The Cancer Directory
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• As the tumour grows, it may begin to invade the local blood and lymphatic vessels. At this point, cells may break off from the main tumour and travel to nearby lymph nodes, which may also become swollen because of the cancerous tissue that starts to grow in them. From there, the cancer may travel even further afield through the bloodstream or lymphatic vessels to distant sites in the body. There are certain preferred sites where these cells will become lodged, leading to a possible secondary cancer, or metastases, to start growing – for example, breast cancer secondaries can show up in the bones, lungs, liver or brain.
When a doctor is initially assessing the cancer, he will try to establish:
• the histology or type of the tumour – the cell type of origin of the cancer
• the grade or degree of aggressiveness of the tumour
• the stage of the disease – whether the tumour is still at its primary site or whether it has spread locally from the tissue of origin to nearby lymph nodes or even further afield to form secondaries or metastases
• whether there are any special markers (such as blood tests) by which its progress can be measured, or unique characteristics, such as being hormone-positive.
For most tumours, stage one means there is a primary only; stage two means the primary has begun to invade the blood vessels locally; stage three means that the tumour has spread to nearby lymph nodes; and stage four means that it has metastasized throughout the body. These stagings will differ somewhat from one type of cancer to another.
To diagnose and grade the tumour, the specialist will take a sample of the tumour tissue, usually by taking a biopsy. The tissue sample is then studied under the microscope to determine just how aggressive the cells are, and the results will appear on a histology, pathology or histopathology report. Cancer cells are described as well differentiated if they still closely resemble the cell of origin – in other words, a well-differentiated cancer of the breast will contain cells easily recognized as having originally arisen from breast tissue. Because the cells are also still similar in nature to normal breast tissue cells, the tumour would also be described as slow-growing and low-grade.
At the other extreme, the tumour cells may be barely recognizable as breast tissue cells because they had become ‘wild’. Such cells would then be described as poorly differentiated, and the tumour as fast-growing or aggressive and high-grade. Again, the grading system varies with different types of cancer, but most tumours will be graded on a scale of one to four.
Staging the tumour means having further screening tests done after a positive biopsy. These may be blood tests, X-rays and/or ultrasound, CT (computed tomography) or MRI (magnetic resonance imaging) scans of the parts of the body to which the cancer may have spread. How much you wish to know will also affect how much screening you allow your doctors to do. Some consultants, on discovering a primary tumour, will leave no stone unturned in looking for possible secondaries. Other consultants take a much more passive view, waiting until there are symptoms before looking for the presence of metastases.
Generally speaking, there is not much point in undergoing extensive screening unless it will potentially change the treatment being offered. For example, if the chemotherapy for a primary cancer is the same as for a similar cancer that has already spread, your consultant may not think it necessary to carry out widescale screening. But you may wish to know if there are secondaries, as this may significantly change your approach to the cancer and your life choices. So, you will need to be clear with your doctor as to just how far you want him to go with this process and how much information you wish to be given.
To get a clear picture of what you are dealing with, you need to find out:
• the type of cancer you have or its histology
• the stage of the cancer or how far it has spread
• the grade of the tumour or how aggressive it is
• the markers of your tumour by which the effectiveness of treatment or progress of the disease can be measured
• if the tumour is hormone-positive.
Once you have this information, you will then be armed, if you so choose, to go away and read about the cancer you have and discover the possible treatment options for your cancer type, stage and grade.
The exception is in the case of tumours of the blood cells. These are the leukaemias, in which there is no solid tumour because the cell that has grown out of control is one of the various types of white blood cells. The way this sort of tumour is diagnosed is by performing blood counts or looking at bone marrow. These tests might reveal that one cell type is growing very fast at the expense of other blood cells, the levels of which may be lower than normal. With leukaemias, classification is in terms of whether the illness is chronic (slow-growing) or acute (fast-growing).
Depending on how much information you wish to be given, you might ask your doctor for answers to some or all of the following questions:
IF YOU DO NOT WANT TO KNOW THE ANSWERS TO THESE QUESTIONS, TELL THE CONSULTANT AND GP WHAT YOU DO and DO NOT WANT TO KNOW.
• What type of primary cancer do I have (or what is the histology of the tumour)?
• How large is the primary site?
• Has it spread to the lymph nodes draining the site from which it has arisen?
