Dr. Daniel - The Cancer Directory

As already discussed in previous chapters, people with cancer vary greatly in the amount of information they wish to receive about their illness. Most doctors have come to respect their patients’ preferences, and most cancer specialists try to answer questions as honestly as they can. Because people differ greatly in their needs, the oncology team will generally be tentative as to how much information to impart to you until they get to know you, and what your needs and preferences are. This is to avoid giving information to those who don’t want it.

You therefore need to make sure that you let them know exactly how much you want to know, and initiate discussions about any aspects they may not be covering. The team will take their cues from you. As you encourage good communication, you will find they will do their best to meet your needs. This is not easy at a stressful time, so having somebody with you and a list of questions you need to have answered will be helpful.

To get the information you want, you have to know what to ask. This is a major problem especially at a time when you are feeling emotionally vulnerable. Many people are unfamiliar with the workings of a car, but are quite happy to nod wisely while the mechanic explains in technical terms what is wrong. But with cancer, you cannot just do that. Having a reasonable understanding of your options makes good sense, and getting information often requires tenacity and persistence. Some doctors and clinics just won’t seem to tell you anything – partly because there is often never enough time. Giving information takes time, especially if it is a genuine dialogue between the doctor and patient. However, it is your life we are talking about, so arming yourself with information is an important way to empower yourself and get yourself back in control.

Living as we do in a consumer age, you have a right to expect high-quality information that allows you to explore different avenues. So, to get to grips with your situation, see the Resources Directory for recommended websites, and other resources for the information you need to guide you to integrated medicine doctors who can help you review your options.

Alternatively, use the Cancer Options team (see the Resources Directory) and have specialist cancer nurses do the research for you, break down the information into clear, readable formats and provide background explanations to the treatments. They can also advise you on how to discuss the treatments with your doctors, how to go about getting a second opinion and how to get into clinical trials. They can then provide you with a report and work through it with you until you feel happy and confident that you have received all the information you need to decide on your best treatment plan.

Another useful method is networking. People diagnosed with cancer often feel they are alone. Yet, once they start discussing their situation with others, they are often surprised to find how many other people known to them or their families are also dealing with cancer. So, find out from them where they are getting their information. They may be using the Internet or specific cancer charities and support groups. However, it is always worth remembering that everyone’s cancer is unique to some degree, and treatments and progress cannot be compared specifically.

Chapter 5 on alternative cancer medicines will provide access to further information with which to arm yourself as you make your treatment choices.

Comprehensive lists of questions to ask your doctors are given in Chapter 3 and cover:

• your cancer

• your treatment options

• the nature of your treatment once you have chosen.

Nowadays, most cancer doctors tend to avoid giving estimates of survival time as individuals are very different, and there is a risk that a time given by ‘the voice of authority’ may become a self-fulfilling prophecy. Rather than having a timescale ticking away in the background, focusing on your recovery is essential.

Doctors often disagree, which may seem surprising, but medicine is still in many ways an art rather than science. There are several ways in which the same result can be achieved, and cancer medicine is no exception. Many large centres have case conferences where individual patients are discussed and treatment options reviewed. There is regular disagreement on even the simplest decisions, such as whether to recommend radiotherapy after an operation or how many doses of chemotherapy should be given. Where doctors don’t yet have the knowledge, clinical trials are set up to try and determine the best way to treat a certain type of cancer. Doctors have to come up with the best treatment plan for each person, with constantly moving goalposts as treatment techniques and drugs are continuously evolving.

Variations in treatments are offered by different NHS doctors, and you may also choose to get your treatment privately. Treatment approaches vary around the world and you may feel you would like to look further afield to:

• check that the treatment being offered to you is considered the best regime available

• establish if any other countries have any new developments or technology not yet available in your country

• look at other treatments to see what fits best into your personal approach and value system.

To find out what other options are available to you, you can:

• explain your preferences to your doctor and ask him to find you other options to be looked into

• use your own resources and information to research what is available and discuss it with your team

• use the UK Cancer Options team to do your research and work through the choices with your doctors.

There are several issues to consider when looking at your options:

• Would you be prepared to have treatment in another part of the country?

• Would you be prepared to have treatment abroad?

• Do you have any financial resources that can be used to increase your options?

No doctor of any standing will be offended if you ask for a second opinion in your own country. We all realize the complexity of modern medicine and that no one is infallible. If you are not happy with what is being proposed, ask for a second opinion. It will save time and money to take all your test results and a letter with your complete medical summary about your condition with you.

You can either leave the choice of who you see for a second opinion to your doctor, or you can use the websites in the Resources Directory or the Cancer Options team to find top specialists for your kind of cancer, then request a referral from your GP to the doctor of your choice.

After researching and gathering the information you need, making your decisions will take time. It may take you a few weeks to gather all the details you need to work out the best treatment plan for you. Unfortunately, this often conflicts with the natural urge and pressure from others to take quick and decisive action, and begin your treatment as soon as possible. Nevertheless, remember that many people have done this and, later on when they have looked around and have a greater understanding of cancer, wished they had taken more time to look at the pros and cons of each treatment option. The fact that you are reading this book shows that you are already taking a careful and measured approach to choosing your treatments.

If you have only just been diagnosed, taking the time to consider the future implications of your treatment and your own personal philosophy of how you want to deal with your cancer, and devising a treatment plan that suits you may be the most valuable time you spend to ensure your longer-term well-being.