Making Decisions about cancer treatments
If you or someone you care about has been diagnosed with cancer, you probably have many questions and concerns. There are many decisions to make about the treatment and care offered. It often helps to find out more about your illness and what may happen to you.
- Where can I get help with making decisions about my cancer treatment?
- How can the Cancer Nurse Coordination service help me?
- What are some ways to get the most out of my visit with my doctor and cancer specialist?
- What are some questions that I can ask my doctor?
- What are my rights as a patient?
- Can I get a second opinion?
- What is a multidisciplinary team?
- What are the costs involved with treatment?
- What does Medicare cover?
- What does Private Health Insurance cover?
- How can I get financial assistance with medications?
- What if I need more assistance with understanding the costs of my treatment?
- How will I know which treatments are safe to use?
- What is complementary and alternative therapy?
- Where do I find reliable information about complementary and alternative therapies?
- How do I make an informed decision about a particular complementary or alternative therapy?
- How can I avoid harmful complementary or alternative therapies?
- What is integrative medicine?
- Does the Cancer Council recommend any complementary therapies for cancer patients?
- What is a clinical trial?
- How do I find out about clinical trials for my type of cancer?
To further discuss any of your concerns about this information please contact the Cancer Council Helpline 13 11 20.
Where can I get help with making decisions about my cancer treatment?
Being better informed can help you feel more in control of your situation.
The Cancer Council Helpline is able to assist you with information about your particular type of cancer and treatment, navigation of the health service and support options that are available for people with cancer.
You may also like to discuss treatment with a specialist Cancer Nurse Coordinator.
How can the Cancer Nurse Coordination service help me?
The cancer nurse coordination service is a free statewide service provided by the WA Health Department for people affected by cancer within Western Australia. The team is made up of specialist nurses who are highly knowledgeable about cancer and cancer treatments.
The specialist cancer nurse coordinator can:
- provide information on your diagnosis and treatment
- liaise with your treating hospital and other services
- assist you through the health care system and find the best services to help you and your family
- act as a central point of contact
- coordinate appointments
The service is available Monday to Friday from 8am to 4.30pm.
If your issue is urgent please contact your GP or your nearest emergency department.
For more information and contact details about the specialist cancer nurse coordinator that may be suitable for your cancer please contact the cancer nurse co-ordination service.
What are some ways to get the most out of my visit with my doctor and cancer specialist?
To get the most out of your visit to your doctor or specialist you might find it useful to:
- Request a longer appointment if you have a number of issues to discuss.
- Prepare a short list of questions beforehand in order of most important.
- Write down answers if possible.
- Take a friend or relative for support.
Remember, if you don’t understand the answers it is ok to ask your doctor to explain again. If you have difficulty communicating in English ask for an interpreter.
What are some questions that I can ask my Doctor?
There are many different cancers, each with different treatments. Only your doctor can give you the information that is specific to you.
It can be helpful to prepare a list of questions to ask your doctor, remembering you may need to request a longer consultation.
The Cancer Council understands that this may be a confusing time and have produced the brochure Questions you might like to ask your Doctor (pdf 70kb) which outlines general questions. Then you could ask your doctor more specific queries about tests, treatments and participating in clinical trials. It is a good tool to start with if you are overwhelmed by all the information that is coming your way.
You can also request a copy of the brochure from the Cancer Council Helpline on 13 11 20.
What are my rights as a patient?
When cancer is diagnosed you enter into a partnership with your doctor and other health care professionals.
You have a right to:
- ask questions of your doctor and your multidisciplinary team
- be specifically informed about the details of your care sufficient to enable you to make an informed choice about treatment from the options available to you.
Cancer Council NSW produce a booklet Understanding Your Rights - A practical guide for people with cancer, their families and friends.
This booklet outlines what you can reasonably expect of your treatment team and the health care system. It’s about working in partnership – not about making demands of your doctors or treatment team. Just as you can expect certain things of your doctors and the health care system, you also have responsibilities.
For more information on your rights as a patient, please see the Health Consumer Council website and the Department of Health WA website.
Can I get a second opinion?
You may want to ask for a second opinion from another specialist. This could help your decision making. Your specialist or local doctor will respect your decision and can refer you to another specialist. You can also ask for copies of your results to be made available to the second-opinion specialist.
You can ask for a second opinion even if you have started treatment or still want to be treated by your first specialist.
It is important to trust your specialist and if you don't, then consider finding another one. If you do trust them, and work with them, you will gain the most from your appointments and your treatment. It isn't necessary to be friends and they may be quite abrupt, but it's the trust that's most important.
What is a multidisciplinary team?
Often you will have a number of people involved in your care. This can be referred to as a multidisciplinary team.
