When you have experienced cancer, you get to know a lot about your own body and the impacts of treatment. Ongoing impacts that last well beyond the end of treatment are called long term effects. Some impacts may also arise for the first time years later. These are known as late effects.
This topic discusses common long term and late effects, how they can be managed and the important role General Practitioners (GPs) play in these and other aspects of your health and wellbeing after treatment. It also provides practical information about how to find a great GP and make the most of your relationship with them.
LATE AND LONG TERM EFFECTS
Late and long term effects are impacts of cancer and treatment that continue or arise after treatment ends. You may experience many, some or none; it’s different for everyone (even for people identical in terms of age, diagnosis, and treatment).
Some late and long term effects may improve or go away over time, while others may be permanent. The important thing is to know what to look out for and speak up about any problems you do experience, so that they can be managed with support from your healthcare team.
Some common late and long term effects are described below, but remember - they are different for everyone and not everyone experiences them. Talk to your treating team about what may be relevant for you.
Common physical late or long term effects include:
FatigueFatigue is one of the most common effects reported by young people. See the topic on 'Fatigue' for more information and tips on how to deal with it. or feeling really physically or mentally tired a lot of the time, in a way that impacts your life
Pain, swelling, tingling or numbness
Problems with specific organs or body systems (e.g. heart, lungs, thyroid)
Hearing or sight changes
Bone or joint problems
Increased risk of developing another cancer
Impacts to fertilitySee the topic on 'Fertility' for more information if this is an area of worry or concern for you.
Changed sexual drive/functionSee the topic on 'Intimacy & Sex' for more information on managing changes to intimate relationships, sex and sexual function.
Changed weight/eating or nutritional problemsYou might be surprised by how much of an impact good nutrition can have on managing side effects, reducing the risk of other illnesses, and your recovery overall. See the 'Diet & Nutrition' topic for more information.
Sleep disruptionCheck out the topic on 'Fatigue' for tips and tricks on how to improve sleep.
These relate to how your brain works. Many people talk about experiencing ‘chemo brain’ and this is a real thing! People sometimes say it feels like they are in a fog. Common cognitive late and long term effects include problems with:
Remembering things, staying focussed or concentrating
Following instructions, learning information or understanding
Problem solving or generalising
Writing or speaking
Socialising with friends and keeping up with others or life
PSYCHOLOGICAL, EMOTIONAL & SOCIAL
It’s common to feel a range of emotions and experience impacts to your social life when you go through a stressful life event like cancer. While this is normal, if emotionsCheck out the 'Emotional Health & Wellbeing' topic for information and practical strategies on looking after this important aspect of your wellbeing. are hard to handle, it is important to tell someone you trust and ask for help.
Some common emotional and social effects include:
Low mood or depression
Anxiety, excessive worry or panic
Anger, irritability, impatience, frustration or guilt
Emotional fatigue or tiredness
Lack of motivation or loss of confidence
Withdrawal from others or feeling isolated
Not engaging in normal activities (e.g. school/study/work/other things you enjoy)
Changed relationshipsCheck out the 'Relationships' topic for tips and advice on managing changes or challenges in relationships after cancer. with family, partners or friends
MANAGING LATE AND LONG TERM EFFECTS
Adjusting to life after treatment can be challenging, particularly if you’re experiencing any ongoing impacts. It can feel like you’ll never be able to put it behind you.
Whether you are currently dealing with ongoing side effects or concerned about the possibility of late effects, below are some tips for taking control of your health and wellbeing now and into the future:
Ask your treating team what (if any) late effects are known to be associated with your treatment - knowing what to look out for and identifying problems early on can mean faster and more effective management. Remember that not everyone experiences late effects- even those at risk.
Ask your treating team for a health or treatment summary, which is a record of important information relating to your diagnosis, treatment and follow-up care. Sharing it with any future health professionals you see can help them provide the best care for you
KEEP YOUR FOLLOW-UP APPOINTMENTS
When treatment ends, some young people struggle with having less health-related contact, while others want to distance themselves from hospitals and medical appointments as much as possible. Follow-up care might be the last thing you want to think about, but it’s an important part of making sure that late and long term effects are identified and managed.
Your treating team will have arranged a schedule of follow-up appointments with them and/or your GP. Keep them- it’s about catching and addressing any problems as soon as possible, and making sure you have the health information and support you need to live the life you want.
Many people find the lead-up to these appointments stressful or worrisome, especially if they are waiting on scan or other test results. Check out the topic on ‘Emotional Health & Wellbeing’ for some practical strategies that can help.
Talk to your treating team or GP about any symptoms or concerns you have, big or small - it’s always worth bringing up, be it for advice, action or reassurance.
Write things down as they come up, and don’t feel you have to wait for scheduled appointments - reach out to your healthcare team anytime if something is worrying or bothering you.
Look after yourself - lifestyle choices can be an important part of managing late and long term effects. Avoid smoking and excessive alcohol, use sun protection, exercise regularly, eat plenty of fruit and vegetables and maintain a healthy weight.
