Communication with your healthcare team

Learning to communicate effectively with your healthcare team and keeping yourself informed of what to expect after cancer treatment, will help you through this next stage. It will also ensure you make the best healthcare choices for your needs.

Now that your treatment is over, you will find yourself in a period of transition. During your cancer treatment the priority will have been on getting rid of the disease and you probably focused your thoughts on just getting through it all. You may have looked forward to when your days would not consist of treatment sessions and coping with the after affects and you could get back to everyday life without the disruption of the hospital visits. However, the end of your treatment will probably not have brought an end to your medical needs. You will still need to meet with your medical team for a number of reasons, including investigating the effectiveness of your cancer treatment, managing the short-term side-effects of it and monitoring for recurrence and any long-term health effects. The frequency and duration of your follow-up care will vary depending on factors such as disease site and the protocol of your local health board. The specifics of follow-up care can vary, so it is important you feel familiar and comfortable with your personal follow-up plan. You might have been told about your plan at your last treatment session but if you weren’t, or are uncertain about it, don’t feel that you can’t ask questions about it now. The best approach is to phone your clinic and clarify the following:

- The frequency of your follow-up appointments
- How long you will be followed-up by your specialists
- What you can expect at each appointment (e.g. scans, blood work,self-report of any problems you’ve been experiencing)
- If other health issues you may have (e.g. diabetes, elevated cholesterol) will be addressed or if you are expected to return to your GP for these concerns

Your follow-up schedule will have been determined by your healthcare team.

You may find you can’t attend your six month follow-up appointment exactly when it has been planned, due to a family commitment or a holiday, but there is no reason why you shouldn’t phone the clinic to arrange to be seen a little earlier, even if it has only been five months. Developing your ability to openly and honestly communicate your needs to your healthcare team will build your confidence, and directly help them provide you with the best and most appropriate care. Make the most of your appointments. Once you have your appointments in place, the following tips may help to facilitate good communication with your healthcare team.

Before your appointment

Write down any questions you have and list them in order of importance. Take a note of any symptoms or concerns. If the symptoms are not present at the very moment of your appointment it can be easy to feel they are not worthy of mentioning. However, even problems that come and go should be noted. Your healthcare team will find it helpful if you can be specific about:

- - How long these symptoms have been bothering you
  - What helps or makes the symptoms worse
  - If the symptoms are interfering with your ability to do things (e.g. shopping, work, bathing).

Let your clinic know if you anticipate needing more time. If you know you have a number of concerns or will require longer than usual with your doctor, inform your clinic when you make the appointment. They may be able to give you an extended appointment time.

During your appointment

Ask for clarification:

- - Doctors train for many years in order to develop an understanding of complicated medical terminology. It is entirely reasonable for you to ask them to repeat what they have said, explain it in more detail, phrase it differently, or even draw a picture. Don’t be afraid to keep asking until you understand.
  - Bring someone with you. A partner, friend or relative can help you remember some of the important information that is discussed during your appointment. They can also help keep you on track with getting your questions or concerns addressed
  - Explain your communication preferences. Maybe you prefer written materials to mark up or annotate, or perhaps you like to just discuss things thoroughly. Would a picture or diagram help you to fully understand?

Do you want to know every detail, or do you prefer to know just enough to make the next decision? Letting your doctor know how you tend to take in information and what works best for you, will help them meet your needs.

After your appointment

Stay organised.

- - If you took notes, or received any written materials during your appointment, organise them in a folder
  - Put your next appointment in a diary
  - If you were prescribed any new medications or doses write them down This information is particularly useful if you are also seeing your GP or another medical professional. Knowing what decisions have been made with your oncology team will help guide them with providing care for you
  - Seek clarification

Once the information from your appointment has settled a bit, you may realise you have more questions or concerns. Phone your health clinic and ask for clarification. You may feel your medical team does not have time to address your questions but they will understand your need to be fully informed and know that this will benefit everyone involved.

Our thanks to Maggie’s Centre, Oxford for their help preparing this information.