A multidisciplinary team is a team of experts who plan the best treatment in partnership with you. They will work closely together to ensure you are offered the best available treatment. Your team may include medical oncologists or haematologists, radiation oncologists, radiation therapists, pathologists, specialist cancer nurse coordinators or practitioners, specialist chemotherapy nurses, pharmacists, allied health professionals such as a dietician, physiotherapist, social worker, clinical psychologist, and pastoral carer. Feel free to ask your team any questions. Let them know if you have concerns about your treatment and how you are feeling.
What are the costs involved with treatment?
You have a right to know how much your treatment will cost you. A serious illness often causes practical and financial difficulties. A basic understanding of the health care system in Australia can help avoid some hidden costs. Please discuss with your treating doctors what costs you may incur.
In Australia the health system consists of a Government funded health system Medicare, and a private health system.
What does Medicare Cover?
Medicare is an Australian (Commonwealth) and State government funded public health care system. It provides free treatment for public patients in public hospitals and free or subsidised care by providers such as doctors and specialists. Medicare is available to Australian residents. If you are in Australia on a temporary visa, you are eligible for Medicare only if you are from a country that has a 'Reciprocal Health Care Agreement' with Australia. You can check eligibility by calling the Medicare Customer Service Centre on 13 20 11.
The Medicare Safety Net protects you against high medical costs for non-hospital care. It covers services such as visits to a GP or a specialist, x-rays, blood tests, scans and ultrasounds.
If you are bulk-billed, the cost of services is met by Medicare, otherwise you’ll have to pay extra. That’s the case even if your doctor only charges the scheduled fee, as Medicare refunds only 85%. The other 15% is called the gap amount (correct as at July 2009).
If your doctor charges more than the scheduled fee your extra costs would be higher. The difference between what Medicare refunds and what your doctor charges is referred to as the out-of-pocket cost.
You can speak to someone at the Medicare Customer Service Centre on 13 20 11 or visit Medicare Australia to find out how much of your treatment may be covered by Medicare and how much of the gap you may have to pay.
What does Private Health Insurance Cover?
Private health insurers offer cover for medical services not covered by Medicare, like private hospital cover, dental, physiotherapy and ambulance services.
If you have private health insurance you can contact your private health insurer to see what costs of your treatment may be covered and what out of pocket expenses you may face. Using your private health insurance will allow you to be treated by the doctor of your choice. For more information, please visit the Australian government information page on private health insurers.
How can I get financial assistance with my medications?
Medicines available on the Pharmaceutical Benefits Scheme (PBS) can be discounted under the PBS Safety Net. You need to register for the Medicare Safety Net.
The fine print: You need to keep a record yourself. Get a Prescription Record Form from your pharmacy and don’t lose it. You’ll need to take it with you every time you buy a PBS medicine, so your pharmacist can record each purchase.
For further information please visit the Pharmaceutical Benefits Scheme or phone 1800 020 613.
What if I need more assistance with managing the costs of my treatment?
For further assistance with managing the financial cost of your treatment you may want to contact the social worker at your treatment centre or contact the social worker at Centrelink.
Financial assistance may be available through benefits and pensions to help with the cost of prescription medicines and for travel to medical appointments.
The Cancer Council Helpline on 13 11 20 can suggest practical measures to help you understand and plan your finances. The Cancer Council WA also offer a free financial advisory service.
How will I know which treatments are safe to use?
Your oncologist or haematologist will tell you about conventional medical treatments. These are also called ‘evidence based’, ‘mainstream’ ‘medical’ and ‘standard’. They include surgery, chemotherapy, radiotherapy, hormone therapy and biological therapies (cancer vaccines, interferon). These are recommended because there is scientific evidence they are the best treatment options. They have been tested in clinical trials and/or evaluated after many years with patients.
Unfortunately there are a minority of people who may falsely promote ‘cancer cure’ treatments which don’t work or can be dangerous. There are also people who may wrongly claim that mainstream or conventional treatments such as chemotherapy, radiotherapy and hormone therapies don’t work.
Be wary if someone:
- Suggests your cancer has been caused by poor diet or stress and claims your cancer can be cured with a special diet.
- Promises a cure for your cancer or to detoxify, purify or revitalise your body.
- Charges you a lot of money and asks for it upfront.
It is important you talk to your doctor before using any type of therapy so that you can discuss your needs and decide together the safest therapies for your situation. It may be safe to use certain therapies alongside your standard cancer treatment.
Some herbs and vitamin supplements can cause adverse side effects or affect your cancer treatment; some may even stop your mainstream treatment from working. Inform your doctor before you take any product.
What is complementary and alternative therapy?
You may hear about treatment approaches known as complementary or alternative therapies.
Complementary therapies are used alongside your conventional treatment and are increasingly considered supportive for people with cancer. Examples of commonly used complementary therapies include acupuncture, meditation, massage, reflexology, and Reiki. While these therapies have not been scientifically proven to treat or cure cancer many are known to help some people feel and cope better with cancer and its treatment.
