The Cancer Directory

A cancer question checklist

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.

Getting a second opinion

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.

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

• If you are unsure about what to do, ask to see the consultant again or seek a second or third opinion

• Take steps to prepare and support yourself and your immune system throughout your treatment programme (see Chapter 7).

Current Medical Treatments

The main treatments used currently for cancer are:

• surgery

• radiotherapy

• chemotherapy

• hormone therapy.

Surgery

Often, the first step in cancer treatment is surgery. The aim of cancer surgery is to remove the whole tumour, leaving behind as much of the normal tissue as possible. The tumour must be removed in its entirety for the operation to be a success and the pathology department must find that there are clear margins of healthy tissue around the entire tumour. If not, then further surgery will usually be recommended.

You may have heard that operating on a tumour can encourage it to spread. That is a consideration your surgeon will take into account, and great care will be taken to minimize the risk of spread during surgery. If your surgeon thinks this might have occurred, he may well recommend that you have follow-up systemic treatment, such as chemotherapy, to take care of it.

Both orthodox and integrated cancer doctors agree that the risk of cancer spreading during surgery is far outweighed by the risk of leaving the tumour to continue to grow, metastasize and cause further problems. New evidence also shows that existing tumours secrete proteins that can facilitate secondary growth in other organs. So, the removal of all possible cancer from the body is vital.

Success with cancer surgery comes from knowing exactly how much tissue needs to be removed, so an accurate assessment of tumour size and shape is essential before deciding on the type of operation for your particular type of cancer.

Cancer Surgery: The Key Issues

• Find out what sort of operation is being proposed.

• Establish how experienced and skilled at this type of surgery your surgeon is.

• Find out if there are any new developments in surgery for that operation.

• Find out how long you will need to be in hospital and need to take off work afterwards.

• If you are having surgery done privately, make sure you know all the costs involved.

• If you have health insurance, make sure in advance that all the fees will be covered.

• Do not sign the consent form to surgery unless you fully understand what is being proposed and the potential long-term side-effects.

• Make sure you are prepared physically, psychologically and practically before you undergo the operation (see Chapter 7).

If you are told your tumour is inoperable, you should certainly consider getting a second or even a third opinion. There may be a great variance in opinion, depending on the particular surgeon’s skill and experience, and certain hospitals specialize in certain types of cancer. You may find a surgeon who is specialized in your particular type of cancer and is highly skilled in removing difficult tumours. For example, some neurologists will operate to remove bony secondary tumours from the spine and reconstruct the vertebra using a titanium prosthesis whereas, in other places, only radiotherapy is on offer. Your scans and X-rays can also be sent to specialists in other countries for their opinion of the possible surgical help for more complex tumours.

Following Surgery

If your tumour has been completely removed and no spreading to other tissues is detected, you may not need follow-up treatment. However, you will usually be offered either or both radiotherapy and chemotherapy, as well as hormone therapy if your tumour is hormone-dependent.

Radiotherapy

Radiotherapy uses ionizing radiation in the form of X-rays to treat cancer. Wilhem Roentgen discovered X-rays in 1895. Within a year, they were being used in the treatment of cancer. We have come a long way since then, and radiotherapy for cancer treatment is now incredibly sophisticated. Often, radiotherapy is given to effect a complete cure – called radical radiotherapy. Alternatively, it can be used after surgery to ‘mop up’ any stray cancer cells persisting around the operation site. Another important use of radiotherapy is for symptom control in palliative care.

Types of Radiotherapy

The most common type of radiotherapy is the use of an external radiation source produced by a linear accelerator, a large machine that delivers a precise dose of radiation to a particular site of the body. An alternative form uses internal radiation, where a radioactive source – such as radioactive needles or ‘seeds’ – is temporarily placed in the part of the body affected by tumour, such as the womb or prostate gland.

Different types of X-rays are used as each has a different level of penetration. Laboratory evidence tells us that radiotherapy works by damaging DNA in the nucleus of rapidly dividing cells. The DNA molecule has a particular sequence, creating a vital code for proteins that have important functions both inside and outside the cell. Radiation breaks the ‘backbone’ of the DNA molecule so that, when the strands join back together, the coding sequence is altered, resulting in the cell’s death. It only affects cells that are reproducing, which is why radiotherapy is given in multiple doses – to catch the cells at different phases of their growth cycle.

Radiotherapy damages cancer cells whereas normal tissue is usually able to repair itself. We have learned how to exploit this difference, and establish a balance between destroying cancer cells while causing minimal damage to normal tissues. Also, the delivery systems for radiation are now so precise that it is almost possible to irradiate only the tumour. However, if the individual survives for some time after radiotherapy, it is possible for a new, different second cancer to arise as a result of the radiotherapy treatment.

The Radiotherapy Process

A consultant radiotherapist will be in charge of your radiotherapy treatment and will help with decision-making. So, discuss any problems or questions you have with him. When receiving radiotherapy, the radiographers who deliver the treatment will see you on a daily basis. They are an excellent source of information and can often be far more helpful than the consultant. Despite a lot of adverse publicity, radiotherapy is a remarkably safe form of treatment. There are clear guidelines for the calibration of the machines, and it is a legal requirement that the machines be frequently checked.