• Has it spread elsewhere in the body, and what is its stage (1, 2, 3 or 4) (or how far has the tumour spread)?
• What is the ‘grade’ or degree of aggressiveness of the tumour?
• Are there other prognostic indications from the pathologist?
• Is the cancer hormone-receptor-positive? If so, to what hormones is the tumour sensitive?
• Are there any blood markers by which the growth or shrinkage of the tumour can be measured?
• To which parts of my body might this type of tumour spread?
• Would it be advisable for me to be screened thoroughly for secondary cancer?
• If secondary cancers were found on screening, how would this affect the choice of treatment I am being offered?
• In the case of leukaemia, is it acute or chronic?
• Left untreated, what is the usual course of events with this type of cancer?
• What is the prognosis (or average survival time) with this cancer if medically treated?
Finding out more about your cancer
When you have found out the type, stage and grade of your cancer from your consultant or GP, you may wish to gather more information before making any decisions about medical, complementary and alternative medicine approaches to treatment.
It is best to think a bit about how and where you should look before you embark on this process. Information about cancer is divided into two main categories – what has been written for people with cancer; and what has been written for doctors, nurses or other healthcare professionals.
In the former, the medical and scientific jargon will have been translated into plain English and (hopefully) it will have been written with consideration of your feelings. In contrast, the latter information will have been written for those with an understanding of science who only need to know the facts – and is likely to be very blunt.
It is important now that you do not become overwhelmed with information and, even more essential, that you do not become overly depressed by what you read. Your approach will therefore depend on your personality, and how much information you can take and in what form. A helpful source of information on cancer for those who have cancer is CancerBACUP. As well as a full range of informative leaflets about every type of cancer, they also have a nurse ‘phone-in’ service to answer your specific questions about your situation. For medical and scientific information, there is the Internet and medical libraries. However, people often complain that the Internet can lead to information overload, and that the information gleaned from medical libraries is often non-user friendly.
Other sources of information are the big cancer-research institutes such as:
• Cancer Research UK
• National Cancer Institute USA
• The American Cancer Society
• The Royal Marsden Hospital, London
• Memorial Sloane-Kettering Cancer Hospital, New York
• University of Texas MD Anderson Cancer Center, Houston.
Going to the Frontier with the Internet
Useful websites for more information about orthodox cancer medicine include:
www.cancerbacup.org.uk: The best UK information site on all aspects of cancer with good links to other sites
www.cancer.gov: The largest cancer website in the world, belonging to the US National Cancer Institute in Washington
www.oncolink.org: The excellent site of the University of Pennsylvania Cancer Center with good links to other US sites
www.oncology.com: The website of the American Society of Clinical Oncology, where treatment protocols and drugs are well explained
www.cancerhelp.org.uk: Smaller, manageable site from the University of Birmingham
www.cancerresearchuk.org.uk: Britain’s cancer research charities site
www.macmillan.org.uk: Site of the Macmillan Fund, with useful contacts especially for support groups and palliative care
www.cancereurope.com: The European School of Oncology site, with good links to other cancer sites in the EU.
Look in Chapter 4 for more cancer-treatment information, and in Part 2 of this Directory for useful websites and contact details of those offering helpful cancer information.
If you would like to speak to a doctor in more detail about your cancer, you may be able to get help from the pathology department of the hospital that diagnosed your tissue samples. Pathology departments have doctors called ‘pathologists’, whose job it is to understand the course that specific diseases tend to follow. Because pathologists do not see many patients, they usually have quite a lot of patience. You may find that one of these doctors is willing to come to the phone, if you ring the pathology department, and tell you in detail about the nature of your tumour and its likely behaviour in the future. Of course, it is possible that all this information will simply raise more questions than it answers, so it is perfectly appropriate that, having gathered your information, you go back to your consultant and/or GP to ask your next round of questions.
If you would like a broader integrated medicine perspective, this may also be the time to seek the advice and help of an integrated medicine doctor (see the Resources Directory).
Knowing when to stop
It is important to know when to stop with this process of seeking information about your cancer so that you do not become overly preoccupied with reading more and more about your condition. As soon as you feel satisfied that you have a reasonable grasp of the situation, it is time to move on to making your treatment decisions.
Understanding the medical approach to cancer
Once you know about your cancer and have assessed your situation and the level of risk, you can consider the treatment options.