Alternative therapies are used instead of conventional (mainstream) cancer treatments.
Alternative therapies may carry claims that they stop cancer growth or even cure cancer. Alternative therapies may be harmful if people with cancer delay or stop using conventional treatments in favour of them. They are often expensive and may promote extreme diets or lifestyle changes. Examples of alternative therapies are microwave therapy, ozone therapy, magnet therapy, high-dose supplements of vitamins or other compounds such as laetrile (B17), shark cartilage, mistletoe extract or melatonin. Some herbs and nutritional supplements interact with chemotherapy or other medications.
It is important you talk to your doctor before using any type of therapy so that you can discuss your needs and decide together the safest therapies for your situation.
Where do I find reliable information about complementary and alternative therapies?
For most people the diagnosis of cancer comes as a huge shock. You may receive lots of advice and information about different types of therapies, from your family, friends, medical professionals, health therapists, workmates, the internet and various media sources.
Some advice will be reliable and helpful; some may be confusing, false and misleading.
The following information aims to help you and those close to you sort through this advice, ask useful questions and make the choices that are best for you.
The following websites provide information about the use of complementary and alternative therapies in the management of cancer:
- Memorial Sloan-Kettering Cancer Centre
- Complementary and Alternative Medicine Evidence Online (CAMEOL) database
- National Centre for Complementary and Alternative Medicine (NCCAM)
- Complementary/Integrative Medicine Education Resources (CIMER)
- Complementary and Alternative Medicine Specialist Library
- Medline Plus – Herbs and Supplements
- Integrative Medicine Gateway
- Macmillian Cancer Support
You can also download the booklet on Understanding Complementary Therapies produced by Cancer Council NSW.
How do I make an informed decision about complementary and alternative therapies?
Sometimes it is difficult to decide on the right treatment, be it conventional, complementary or alternative. You may feel that everything is happening so fast that you don’t have time to think things through properly. Usually, however, there is time to consider the different treatment options.
If you are considering using an alternative therapy, it is recommended you do not delay conventional treatment in favour of it.
You need to make sure you understand enough about your cancer and possible treatment side effects in order to make your own decisions. You always have the right to find out what a suggested treatment means for you, and the right to accept or refuse it, whether it is a conventional, complementary or alternative.
How can I avoid harmful complementary or alternative therapies?
- You can minimise the use of harmful therapies by understanding everything there is to know about a therapy BEFORE you use it.
- Always check with your doctor before commencing any complementary or alternative therapy.
- Always check the qualifications of the therapist and ask questions such as:
- How long has the therapist practised?
- Have they treated cancer patients before?
- What do they expect you to gain from the therapy?
- How much will the therapy cost.?
- How many sessions or quantities of the product are recommended?
- Speak openly with health professionals and any complementary therapists involved in your cancer care.
- Talk to other people who have experienced these therapies.
- Borrow books on the topics from the Cancer Council WA or SolarisCare libraries.
- Read about the therapies on the recommended internet sites. It is important to use qualified and accredited practitioners. Accredited practitioners are generally assumed to meet certain standards in order to be registered with their peak professional body. Some therapies, such as massage, if not performed by a suitable qualified therapist, can hinder rather than help you.
You can also contact the Cancer Council Helpline on 13 11 20.
What is integrative medicine?
Integrative medicine is the use of conventional and complementary therapies with proven benefits as a way of caring for someone. There is some high quality evidence of the safety and effectiveness of the therapies used in integrative medicine and there are a number of general medical practitioners who practice integrative medicine. The Australasian Integrative Medical Association website provides more information.
Does the Cancer Council recommend any complementary therapies for cancer patients?
The Cancer Council WA and SolarisCare are two organisations that offer a range of complementary therapies free to those affected by cancer in WA.
Programs and choice of therapies offered are guided by the Cancer Council WA. Complementary and Integrative Therapy Advisory Group (CITAG) whose membership includes health professionals, complementary therapists and cancer patients. CITAG guides the development of safe protocols for therapists and information sheets for cancer patients wishing to use a particular therapy.
Go to our Complementary Therapies page for more information about the Cancer Council and Solariscare Complementary therapy programs.
What is a clinical trial?
If you have been diagnosed with cancer, you may want to know about clinical trials and what role they may have in your treatment. Clinical trials are research studies that test new and better ways of improving health in people.
Go to our Clinical Trials page for more information about clinical trials, including those available to cancer patients in Western Australia.
The Cancer Council NSW booklet Understanding Clinical Trials - A guide for people with cancer, their families and friends is available to download.
A PDF is available giving a summary about joining clinical trials.
How do I find out about clinical trials for my type of cancer?
Go to the Clinical Trials registry page for more information about specific trial for your type of cancer.