DID YOU KNOW?
Exercise has been shown to be one of the best things you can do to help with many late and long term effects. Check out the topic on ‘Exercise & Getting Active’ for more information.
WHAT CAN BE DONE?
Approaches for managing late and long term effects will depend on what exactly you are experiencing, and may include one or more of the following:
strategies relating to exerciseIf exercise was a pill it would be the most widely prescribed and beneficial medication available. It may reduce the risk of developing a number of late and long term effects, and can help treat many chronic physical and mental health conditions. Check out the topic on 'Exercise & Getting Active' for more information., diet and nutritionYou might be surprised by how much of an impact good nutrition can have on managing side effects, reducing the risk of other illnesses, and your recovery overall. See the 'Diet & Nutrition' topic for more information. or emotional wellbeingCheck out the 'Emotional Health & Wellbeing' topic for information on and practical strategies for emotional wellness after treatment.
information and/or referral on to other healthcare professionals
Some people also find that talking to and sharing information with others who have had a cancer experience helps them find new ways to manage challenges.
WHY YOU NEED A GP
GPs are a key component of your healthcare team. They are doctors that specialise in general health, including any issue that affects your physical, mental or social health and wellbeing.
When treatment ends, GPs often become the main doctor to support your ongoing health needs.
Lots of young people tell us that they don’t have their own GP. Here are a few reasons why it’s worth finding a good one (or strengthening your relationship with a GP you already have):
GPs can help with anything from colds and flu to relationships, sexual health and fertility, mental health and emotions, and problems relating to study, work or finances.
They are as skilled at providing direct care as they are at networking, finding and linking you in with other health professionals as needed and acting as your central point of care.
GPs can also work with your oncology treating team to provide follow up care and help you to manage late and long term effects.
They’re accessible - GPs work in the community in clinics or practices, which tends to make them a lot more accessible than oncology treating teams (who are usually based in hospitals). You can also see them as often as you need to.
DID YOU KNOW?
GPs can often help you access medicare rebates for a wide range of specialist services through Chronic Disease Management Plans, Team Care Arrangements or the Better Access initiative. This means you may be able to access free or low cost sessions with psychologists, exercise physiologists, physiotherapists, occupational therapists, dieticians and more.
Young people report many benefits of having a good GP, including feeling more confident in managing health, reducing anxiety or worry about health concerns and knowing they can see their GP as often as they want or need to.
FINDING THE RIGHT GP FOR YOU
The best time to find a GP is before you need them. They should be someone you feel comfortable with, can be honest with, and trust. If you’ve already got a GP but don’t feel that you can have this kind of relationship with them, consider finding a new one- it’s okay to shop around.
It really helps to have a regular GP, so when you’ve found someone you like, try to see them every time you go to the doctor (or at least another doctor at the same clinic/practice). Having a regular GP means better coordination and continuity of care, which we know can lead to better health outcomes. It also means you’ll already have a relationship with them, and that you won’t have to go through your health history every time.
TIPS FOR FINDING A GP
Ask for recommendations from friends, family or any health professionals you know (your treating team or otherwise)
Search online (e.g. healthdirect) to find individual GPs or practices close to you- some sites let you search by location or interest area
Check out GP practice websites to find more information about individual GPs there
Contact GP practices and ask whether they have anyone with a special interest in young people, experience with cancer or anything else that’s important to you
Schools, TAFEs and universities often have their own GPs
Headspace centres often have GPs or can help you find one
OTHER IMPORTANT CONSIDERATIONS
While your GP needs to be someone you can trust and be open with, you may also want to consider the following when choosing one:
Other qualities that are important to you - for example, you may want a GP with experience in working with young people, cancer or other areas of health, or have language, cultural or other preferences
Location and opening hours - if these things are convenient for you it will make seeing the same doctor each time much easier
How easy it is to get an appointment - some GPs may have limited work hours or heavy caseloads that make it difficult to get an appointment when you need it
Cost - some GPs ‘bulk bill’ appointments (i.e. Medicare covers the full cost) while others charge a fee that you will have to pay (the ‘gap’). It’s always worth asking if you can be bulk billed
The best way to find a good GP is to book an appointment and talk with them about your needs and expectations (it can help to write this down beforehand). Don’t be afraid to meet with different doctors until you find the one that’s right for you.
HOW GPs WORK
If you haven’t seen a GP in a while or are about to see a new one, it can be helpful to know the following before that first or next appointment:
GPs charge different rates for their services and it is important to ask about cost before you go. Some GPs only charge the amount covered by Medicare. This is called bulk billing and it means no cost to you. For others you may be asked to pay a ‘gap’ fee.
It’s always worth asking if you can be bulk billed- many GPs do so for young people, or if you have a Health Care Card.
Medicare cards provide access to free or lower-cost GP visits and prescriptions, and free care in public hospitals. When you make a GP appointment, you will be asked for your Medicare Card number.
