The Cancer Directory

Reviewing what the complementary medicine and self-help approaches have to offer is the subject of Chapters 7 and 8.

Making Treatment Decisions and Creating an Integrated Medicine Plan

Chapters 4 and 5 will tell you about the treatment choices that are available, and Chapter 6 offers a checklist to go through to make sure you are ready to make your final decision. Chapters 7 and 8 will help you to prepare for your treatment and find the relevant, effective complementary supportive care during treatment.

Once you are clear as to the choices you wish to make, it is wise to draw up your plan of action so that you remain crystal-clear about what you are going to do, how you are going to do it and with what support. If you need help in doing this, or a short cut, then seek specific guidance from an integrated medicine doctor (see the Resources Directory) to devise a medically supervised programme that is tailor-made for you and your needs.

If you choose to receive neither orthodox nor alternative medicine, you should proceed straight to Chapter 9 on the long-term health creation approach to recovery.

Meanwhile, if you are looking for creative solutions to help with troublesome symptoms, they can be found in Chapter 8.

CHAPTER 4 The medical frontier: getting the best orthodox treatment

The oncologist’s perspective by Professor Karol Sikora with cancer nurse Patricia Peat

This chapter covers the current best practices available at the most advanced treatment centres, giving you a benchmark against which to measure the treatment you are being offered locally. This information will enable you to check worldwide for the very best resources and treatments available for your individual situation. Advice will be given on how to obtain second and third opinions as and when necessary.

In the last 20 years, there have been dramatic strides in our understanding of what cancer is and how best to treat it. Some cancers that were almost uniformly fatal in the past, such as Hodgkin’s disease and testicular cancer, are now mostly curable, thanks to chemotherapy. We are more open about the diagnosis of cancer in society and there is much media interest in cancer stories – good and bad. We are also living longer, which means that, as cancer is more common in older people (due to the declining effectiveness of the immune system, and longer exposure to poor dietary habits and environmental pollutants), the incidence of the disease is increasing.

Above all, we have managed to break some of the taboos that surround cancer so that the diagnosis is now usually acknowledged between doctor and patient, family and friends. This new frankness means that the need for information has never been greater.

Consumerism is hitting healthcare in a big way and, if used correctly, can change for better the way in which we obtain care. But, to avoid tilting at windmills, it is essential that you arm yourself with facts. To this end, we offer you here an unbiased guide to the world of cancer and its treatment to help you find the combination of orthodox and complementary medicine that will provide you with the best springboard to deal with your situation.

Nevertheless, on a cautionary note, please remember that with all forms of research the end results cannot be guaranteed. So, some of the areas being currently researched or developed and included in this chapter may not ultimately become available treatments. To confirm what really is available now, the major cancer information services listed in the Resources Directory (pages 257–63) can give you up-to-date information on all orthodox treatments, surgical procedures and clinical-trial availability to help you assess the potential effectiveness of any treatments you have been offered.

But first, let us go back to the beginning of the story and think more about the nature of cancer so that the modes of treatment can be better understood.

What Is Cancer?

The cancer cell

To understand cancer, we need to think about the construction of the body. About one thousand billion cells are needed to make a person. Each cell carries information on how to function from the time it is developed till the time it is supposed to die. Depending on where it is situated in the body, the cells of different tissues are specialized to have different functions. A muscle cell has tiny molecular ropes that allow it to contract, so pulling other structures to cause a movement. A skin cell has a tough waterproof coat to protect us from the environment, while a liver cell is a chemical refinery that is continuously clearing the blood of potential poisons.

All organisms, including man, grow from a single cell that splits into two in a process called ‘mitosis’. In health, the two new cells are identical to the one they came from. These two daughter cells then divide to form four cells, then eight, and so on. In most people, the cells work in perfect harmony, but sometimes they go wrong. If a cell dies, then one of its many identical kin takes over its job.

But if a cell starts to grow and divide in an abnormal way, problems may arise. The information carried in the cell’s DNA, the thread of life, becomes altered, forming an abnormal cell with abnormal growth patterns. This is called ‘malignant transformation’ and is the first change towards cancer. The abnormal cell continues to grow, but does not mature properly, and has characteristics that differ from its healthy parent cell. As this cell reproduces, over time, each new generation of cells becomes a little less like the cell it originated from and, thus, less effective at performing its designated tasks. Cancer cells can develop because the DNA in the cell nucleus has been damaged by either radiation, chemical toxins or viral infection. This is more likely to happen in tissues that are inflamed and poorly nourished due to a low blood and oxygen supply.