Having decided on radiotherapy, the next part of the process is the planning. This is usually done on a machine called a ‘simulator’, which simulates your treatment on the X-ray therapy machine to set up the exact position of the intended treatment. The area to be treated is marked on your skin with an indelible pen so that the markings last throughout the treatment period. However, if the areas are complicated or where marks are unsightly or less likely to stay put, a perspex shell can be contoured to fit your body precisely and act as a marker. This shell can also prevent even the slightest movement during treatment so that the X-ray beam only strikes those tissues it is supposed to hit. If intended for the head, holes are cut out of the shell to leave your eyes, nose and mouth uncovered.

As no two individuals are the same, do not be alarmed if you compare notes with others and find that your radiotherapy is different from theirs. There are all sorts of reasons for this. If you are at all worried, question the radiographers during one of your visits or ask to see the consultant oncologist who has planned your treatment.

Different centres may use different machines, with larger centres having a wider choice for more specialized treatments. But it may be appropriate to be treated at a small centre nearer home to cut down on the hours spent travelling to and from the hospital each day. Once again, a relative-benefit evaluation needs to be done, involving both you and your doctor.

If the most important aspect of treatment is the cosmetic result, then this may necessitate a lengthier treatment using a relatively lower dose to avoid long-term skin damage from the radiation. However, if the final appearance is not of concern and the area being treated is very small, it may be possible to have a shorter course of radiotherapy using a higher dose. Radiotherapy treatment is flexible, and it is important that the patient makes his needs apparent at the outset so that the consultant can tailor the treatment appropriately.

New research by Professor Kedar N. Prasad in the US has shown that, far from potentially diminishing the effectiveness of chemo-and radiotherapy, high-dose vitamin and mineral therapy can potentiate both forms of treatment. This is because the abnormal tumour cells become more vulnerable after having taken up high levels of antioxidants (see Chapter 5).

Side-effects of Radiotherapy

A full description of remedies to reduce the side-effects of radiotherapy are found in Chapter 7.

Fatigue and Nausea

One side-effect that many people experience during their radiotherapy treatment is general fatigue and nausea. This is thought to be due to:

• your body having to work harder as cells are destroyed

• the toxicity of the radiation

• the disruption to your body’s natural energy fields.

So, you should not be at all surprised if you need an extra two or three hours of sleep every day, and spiritual healing to lift your energy and spirits. See Chapter 7 for ways to help your body cope with this treatment with the help of homoeopathic remedies and acupuncture, which releases the stored heat and energy radiotherapy causes.

Nausea may be experienced at the beginning of treatment, but this should gradually improve with time. This may occur especially when a large part of the body is being treated, and is particularly common during radiotherapy to the abdomen, although it may also arise when having treatment to nearby areas.

Skin Burns

With skin cancer, the area being treated is likely to be affected by the radiation, leaving your skin red and sore, rather like sunburn, towards the end of treatment. (Again, for information on helpful radiation cream, see Chapter 7.) Individuals vary in their sensitivity to radiation. The same dose may produce a severe skin reaction in one person and only a mild reaction in another. As a rule, symptoms are worse towards the end of treatment, often reaching a peak after four or five weeks.

Difficulties with Eating and Drinking

If treatment affects your oesophagus or throat, you may find it becomes rather inflamed and sore. This is because radiotherapy initially causes an inflammatory reaction. You may have difficulty swallowing, and find eating and drinking painful. Discuss this with your doctor to try and prevent this as much as possible, as this problem is unpleasant and can make you feel miserable. A nutritional advisor would be helpful at this time for advice on suitable food, drinks and remedies, and also to support you if the going gets tough. Again, see Chapter 7 for any complementary therapies that may help. You may also experience diarrhoea if the bowel is irradiated.

Possible Flare-up of Symptoms

Because the effect of radiotherapy builds up over weeks and because the tissues being irradiated become inflamed, your initial symptoms may temporarily get worse before they get better. For example, if the problem is a bony secondary tumour pressing on a nerve, then, for up to six weeks post-treatment, the pain or nerve impairment may get worse. But as the inflammation subsides, relief will be experienced.

Infertility

Radiotherapy to the reproductive organs may affect your ability to have children. Some effects are transient and return to normal after a while, whereas others are permanent. If you are considering having children in the future, check with your doctor about the possible risks, and find out what steps can be taken to aid fertility in the future. For example, men may wish to have sperm frozen for use later or, for women, egg collection and later IVF (in vitro fertilization) may be considered.

Limitations of Radiotherapy

Tumours are given a dose of radiotherapy that is close to the maximum tolerated by the normal tissues in the area being treated. The risk of damage to normal tissue is the major factor limiting the dose of radiotherapy given. There is also an overall limit to how much radiation can be given to one area or the whole body.