The Cancer Directory. Dr. Daniel Rosy
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.
Taking your time
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.
However, especially when first diagnosed, you may feel unsure if it will be detrimental for you not to start treatment immediately. It would be worthwhile checking how much time you can take safely with your own doctor or an integrated medicine consultant (see the Resources Directory pages 351–3).
Explain that you wish to consider all the options available and ask them the following questions:
• How aggressive is my tumour and how fast is it growing?
• How long would you estimate my cancer has been there?
• Do you feel it would be detrimental to postpone action for a few weeks while I look at all the options? (If the answer is yes, ask why. What do they think will happen to your cancer during the delay?)
If you are considering treatments that are beyond your doctor’s field of expertise, such as immunotherapy or intravenous metabolic treatment, you may find that some doctors will not consider them a worthy alternative, and will try to influence you into looking only at more conventional treatments. You need to be sure that you are getting a balanced and reasoned opinion. Sadly, it is not unusual for a doctor to write off a treatment approach while having absolutely no knowledge of what it’s about. Conversely, some alternative doctors may be overly dismissive of the value of conventional medical treatment. In this case, arrange to speak to an integrated medicine doctor who is genuinely committed to getting you the very best of both worlds – orthodox and alternative.
Discussing complementary and alternative options
While your doctor may be happy to discuss various orthodox treatments, a frequently different reaction may appear when you bring up the subject of integrating alternative treatments with what he has to offer.
Ideally, your doctor will be receptive and open to what you want to consider. If he has no knowledge of a particular treatment or approach, he should welcome any information you can supply him and study it. He can then consider whether there are any contraindications to using it alongside orthodox treatments, and he can engage in an informed discussion with you about formulating a treatment plan which best meets all of your needs.
However, this scenario is not typical of what happens to the majority of people who try to discuss integrating their cancer treatments with their doctors. You may encounter a number of reactions, ranging from dismissal to an outright declaration that what you are considering is rubbish and a waste of money. So, you need to be prepared with the right attitude to achieve the best possible working relationship on this matter.
Attend the appointment armed with as much information and research evidence about the treatments you are considering as possible. If your doctor dismisses the treatments out of hand, ask him:
• How much does he actually know about the treatment?
• On what evidence is he basing his opinion?
If your doctor has little knowledge of the treatment, offer him the information so that he can give you an informed opinion. If he offers you a sound reason why he considers your proposed treatments unsuitable for you, or has reason to doubt the reliability of the treatment or practitioner, that may be information you need to know. If, however, your doctor displays pure prejudice, then you have to consider whether this particular doctor is going to be the best person for you to work with.
The words ‘working with’ are key here. If you feel you are unlikely to develop a partnership with your doctor without feeling compromised, then you might want to think about changing to a team that will better fit your needs. Though this may seem drastic and difficult to consider when feeling under pressure, bear in mind how important it is that, in the long term, you are involved in your own decision-making process, that your opinion is listened to and that you are ‘choosing your treatment’, not being ‘given it’.
In summary, when diagnosed with cancer and evaluating treatment options:
• Get the facts about your illness
• Make a list of questions you want answered (see Chapter 3)
• Ask to see the consultant (rather than the juniors) responsible for your care
• Do not be afraid to ask anything, but let your team know how much you want to know
• Insist on being told the truth
• Make sure you know what alternative and complementary approaches are available
• Take a relative or close friend with you to make notes (or take a cassette recorder, although this might be intimidating for medical staff and often means that their answers will be far more guarded)
• Discuss any queries with your GP
• If you are not happy about any aspect of your care, tell your doctors or the cancer services manager of the unit where you are being treated
• Talk to nurses, radiographers and pharmacists, who are often useful sources of information and have more time to explain things that you may not have understood in the short time spent with the doctor