Generally speaking, the aim of cancer doctors is to attempt to remove the primary tumour before it has spread, then to destroy any stray cells around the site of the primary with radiotherapy, or more distantly spread cells with chemotherapy. With blood cancers, attempts are made to destroy the cancer cells in the blood with chemotherapy and then to remove the abnormal parent cancer cells from the bone marrow, replacing them with healthy cells. This involves bone marrow grafts, which use healthy new marrow from a donor after the patient’s unhealthy bone marrow is destroyed.
Nowadays, cancer treatments tend to be more aggressive, offering the whole gamut of surgery, radiotherapy and chemotherapy right from the start of the treatment process. In the 1970s and 1980s, it was more usual to treat the primary tumour only, saving radio-and chemotherapy for recurrences. However, the thinking these days is that it is better to go for complete eradication or cure from the outset rather than allowing the cancer to become established in the body.
Because doctors want to ‘nip cancer in the bud’ as soon as it has been diagnosed, there is often an enormous sense of rush and panic at the time of diagnosis. And being on the receiving end of this can be traumatic. While you are still reeling from the news and going through an emotional reaction, those around you are busy trying to get on with starting your treatment. So again, it should be stressed how important it is that you slow them down until you have made the right choice for you and are ready to undergo your well-considered treatment.
On occasions, you may be advised to have chemotherapy first to shrink and contain the primary tumour before attempting to remove it surgically. Sometimes, the primary or secondary tumours may be deemed inoperable – in which case, the treatment offered is usually chemotherapy. If the tumour is widespread throughout the body, the treatment given may be palliative – intended to deal with the symptoms rather than cure the disease. This usually amounts to shrinking the tumour with radio-or chemotherapy to buy vital time for you to get your own integrated health creation programme together.
When thinking about treatment, the following are the questions you need to ask:
• What treatments are suggested for my cancer and why?
• What are the chances of the tumour being cured?
• What are the side-effects of treatment in the short and long term?
• What are the risks of treatment?
• Do I trust my cancer consultant or do I need to seek a second opinion?
• Is my hospital able to give me access to the most up-to-date treatment for my type of cancer, or should I be looking further afield?
• Which are the centres of excellence for my particular kind of cancer nationally and internationally?
• Are there treatment research trials going on for my kind of cancer and, if so, would I like to be entered into one of those trials?
• Do I want to go straight into medical treatment of my cancer or do I need time to prepare myself mentally, physically and practically first?
• If the results with conventional medical treatment are not likely to be good, do I want to keep medical treatment on hold as an option while I work entirely on improving my health with alternative cancer treatments and holistic health promotion?
• If I wish to defer treatment while trying to work with natural methods, am I sure that I am not putting myself at undue risk in doing so?
• You may also wish to ask: If the tumour cannot be cured, what is the likely progression of the disease and my life expectancy?
Specialists who look after people with cancer
There are four different types of specialists who look after people with cancer:
• surgeons, who are usually the first to be consulted if there are primary or secondary tumours that are removable (but who are not necessarily cancer specialists)
• medical oncologists, who specialize in the treatment of cancer with chemotherapy and/or radiotherapy
• palliative care physicians, whose role is to help manage your symptoms, and arrange for your support and care
• anaesthetists, who can offer specialist help if there is a problem with severe, ongoing pain.
It varies from place to place whether you see an oncologist or surgeon first, but it is wise to make sure you do see an oncologist at some point because they are specialists in cancer and its treatment. Ask your GP whether there are any other relevant specialists who may be able to help you.
Getting more details
When your specialists tell you about your treatment options, it is important to establish the details of the proposed treatment so that you can make an informed decision.
As you focus on a particular treatment as the most likely one for you, make sure to ask the following questions:
• What will the treatment involve?
• When and where will it take place?
• Who will be responsible for my treatment?
• How long will it continue for?
• How will it make me feel?
• How long should I take off work for treatment and convalescence afterwards?
• What side-effects can it cause?
• How long will it take me to get over these side-effects?
• Will these side-effects be permanent or temporary?
• What are the benefits of the treatment in terms of prolonged survival, symptom improvement or disease-free interval (the time you can expect to enjoy with no problems from the cancer)?
• Are there any extra (adjuvant) treatments that might further improve my well-being or chances of survival while having this treatment?