Characteristics that distinguish a normal cell from a cancer cell

Cell Recognition

A normal cell recognizes its borders. It sees other cells next to it, but knows it is not supposed to invade and spread into their territory. A cancer cell lacks this information and will invade the surrounding tissues.

Immune Attack

In health, when a cell becomes abnormal due to infection or cancer, the immune system recognizes its abnormality and destroys it. When cancer develops, the ability of immune cells to recognize the abnormality is lost, thereby allowing the abnormal cells to carry on growing unchecked.

Staying in Place

A normal cell knows where it should be, and stays there until it dies, when another cell takes its place. It does this by sticking to the cells surrounding it. A cancer cell loses this ‘stickiness’ and breaks away from its surroundings to be transported via various body systems to other organs, where it takes up residence and starts to divide and grow into a new tumour. This is known as ‘metastatic spread’, or the development of a secondary cancer.

Metastatic spread

With different types of cancer, there are differences in how quickly metastatic spread can take place. But it also depends on the individual who has it (more about this later).

There are two types of tumour – benign or malignant. Benign tumours are usually localized and do not spread. They are often enclosed in a clear capsule – a rim of normal tissue – which demarcates the limits of the abnormal cells. These tumours may be detected because, as they grow, they press on other structures in the body such as blood vessels or the intestines. In contrast, malignant tumours are virtually never encapsulated, but erode adjacent tissues by extending crab-like infiltrations in the body in all directions.

Most cancers do not spread completely haphazardly – certain tumours have favoured sites of metastases. Prostate cancer, for example, tends to spread to the bones, often the spine or pelvis. Breast cancer usually goes first to the lymph nodes, but then favours the liver, bones and lungs. Colon cancer spreads first to the liver, following the blood flow from the colon to the liver.

Cancer cells produce chemical factors that enable them to grow as a group, and we are only just beginning to understand the growth factors involved in sustaining cancer cell growth. In future, we may be able to devise anti-cancer drugs that can block these growth factors.

Classifying cancer

Cancer can strike any organ of the body, each with its own pattern of behaviour. There are currently 208 classifiable sites at which cancers arise, and many of these are broken down into further subtypes. This reflects the many different cell types that make up the human body, many of which can grow out of control.

Tumours are named according to the site at which they originate, not by the organs they spread to. For example, a patient with breast cancer that has spread through the bloodstream to the liver is said to have metastatic breast cancer. If it then spreads to the bone, it is still breast cancer, but metastasized to bone. On the other hand, it is possible to have a primary bone or liver cancer, which has arisen in these tissues and metastasized elsewhere. This may cause confusion because of poor communication in rushed clinics.

Tumours are also named to reflect the type of structure from which they have come. A carcinoma, for example, comes from cells lining body cavities called ‘epithelial cells’. Such cells are found in the lungs, colon, breast and prostate gland. Carcinomas are by far the most common type of cancer. Tumours derived from the body’s structural tissues, muscles, tendons, bones and cartilage are called ‘sarcomas’. Those arising from the lymphatic system are called ‘lymphomas’, and cancers of the white blood cells and bone marrow are known as ‘leukaemias’.

If you ever hear any terms used to refer to your particular cancer which you do not understand, ask for an explanation. Cancer classification is complicated, and there are often several words that mean much the same thing. If you don’t understand a term, don’t go away feeling too embarrassed to ask what it means – check it out and save yourself unnecessary stress.

Diagnosing Cancer

How is a cancer diagnosis usually made?

The only way to diagnose cancer definitively is to test a sample of abnormal cells from the site of the tumour. The usual way of doing this is to obtain a biopsy, or a small tissue sample, under either a local or general anaesthetic, depending on the site of the tumour.

Cancer has no specific symptoms – it depends on where the tumour is, how big it is, which structure it is invading and whether it has spread to other parts of the body. A patient with lung cancer, for example, may have a cough with or without blood or phlegm, or a persistent chest infection that does not respond to antibiotics. The usual symptom of breast cancer is a lump in the breast, although it may well have spread by the time it can be detected this way. If it has spread, then its symptoms will depend on the site of the metastases – in the lungs, it may mimic a lung tumour; in the liver, a liver tumour, and so on.

Because cancer produces so many different types of symptoms which can be mistaken for minor illnesses, there may be a period of several weeks with repeated visits to the GP before the symptoms are taken seriously. The best rule of thumb is that any progressing symptom that does not disappear after two to four weeks should be further investigated. Usually, this involves being referred to a hospital where the investigations can be done rapidly.

If cancer is suspected, there are two important requirements: to do a biopsy to find out exactly what type of cells have gone wrong and, therefore, how best to treat them; and to ‘stage’ the disease to find out how far the disease has spread as this, too, dramatically affects not only the optimal treatment, but also the likely outcome.

