment so future health-care providers have your full health history.
  • At a follow-up appointment you may have a physical exam, a neurological exam and tests such as scans or blood tests.
  • If you have anxiety related to follow-up appointments or self-monitoring, talk about it with someone you trust or with a professional.

Cancer and treatment can have long-lasting effects on your body that can impact your health in the future. These are called late effects. You may be experiencing some of these effects already, but some may not show up until years into the future.

After all I’ve been through, it doesn’t seem fair!

For many teens, the news that cancer and treatment can affect your health into the future is tough to accept. The good news is that not everyone develops serious late effects, and treatments are constantly improving to reduce these effects.

So what can I do about it?

  • Follow up. Make sure that you complete any of the follow-up tests or attend any follow-up appointments that were recommended by your health-care team.
  • Monitor your health. Practice self-monitoring, and visit your health-care provider regularly for check-ups.
  • Live a healthy lifestyle. Just like everybody else, you can improve your health by treating yourself well. The lifestyle section describes the important parts of a healthy lifestyle.
  • Recognize that you can’t control the past. What’s done is done. You can’t change the cancer or treatments you’ve had, so worrying about decisions or choices you made in the past will only make you feel bad. Focus your energy on looking towards the future.

Regular visits to your health care provider

When you are in remission (free from cancer), you won’t need to see your cancer treatment team anymore. They will transfer your follow-up care over to your family doctor and/or to a cancer follow-up clinic.

Regular and frequent follow-up with your health-care provider will help keep you as healthy as possible, and help identify any health problems early on. When a change is noticed early, there is usually a better chance that you can treat it or prevent it from getting worse.

Right after treatment ends, your follow-up appointments will probably happen fairly often; but they will become less frequent as time passes. Your health-care provider will let you know how often you will need to go for follow-up appointments.

Eventually, you will probably have to go about once a year. If you notice any changes in your health between appointments, be sure to contact your health-care provider as soon as possible.

Cancer treatment records

Having a written record of your cancer treatment is really important. To monitor you properly, your health-care provider will need to know the full history of your cancer and treatment.

Different treatments have different potential late effects. The kind of cancer and treatment you had will influence the tests your doctor will use to monitor your health. Once they know what to look for, your doctor will teach you how to monitor yourself.

At the end of your treatment, you and your family can book an appointment with your doctor to talk about your health history and create a written record. The record should include:

  • your diagnosis
  • where and when you were treated
  • all the types and doses of treatment you received
  • any complications that you experienced
  • specific instructions for monitoring your health in the future, including testing for late effects

This is also a good time to make a MyHealth Passport. This passport is a customized, wallet-size card where you can keep all your medical information. It’s useful to carry around with you in case of an emergency, or in a situation where you may need to explain your health history to a new doctor. You can ask your health-care team for help with the details of your treatment if you are unsure about anything.

A number of templates for cancer treatment records can also be found on the web. One example is provided by Childhood Cancer Guides, a US-based non-profit organization.

What happens during a follow-up appointment?

Appointments will focus on looking at the condition of your body, including checking for signs of late effects from your treatment or of cancer returning. Your doctor will also ask you about your thoughts and emotions. Adjusting to life after cancer can be challenging, and it’s important to be honest about how you are feeling. You will have the chance to ask your own questions too.

Depending on the type of cancer you had, your follow-up appointments may include:

  • a physical exam to check for any changes in your body such as to your hearing, your vision, your heart, or other organs
  • a neurological exam to see how cancer has affected your nervous system (this is less common and will depend on the type of cancer and treatment you had)
  • some tests to monitor your health, such as scans, a bone density test or blood tests. These tests are just examples and not everyone will need them

It’s important to tell the doctor or nurse about any changes you have noticed in your body, your thoughts, or emotions.

Appointments and anxiety

For many people, follow-up appointments, further tests, and waiting for results bring up a lot of anxiety and emotions. You may be surprised by the strength of your reaction. Talk about it with someone you trust.

Sometimes the anxiety and emotions are so strong that you may need support from a professional. Your health-care provider can refer you or can recommend someone to help based on your needs.

Dealing with anxiety is tough, but don’t let it keep you from attending appointments. Your health and your future are too important!

Last updated: September 3rd 2019