• Does the doctor see any problem with my taking vitamin/mineral supplements alongside the treatment (making sure his or her opinion is a well-informed one)?
• Does the doctor know of any promising ‘medical frontier’ treatments or trials that might offer a better chance of prolonged survival than the treatment I am being offered and, if so, where are these treatments available and at what cost?
Once you are in possession of this information, you will be able to decide whether the side-effects (temporary and permanent) of the treatment outweigh the possible benefits you may receive in terms of symptom improvement and life expectation.
You may find this in-depth questioning of your doctors too difficult to go through. Some people do not want to know exactly where cancer is in their bodies if it is not causing problems nor do they want to pin their doctors down to telling them the exact facts about the effectiveness of the treatments being offered, as this may inhibit their being able to put 100 per cent of their faith in the treatment.
However, I would strongly recommend that, at the very least, you get a clear diagnosis of the primary tumour so that you are certain that you do have cancer, and get some indication of how serious your situation may be. In this way, you can make an informed decision about whether to go ahead with conventional treatment or not with an assessment of the risks involved if you do not feel able to undergo medical treatment.
Thinking about Timing
Next, think about the timing of your treatment. Ask yourself:
• Do I want to go straight into medical treatment for my cancer, or do I need a little time to prepare myself mentally, physically and practically first?
Take the time you need to get yourself in the right frame of mind for treatment. Preparing properly for treatment is covered in detail in Chapter 7.
Understanding the treatment offered
Before you commit to a particular treatment, be sure you understand both the benefits and side-effects that you may experience.
Quite often, because people are so anxious about what the treatment will do in the short term, they do not really hear or take on board what is being said about long-term side-effects. For example, a woman asking about chemotherapy treatment may be thinking about its effects on her hair, nails and energy levels, and whether she will be able to work and look after her children. She may completely miss the fact that, in the longer term, the chemo could cause infertility, depression or nerve damage.
While thinking about the possibility that tamoxifen treatment for breast cancer may cause weight gain, a woman may miss the point that it also carries a 5–10 per cent risk of causing endometrial cancer. Clearly, doctors and other healthcare professionals do not like to dwell on the downsides of treatment but, as mentioned earlier, it is better to be aware of and prepared for the worst-case scenario than having it sprung on you at a later date, facing you with a new set of losses and fears. It may be worthwhile having two separate discussions with your doctors or nurses – one about the short-term effects of the treatment and a blow-by-blow account of receiving the treatment; and another about the possible or likely long-term side-effects of the treatment.
A useful source of information about drug treatments is the drug information centre found in most big hospitals. This is usually staffed by helpful pharmacists, who will take the time to answer your questions or send you printed material about the medicines you are being offered. Pharmacists are far more knowledgeable about drugs and treatments than doctors and other healthcare professionals, and will have detailed information sheets and research data for each medicine being offered at their fingertips. If you do not have access to a big hospital, you can still speak to the pharmacist responsible for the oncology ward who will often be only too pleased to share his or her knowledge and experience with you.
Learning more about the proposed treatment
Make sure that you are asking the right person about the nature of the treatment – the consultant or nurses involved with each aspect of your treatment – and about any relevant details, be it surgery, chemotherapy, radiotherapy or hormone therapy (or any other forms of treatment on offer).
It is then wise to ask yourself if you are satisfied with the information that you have been given, or do you feel the need to seek a second opinion?
Reviewing Your Options
When reviewing your options for treatment and before you make your treatment decision, make sure you have collected together all the relevant information by going through the checklist below.
• Options on offer at the hospital in your area
• Range of options on offer at the leading centre of excellence for your particular cancer
• Options that might be available in other parts of the world
• Research trial alternatives
• Alternative cancer medicine choices
• Your integrated medicine complementary and self-help options.
Hopefully, all this information has given you clear guidance on how to find what options are available at your hospital, including getting the opinions of the different specialists mentioned, where appropriate.
If you would like an opinion from a centre of excellence, you need a referral from your GP or consultant. In the UK, it is usually possible to get such an opinion on the NHS if it is clear that the services offered by such a centre are more comprehensive than what is available in your own area. If you have health insurance, check first that your policy covers you for second or third opinions. Treatments in another country are unlikely to be covered by your health insurance, and you should check costs carefully before embarking on this route.