Sometimes, it is difficult to make decisions about what is the right treatment for you. You may feel that everything is happening so fast that you do not have time to think things through. Some people find that waiting for test results and for treatment to begin is very difficult. While some people feel they are overwhelmed with information, others may feel they do not have enough. Understanding your illness, the possible treatment, and side effects will help you to make your own decisions.
If you are offered a choice of treatments, including no treatment for now, you will need to weigh up their advantages and disadvantages. If only one type of treatment is recommended, ask your cancer doctor to explain why other treatment choices have not been advised.
The risk of not having treatment needs to be weighed against the risk of side effects from treatment. You may want to ask your doctor questions like: “Can I expect to live longer if I have treatment?” and “If I have treatment, is there a risk that my quality of life could worsen because of the side effects?”
Some people with cancer will choose treatment, even if it only offers a small chance of cure. Others want to make sure that the benefits of treatment outweigh any side effects. Still others may choose the treatment they consider offers them the best quality of life. Some may choose not to have treatment but to have any symptoms managed as they arise in order to maintain the best possible quality of life.
You may want to see your doctor a few times before making a final decision on treatment. It is often difficult to take everything in, and you may need to ask the same questions more than once. You always have the right to find out what a suggested treatment means for you, and the right to accept or refuse it.
Before you see the doctor, it may help to write down your questions. There is a list of questions at the end of this booklet that may assist you. Taking notes during the session can also help. You may find it helpful to take a family member or friend with you to take part in the discussion, take notes, or simply listen. Some people find it is helpful to record the discussion.
It may be helpful to ask your cancer doctor what support is available to you; for example, social workers, physiotherapists, a dietitian, or a cancer nurse. You can contact the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237).
Once you have discussed treatment options with your doctor, you may want to talk them over with someone else, such as:
- family or friends
- specialist nurses
- your family doctor
- the Cancer Society
- the hospital social worker or chaplain
- your own religious or spiritual adviser
- another person who has had cancer.
You may be interested in Cancer Connect NZ, which arranges telephone peer support calls for people living with cancer and their caregivers. Phone the cancer information nurses on the Cancer Information Helpline 0800 CANCER (226 237) for more information.
Cancer Chat is an online/support and information forum that you can join.
Talking it over can help to sort out what course of action is right for you.
“I’m the type of person to ask questions, they [the team] were really kind. Not patronising ‘kind’. They were very patient explaining to me.” Silei
You may want to ask for a second opinion from another cancer doctor. Your cancer doctor or general practitioner can refer you to another cancer doctor and you can ask for your medical records to be sent to the second doctor. You can ask for a second opinion even if you have already started treatment or still want to continue treatment by your first cancer doctor. However, if the second opinion differs from that of the first doctor, he or she cannot be expected to give a treatment that he or she does not consider to be the one best for you. Treatment would then have to be given by the second cancer doctor.
Sometimes people seek a second opinion overseas. An overseas cancer doctor may recommend a treatment that is not available in New Zealand, which may be very expensive and the New Zealand public health system will not pay for.
If the recommendation is to participate in a clinical trial (see below) this can only be done through a doctor registered with the clinical trial.
You, your friends, or family/whānau may decide to search the internet looking for treatments for cancer. The internet is an excellent source of high-quality information. There is also a lot of opinion presented as fact, but supported by little, if any, evidence. The amount of information and opinion is often overwhelming. Sifting and sorting it may be very difficult. Some suggested websites with information about chemotherapy are given in a later section.
Research into the causes of cancer and into ways to prevent, detect, and treat it is continuing. Your cancer doctor may suggest you consider taking part in a clinical trial. Clinical trials are a vital part of the search to find better treatments for cancer. Doctors conduct clinical trials to test new or modified treatments and see if they are better than existing treatments.
Many people all over the world have taken part in clinical trials that have resulted in improvements to cancer treatment. However, the decision to take part in a clinical trial is always yours. If your doctor asks you to take part in a clinical trial, make sure you fully understand the reasons for the trial and what it means for your treatment. Before deciding whether or not to join the trial you may wish to ask your cancer doctor or research nurse:
- What treatments are being tested and why?
- What tests are involved?
- What are the possible risks or side effects?
- How long will the trial last?
- Will I need to go into hospital for treatment?
- What will I do if any problems occur while I am in the trial?
If you decide to join a randomised clinical trial you will be given either the best existing treatment or a promising new treatment. You will be chosen at random to receive one treatment or the other, but either treatment will be appropriate for your condition. If you join a clinical trial you have the right to withdraw at any time. Doing so will not interfere with your treatment for cancer. It is always your decision to take part in a clinical trial. If you do not wish to take part, your doctor will discuss the best current treatment for you.