You may still be listed on your parent or guardian’s card, but if you are over 15 you can get your own. It’s a good idea to do this both for privacy and independence, as it means your visits to GPs or other health professionals are linked exclusively to you.
GPs usually offer a standard or long appointment. Standard appointments last for 10-15 minutes and are meant for addressing 1-2 simple issues. If it is your first appointment with the GP, or if you have complex needs or multiple things to discuss, you need a long appointment (20-30 minutes). Ask the practice reception staff for advice if you aren’t sure.
It is important to know that when booking your appointment, no one needs to know why you want to see the GP and you don’t need to give a reason.
TIPS FOR MANAGING APPOINTMENTS
Book ahead - GP practices are busy places and won’t always have appointments available straight away. Call ahead as much as possible to maximise your opportunity to get the time, day and doctor you want.
Be prepared to wait - GPs often have to manage emergency appointments between seeing booked patients. Book one of the first appointments of the day to minimise the chances of waiting around.
Your appointments with the GP and what you discuss are confidential unless the GP determines that there is a risk to you or someone else. If this happens, the plan for sharing information with others, to keep you safe, will be discussed with you.
It is important to know that GPs need your permission or consent to perform an investigation or procedure. You can also ask for someone else to be in the room with you if you like.
Legally, the GP has to document your appointment in your medical record. This is usually electronic and kept at the GP practice.
The record contains information about you, your medical history, appointments, outcomes and any letters between your GP and other professionals (e.g. your treating team). It means that if you need to see a different GP at the same practice, they will have access to your history.
You also have the right to access your medical record- talk to the practice or your GP. This can be useful if you change GPs.
HOW TO WORK WITH GPs
A good relationship with your GP can go a long way in helping you stay healthy and get the care you need, when you need it. Young people who take an active role in their care report feeling more satisfied with their GP, and more in control of their own health and wellbeing.
Below are some tips to help you build a great relationship with your own GP and make the most of the time you spend with them.
TRY TO BE CONSISTENT IN WHO YOU SEE
As mentioned earlier, booking in to see the same GP every time (or at least a GP at the same practice) means better coordination and continuity of care, which we know can lead to better health outcomes. It also means you’ll be able to build a relationship with someone, and that you won’t have to go through your health history every time.
WHAT TO BRING TO APPOINTMENTS
It can help to take the following:
Your Medicare Card and Health Care Card if you have one- or keep photos of the front and back in your phone if access is secure (e.g. using a passcode)
A health or treatment summary if you haven’t seen this GP before- this may be a letter or other document from your oncologist with information about your diagnosis, treatment, the plan for follow up and contacts of your treating team
A list of questions and health concerns - try to be realistic about what you can cover in the time you have, and book appointment types accordingly (see ‘Appointments’ above)
A pen and paper or phone to make notes
Someone you trust if you’d like to have a support person with you- sometimes it’s helpful just having someone else there to hear the same information
TIPS FOR GOOD COMMUNICATION
Talking about health issues can sometimes feel difficult, scary or embarrassing (another reason why it’s so important to have a GP you trust and feel comfortable with). Below are some tips that may help, and for communicating well with your GP in general:
Write down everything you want to ask or talk about and use it to help guide your discussion. You can give it to your GP to read over first if you find certain things hard to bring up
Be open and honest - a good GP will never judge, and having a true and complete understanding of your life and health concerns is essential to their ability to provide you with the best possible care
Ask questions about anything you want to know about or don’t understand - there is no such thing as a silly question
Ask for what you need - be it clarification, more information, or time to think things over
KEEP YOUR OWN RECORDS
Having a health file at home can be helpful both for you and any health professionals you see in future. This might include details of your healthcare team, lists of medications, a copy of your health or treatment summary and any notes you make at appointments.
There’s quite a lot to take in here, so if nothing else, try to keep the following in mind:
Late and long term effects are different for everyone and not everyone experiences them- talk to your treating team about what may be relevant for you
Keep your follow-up appointments - they’re about catching and addressing any problems as soon as possible, and making sure you have the information and support you need to live the life you want
Find a good GP, preferably before you need them - it can be trial and error but it’s one of the most important health relationships you’ll ever have
Talk to your GP or treating team about any symptoms or concerns you have, big or small - it’s always worth bringing up, be it for advice, action or reassurance
Back yourself - you are the expert on your body, health and life, and your healthcare team is there to support you
USEFUL LINKS AND RESOURCES
Below are some additional resources you may find helpful. Please keep in mind that while there may be a lot of information online about late and long term effects, they are a topic that only your treating team can give you truly accurate information about. This is because there are multiple factors involved in determining risk for late and long term effects, and they are unique to everyone. Talk to your treating team about what may be relevant for you.
Healthdirect – search for GPs and other health services close to you, anywhere in Australia
Medicare Cards – information about Medicare Cards and how to get your own
MyGov – a secure, online way of accessing government services including Medicare, Centrelink and more. It provides one place to keep track of these services, make claims, update your contact details and receive important information