The Cancer Recovery Guide: how to live after a diagnosis and tackle the scary bits head-on.

A cancer diagnosis is difficult and just the beginning of a long and challenging journey. Professor Kerryn Phelps (AM) has provided care to cancer patients over many years and knows the issues they face. Her philosophy is to empower patients with the information they need to improve their well-being in whatever way possible. Here is some incredibly helpful advice from her recently released book The Cancer Recovery Guide.

Hearing the Word ‘CANCER’ is scary.

Being diagnosed with cancer can force you into a fog of fear for your future. What treatment do I need to have and what effect will it have on me? What are my chances of survival? How will it affect my family? Once it is treated, could the cancer come back?

If you have been close to someone who has battled against cancer you may have a well-founded fear of the disease, its treatment and its possible outcome. We know the statistics about cancer. And they are scary.

According to the Cancer Council Australia, cancer is one of the leading causes of death in Australia, accounting for about 3 in 10 deaths. Cancer remains the second most common cause of death in the US, accounting for nearly one of every four deaths. While these are the frightening numbers, it’s important to realise they’re not the whole equation.

Keep in mind when you hear about ‘cancer statistics’, you often hear only the negatives. In the early part of my career in the 1980s, a woman diagnosed with metastatic breast cancer would have been told there was nothing more to be done, and to make plans for the limited time she had left.

Nowadays, it is a vastly different picture. That same woman would now be told about her options for the next phase of treatment which might include chemotherapy, hormonal therapy, radiotherapy or targeted therapy (sometimes called biological therapies) which are drugs that stop the growth of particular types of cancer cells. Even with metastatic disease, we are often able to plan for long-term survival. The survival rate for many common cancers, such as breast cancer, has increased by 30 per cent in the past two decades as a result of earlier diagnosis and more effective treatments.

Additionally, more than 60 per cent of people diagnosed with cancer in Australia will survive more than five years after diagnosis. So we have developed this relatively new concept of ‘survivorship’, how you live your life beyond a cancer diagnosis. At its most positive, a diagnosis of cancer is a signal to reassess your life goals, and to live as well as you can. Unless you are told that there is 100 per cent chance that your cancer will be cured, you are going to experience a sense of uncertainty and anxiety. What can you do to reduce that level of fear? Arming yourself with information is the first step.

What is cancer?

It is important to realise that cancer is not a single disease. The word ‘cancer’ refers to literally hundreds of diseases that have common features, but which can have very different outcomes. Different cancers behave differently. There has been a great deal of debate recently in the medical profession about what should even call ‘cancer’. This has arisen out of decades of progress in screening and early detection, resulting in many cancers being found that might otherwise not have made themselves known, or ever needing to be treated at all.

A group from the National Cancer Institute in the United States recently called for an overhaul of the use of the word ‘cancer’, suggesting that we reserve the word for malignant disease with a reasonable likelihood of causing death if it were to be left untreated. This means there are some diseases in the cancer spectrum that will cause little or no harm in your lifetime, or which are low grade and very treatable. A low-grade prostate cancer might fall into this category.

Some cancers have been shown to respond well to changes in the way you live your life. On the other hand, a cancer diagnosis may mean you are in for the fight of your life . . . literally.

One of the most effective ways of reducing your level of fear after a diagnosis of cancer is to gather as much credible and useful knowledge as you can. You need clear and honest information from your cancer specialists about your situation and what lies ahead. First and foremost, you need accurate information on your type of cancer and its apparent level of aggressiveness. Then you need a plan of action with estimated time frames.

Make sure you do some homework and gather a support team around you. This will include your special people: family and friends. Your medical and allied health team will be essential, of course. I will explain later about how to do this. Make sure the cancer specialists you see are experienced with your particular type of cancer.

For the less common cancers, this may mean referral to a larger cancer treatment centre. It is important to talk about your fears and anxieties about your cancer and its treatment. Your doctors or other health professionals can help by giving you the time to ask all your questions provide you with honest answers to the extent that they are able to predict what is likely to happen. Connect with support groups or telephone help-lines that can give you information and share experiences with you at times when you need to talk to people who have been through the same experiences of cancer treatment.

Signs that fear is getting in the way include:

• you are having trouble sleeping at night
• you feel anxious most of the time
• you feel hopeless about the outcome of your cancer
• you have trouble concentrating
• you don’t look forward to the activities you usually enjoy
• you lose your appetite. Long-term remissions and ‘cures’ are not achieved without struggle and change. Surgery, radiotherapy and chemotherapy can be very harsh physically and emotionally. If you explore adjunctive treatments and  activities alongside your conventional cancer treatment, it is important to ask yourself questions about why you are seeking these complementary approaches.
• Is it to reduce the side effects of treatment?
• Is it to help you recover from surgery or chemotherapy?
• Is it to improve your chances of survival? If you choose to add some adjunctive treatments, be clear about what you are trying to achieve and make sure the health professionals you see are well qualified and experienced in working with people undergoing cancer treatment. Warning bells should start to ring if a practitioner tells you to abandon your conventional medical treatment, or to conceal any treatment they recommend from your medical team.

This is an extract from The Cancer Recovery Guide by Dr Kerryn Phelps, published by Pan Macmillan, $34.99. You can purchase the book here.

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