The tests to determine the site and stage of the cancer include:

• Biopsy, to study a piece of tissue thought to be cancerous – the definitive way to make the diagnosis

• Blood tests, to check for anaemia, bone-marrow function, liver and kidney function, and search for tumour markers – substances produced by cancer cells and detectable in the blood, thereby alerting doctors to the presence or spread of cancer

• Plain X-rays, to provide information about various parts of the body

• Contrast X-rays, injecting or ingesting a radiopaque substance to increase what can be seen on the X-ray

• CT (computed tomography) scans, to provide detailed information about the structure of various internal organs

• MRI (magnetic resonance imaging), a powerful imaging technique based on magnetic field shifts in the body

• Bone and liver scans, to show areas of dysfunction in the bone and the liver that may be due to the spread of a cancer.

Staging

Determining how far a cancer has spread is a critical starting point before deciding on treatment. There are several systems available and this often causes confusion, even among doctors.

One of the most commonly used staging systems is the TNM system, developed by a committee of the International Union Against Cancer. Here, the letter T stands for ‘tumour’, with T1 referring to a small tumour and T4 referring to a very large one.

The N stands for ‘nodes’, the lymph nodes draining the organ in which the tumour is found. Enlarged nodes containing growing tumours are classified as N1 or N2 depending on their site and number.

The M stands for ‘metastasis’ (spread) and is either present (M1) or absent (M0).

Other staging systems are often simpler. Early-stage disease may be called stage 1 whereas late-stage disease, or more advanced cancer, is then stage 4. Different criteria may be used for cancer at different sites of the body, so ask your consultant to explain exactly what the staging means for your type of cancer. A person with disease that has not spread is likely to have a better outcome than a patient whose disease has already left its primary site. This is because a localized tumour is more likely to be cured or removed altogether by either surgery or radiotherapy.

Grading

The grade of a cancer, determined by the pathologist by looking at the cancer cells through a microscope, is also useful in predicting the outcome of a cancer. A high-grade tumour contains very abnormal cells, which have mutated greatly, grown rapidly and often spread throughout the body. This is also referred to as ‘poorly differentiated’. At the other end of the spectrum are low-grade tumours, which can look similar to the tissue from which they have been derived and are referred to as ‘well differentiated’. Such tumours grow more slowly and are less likely to spread quickly. The outlook is usually better for low-grade tumours, but there is a paradox. High-grade aggressive tumours are often more sensitive to chemotherapy as the chemicals work best against the most rapidly dividing cells in the body. Unfortunately though, rapidly growing cells can continue to evolve and can become resistant to specific drugs rather rapidly, too.

It is also possible to have varying opinions as to the grade of a tumour among pathologists. So, if you are in any doubt, or the pathology seems uncertain, ask for a second opinion from another pathologist.

Secondary cancer

Cancer that develops in the body away from the site of the original tumour is called a ‘secondary cancer’ or a metastasis. These may be found at the time of diagnosis or they may develop later on. If secondaries appear, it can often be a more severe blow than the original diagnosis.

Cancer can spread around the body by:

• invading local tissues

• entering the lymphatic system and lymph nodes

• entering the bloodstream and travelling to distant sites

• direct infiltration of a neighbouring organ.

Some cancers have a predictable route of spread and favour certain organs for secondaries whereas others are more unpredictable.

Assessing your situation

Working out the chances of your treatment being successful is difficult because the response to treatment varies considerably from one person to another. However, the three essentials that guide your outcome are the:

• primary site of the tumour

• stage of the tumour

• grade of the tumour.

Another important piece of information is how you respond to treatment. There are four types of response and you will hear the following terms being used:

• A ‘complete response’ is where the tumour has disappeared completely

• A ‘partial response’ is where it has shrunk to half its size, as visualized by X-rays or some other quantifiable measure

• ‘Stable disease’ means that the disease is not growing

• ‘Progressive disease’ means that growth is continuing despite treatment.

Following surgery, if the primary tumour has been completely removed, then technically the patient has had a complete response. With chemotherapy, it is vital to assess response early on in the course of treatment to make sure there will be benefit and that it is worthwhile to continue the treatment.

Choosing Your Cancer Treatment

Cancer statistics

The best way to assess the cure rate for a particular type of cancer is to look at survival curves compared with those who do not have cancer. If 100 patients with lung cancer are treated and we look at their survival curve, it will be clear that they do less well than those of the same age without lung cancer. The definition of ‘cure’ means that the survival rate of a treated group of patients is the same as those of similar age and gender who did not have cancer.

Getting information about your cancer

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.

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: