It can be overwhelming to decide on a treatment path. If the cancer was difficult to diagnose, it may have been diagnosed at a later stage. Your options may feel very limited compared with a common cancer. While some people want detailed information, others prefer to leave decisions to their doctors.
Learn more about:
- Talking with doctors
- Know your options
- See a specialist treatment team
- Recording the details
- Asking questions
- Considering a second opinion
- Deciding on treatment
- Joining a clinical trial
- Video: What are clinical trials?
- Podcast: Making Treatment Decisions
Talking with doctors
Understanding the cancer, the available treatments, possible side effects and any extra costs can help you weigh up the options and make a well-informed decision. Check with your specialist how soon treatment should begin, as it may not affect the success of the treatment to wait a while.
Ask them to explain your options and take as much time as you can before making a decision. It is also okay to ask what will happen if you do not have treatment.
Know your options
You may have a range of treatment options or they may be very limited. Common cancer treatments are based on established guidelines for the best care for that type of cancer. An RLC cancer may not have any guidelines. Treatment for RLC cancers can be quite different from treatment approaches for more common cancers – even when the RLC cancer is a subtype of a common cancer.
In general, your treatment options will depend on:
- the type of cancer you have
- the stage and grade of the cancer
- extra tests that give more information about the cancer (e.g. genetic or molecular tests)
- your overall health
- any other medical problems you might have
- your personal preferences.
See a specialist treatment team
Your treatment is usually planned and managed by a multidisciplinary team (MDT). This is a group of health professionals who work together to discuss your physical and emotional needs and decide on a treatment to recommend. Some RLC cancers are subtypes of common cancers, so are managed by the MDT for that cancer. In other cases, treatment will be very different, and you may have an MDT with more experience in your specific cancer type.
You may need to travel to a specialist centre to see the right team for you. Or you may have some telehealth appointments. Treatment may be planned by an MDT at the specialist centre but then given in a hospital closer to home. Or the treatment may need to be given in a specialist centre.
Record the details
When your doctor first says you have cancer, you may not remember everything you are told. You will probably have many medical appointments. Taking notes can help or you can ask if you can record these discussions. It can help to have a family member or friend go with you to appointments to join in the discussion, write notes or simply listen.
Ask questions
You are likely to have a lot of questions. If you are confused or want to check anything, it is important to ask your doctor. Try to prepare a list before each appointment (see also treatment-related questions). If you have a lot of questions, you could talk to a cancer care coordinator or nurse.
Consider a second opinion
You may want to get a second opinion from another specialist to confirm or clarify your specialist’s recommendations or know you have explored all your options. Specialists are used to this. Your doctor or specialist can refer you to another specialist and send them your initial results.
You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. You might decide to be treated by the second specialist. You may also be able to have a video consultation with overseas specialists with experience in your RLC cancer.
It’s your decision
Adults have the right to accept or refuse any treatment offered. Some people with advanced cancer choose treatment that has many side effects even if it gives only a small benefit for a short time. Others focus their treatment on quality of life. You may want to discuss your decision with your treatment team, GP, family and friends.
For more on this see Cancer care and your rights.
Can I join a clinical trial?
Clinical trials of new treatments for RLC cancers are difficult to conduct due to the low number of patients. This is because clinical trials usually rely on large groups of people who have a similar condition. However, if there is a suitable clinical trial available, your doctor or nurse may suggest you take part.
Clinical trials test new or modified treatments to see if they are better than current methods. For example, if you join a randomised trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the modified new treatment. Over the years, trials have improved treatments and led to better outcomes for people diagnosed with cancer.
You may find it helpful to talk to your specialist, clinical trials nurse or GP, or to get a second opinion. If you decide to take part in a clinical trial, you can withdraw at any time.
For more information, see Clinical trials and research. To find current clinical trials near you, visit Cancer Institute NSW or Australian Cancer Trials.
→ READ MORE: Treatment options for RLC cancers
Video: What are clinical trials?
In this video, Medical Oncologist Dr Elizabeth Hovey explains what clinical trials are and how they can improve cancer treatment.
Podcast: Making Treatment Decisions
Listen to more episodes from our podcast for people affected by cancer
Key resource
The information on this page is also available for download.
More resources
Dr Damien Kee, Medical Oncologist, Austin Health and Peter MacCallum Cancer Centre, and Clinical Research Fellow, Walter and Eliza Hall Institute, VIC; Emeritus Professor Phyllis Butow, Psychologist, The University of Sydney, NSW; Alison Danis, Consumer; Dr Michelle Harrison, Medical Oncologist, Chris O’Brien Lifehouse, NSW; Jess Pike, Senior Social Worker, Westmead Hospital, NSW; Trish Taylor, Consumer; Lesley Woods, 13 11 20 Consultant, Cancer Council WA.
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