Making decisions about treatment
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. However, it is important not to be rushed into a decision — it must be the right one for you.
While some people feel they are overwhelmed with information, others may feel that they do not have enough. Understanding your illness, the possible treatment and side effects will help you make your decision.
If you are offered a choice of treatments, including no treatment for now, you will need to weigh their advantages and disadvantages. If only one type of treatment is recommended, ask your doctor to explain why other treatment choices have not been advised.
You may want to ask your doctor questions, such as: “What is the aim of this treatment?” and “If I have treatment, how will it affect my quality of life?”
“At first I wondered if ignorance was bliss, but after a week I thought ‘No’. It’s my body and I want to know what is going to happen, and I want to know if I make a decision what will happen.” Silei
Talking with doctors
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 section on bowel cancer. 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.
Ask your local Cancer Society or call our Cancer Information Helpline 0800 CANCER (0800 226 237) for a copy of Questions You May Wish to Ask. The booklet has 23 frequently asked questions to ask your health professionals. The questions are designed to help you get information about your cancer and to make treatment decisions with your doctor and family/whānau. A space is provided under each question for you, your support person or doctor to write the answer. The booklet is available in 12 languages (including English).
Talking with others
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 advisor or another person who has had an experience of bowel cancer.
The Cancer Society has a service called Cancer Connect. This is a one-to-one telephone peer support service where you can talk to a person who has been through treatment for bowel cancer. Call the Cancer Information Helpline 0800 CANCER (0800 226 237) for more information. Talking it over can help you to sort out what course of action is right for you.
A second opinion
You may want to ask for a second opinion from another specialist. Your specialist or general practitioner can refer you to another specialist and you can ask for your records to be sent to the second doctor.
You may be interested in looking for information about bowel cancer on the internet. While there are very good websites, some websites provide wrong or biased information. We recommend you begin with the Cancer Society’s site and use our links to other good cancer websites. See our page with a list of recommended websites.
Taking part in a clinical trial
Research into the causes of bowel cancer and ways to prevent, detect and treat it is continuing. Your doctor may suggest that you consider taking part in a clinical trial. You could also ask if there is a clinical trial for your particular kind of cancer.
Clinical trials are a vital part of the search to find better treatments for cancer, and are conducted to test new or changed treatments to 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 you are asked to take part in a clinical trial, make sure that 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 doctor:
- What is the standard treatment if I do not participate in the trial?
- What is the possible benefit?
- Which 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 the treatment I receive in the trial is successful for my cancer, is there a possibility of carrying on with the treatment after 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 by computer to receive one treatment or the other, but either treatment will be right for your condition. In clinical trials, people’s health and progress are carefully monitored. If you do not want to take part, your doctor will discuss the best current treatment options with you.