There is no right or wrong decision when it comes to your care. Some people with advanced cancer will always choose treatment, even if it only offers a small chance of improvement. Others want to make sure the potential benefits of treatment outweigh any side effects, or they want to choose the option they consider offers them the best quality of life.
Some people decide not to have active treatment for the cancer, but to have symptoms managed to reduce pain and discomfort, and to increase their independence as much as possible.
You may want to consider what quality of life means to you. Perhaps you would choose chemotherapy if it meant you could have two good weeks each month. Or you might value being able to spend as much time as possible with family and friends, without the disruption of treatment.
It is sometimes very difficult to make these treatment decisions. Organising your thoughts on paper can be easier than trying to do it in your head. Consider all the options available to you and write down any questions you have about your treatment choices. Your family and medical team may help with these decisions, but check that the decision you make is what you would like to happen and not what you think is best for family and friends.
"My wife had a second operation (contrary to the surgeon’s advice). In hindsight, she said she did it for the family but that it was a mistake."
To cure a primary cancer, it can seem worthwhile undergoing harsh or disfiguring treatments. But when a cure is unlikely, it may seem less reasonable to choose treatments that leave you feeling exhausted or sick, even if they will help you to live longer.
You have the right to say no to any treatment offered. For your refusal to be accepted, you must understand the nature of the treatment proposed and the consequences of not having it. You can refuse each treatment separately – you do not have to accept treatment on an all-or-nothing basis.
In some states and territories you can complete a refusal of medical treatment certificate, outlining your wishes, which your treating doctors must follow. See advance care directive for more information.
Some people find it hard to talk openly with the different doctors on their treatment team. You might be concerned about taking up too much time, or your doctor might give the impression of being rushed. It usually takes time for information to sink in and even more time to think over the choices being offered.
If your doctor uses medical terms you don’t understand, it’s okay to ask for a simpler explanation.
It is important that you know who is coordinating your care if you have many health professionals caring for you (a multidisciplinary team). As you go from one doctor to another, you might wonder who is responsible for what. It saves time and trouble if there is one person keeping track of your situation. This may be your GP, the palliative care doctor, the oncologist, a care coordinator or another member of the treatment team.
Let your doctor know if you are finding it difficult to talk, even after several visits. Most doctors want to be able to communicate well with their patients – it helps them too. However, it can take time to establish a good relationship.
Find out how, and in what situations, you should contact your doctor. When an unexpected problem arises, it can add to your stress if you’re confused about who you should call.
Getting a second opinion from another specialist may be a valuable part of your decision-making process. It can confirm or clarify your doctor’s recommendations and reassure you that you have explored all of your options. Some people feel uncomfortable asking their doctor for a referral for a second opinion, but specialists are used to people doing this.
Your doctor can refer you to another specialist and send your initial results to that person. You can get a second opinion even if you have started treatment or still want to be treated by your first doctor. Alternatively, you may decide you would prefer to be treated by the doctor who provided the second opinion.
Your doctor may suggest you consider taking part in a clinical trial. Research teams run clinical trials to test new or modified treatments and ways of diagnosing disease to see if they are better than current methods. There are trials for all sorts of treatments, including chemotherapy, radiotherapy and medications. Some trials also look at how well treatments control symptoms or whether they improve quality of life.
If you join what is called a randomised clinical trial for a new treatment, you will be chosen at random to receive either the best existing treatment or the promising new treatment.
To help you decide whether or not to participate, you can talk to your specialist or the clinical trials nurse. If you’re still unsure, you can also ask for a second opinion from an independent specialist. If you do decide to take part, you have the right to withdraw from the trial at any time; doing so will not jeopardise your ongoing treatment for cancer.
For more information about clinical trials and other research, including questions to ask your doctor and how to find a suitable study, view our Understanding Clinical Trials and Research booklet or call Cancer Council on 13 11 20. You can also find trials on the website www.australiancancertrials.gov.au.