Whatever means you use to control it, your pain will be more of a problem at some times than at others. It will probably seem much worse when you are bored, lonely, depressed, anxious, frightened, physically tired or lying awake at night (the worst)! On the other hand, your pain is likely to seem less of a problem when you are in comfortable surroundings, have pleasant company, are keeping your mind occupied, sleeping well at night and at peace with yourself and your situation.

*177/40/1*

*143/40/1*

This is a new branch of genetic counseling that determines a person’s susceptibility to cancer, or cancer risk; on the basis of analysis of disease in family members (lineages). While the technology for susceptibility testing is available in Australia, it is still regarded as a research tool and is considered only after appropriate genetic counselling.

What Are the Advantages of Susceptibility Testing?

There are important benefits to susceptibility testing:

•It provides new research data that will lead to a better understanding of cancer and to better treatments.

•It can help identify individuals who should take special precautions or be monitored more aggressively. For example, everyone should be screened routinely for colon cancer. The age at which screening begins, the frequency of screening, and the tests used to screen individuals will depend on their susceptibility to colon cancer. Those with higher susceptibility should be screened more often and more completely.

•It can reassure people who feared being at greater risk for certain cancer and are found to be at normal risk for that cancer.

What Are the Disadvantages of Susceptibility Testing?

Currently, there are a number of disadvantages to pursuing susceptibility testing:

• It can provide false reassurance that you are not at risk. Someone with a strong family history of breast cancer who is four to be at “normal” risk for breast cancer still has a risk of breast cancer. This person needs to perform self-breast exams and have periodic physician exams and mammograms.

• It can cause great anxiety if you are found to have high susceptibility and if there is nothing you can do to prevent the cancer or pick it up at an early, potentially curable stage.

Your susceptibility is not your fate.

*47/32/2*

There are warning signs of possible quackery. The company, clinic, or people offering treatment

•claim the treatment is harmless, painless, and nontoxic

• use a secret formula that is never revealed and cannot be tested or reproduced by anyone else

• explain the treatment’s action on the basis of unproven thee •require patients to follow special diets or intense nutritional support during and after treatment (the failure of the treatment can then be blamed on the patient’s inability to follow the rigorous diet)

•discuss their treatment only in the mass media •support the success of their treatments with testimonials and anecdotes

•have never done controlled studies to document effectiveness

•are not staffed by certified cancer specialists

•do not require a consent form •attack the medical establishment

Can I Do Both Conventional and Alternative Therapy Together?

If you learn of an alternative treatment that sounds appealing, get objective information about the risks and benefits. Discuss your findings with your oncologist before you make your final decision about which treatments to pursue.

If you decide to proceed with any alternative therapy, it is best to do so under the auspices of your oncologist, so that your progress can be monitored and you will not offset any benefit of conventional therapy.

If your oncologist adamantly opposes your pursuing simultaneous alternative and conventional medicine, and you feel that you must do both, it is safest for you to find a reputable oncologist who feels comfortable with your proposed treatments.

*38/32/5*

Studies on new cancer treatments for human volunteers are called clinical trials. The drugs or treatment have already been shown to have anticancer effects in the laboratory. The goal is to find safer and more effective cancer treatments.

Investigational treatments, also called experimental treatments, are not the same as alternative treatments.

Who Runs Clinical Trials?

Clinical trials are overseen by

•the National Health and Medical Research Council (NHMRC)

•a “co-operative group,” an organized group of doctors from a number of hospitals and clinics who are trained in designing,

running, and interpreting clinical trials

•a qualified individual oncologist or group of oncologists in one institution or clinic

•hospital research ethics committees: every hospital that runs a clinical trial must have an ethics committee which includes a lawyer, minister of religion and a layperson or community representative.

Why Would I Want to Enter a Clinical Trial?

A clinical trial can offer you some unique advantages:

•It can provide an opportunity to try newer treatments before they are generally available.

•These new treatments may prove to be your best chance for doing well.

• It can offer a chance to participate in work that helps all cancer survivors, no matter your outcome from the trial or the conclusions drawn from the trial.

• If you are in remission from a cancer with a very high rate of recurrence, and there is no standard therapy to help prevent recurrence, you may want to try to increase your chance of prolonging your remission.

• Some people feel they are watched more closely in a trial, sin the investigators have to report on all results.

• Clinical trials usually provide all treatment and follow-up at cost to the patient.

Are People Who Participate in Clinical Trials “Guinea Pigs”?

No. The term has come to be associated with animals or people used against their will for experiments without regard to the safety.

The negative connotations of the term “guinea pig” do not apply to clinical trials. You cannot become a participant in a clinical trial without your written informed consent, let alone without you knowledge. Clinical trials are controlled, informed situation; where your short-term and long-term safety is of paramount importance. Except for Phase I cancer experiments, clinical trials offer you the possibility of doing more to treat or prevent cancer than is available with standard therapy.

Many Phase II or III clinical trials offer exposure to cutting-edge treatment and technology before it is routinely available. These treatments are administered by highly trained, highly qualified doctors.

*28/32/5*

• travel restrictions (if you come in from out of town, some dates may be more expensive or less convenient than others)

• financial constraints (sometimes there is an option about how often certain tests are obtained or which tests are done)

• family/work responsibilities

• anxiety about your condition (for your peace of mind you may need more frequent follow-ups than are usually recommended)

Some patients prefer to have all their tests done prior to the follow-up visit, so that all the results can be discussed at the visit.

Where you are followed up can be influenced by travel restrictions or financial constraints. If your oncologist is in another city or town, you can sometimes arrange to have blood tests or scans performed locally, and the results or scans mailed to your oncologist. When very specialized blood tests are required that are not available locally, blood can sometimes be drawn locally and mailed to the lab used by your oncologist.

Follow-up visits help you stay well and confirm that you are doing well. Follow-ups do not cause cancer or other medical problems. Learn to use your follow-ups in a positive way.

*19/32/5*

You have had a response, also called a partial remission, when tests indicate that you still have cancer but that you have gotten rid of at least half of your cancer. This can be determined through a comparison of the results of tests obtained before and after treatment. For example, the spots on your chest X ray may be 75 percent smaller (e.g., in lung cancer), or there may be 75 percent fewer cancer cells in the blood and bone marrow (e.g., in leukemia). Some doctors may use the term “response” or “partial remission” when there is any shrinkage of your cancer, but a less than 50 percent reduction in detectable cancer is not considered a meaningful improvement from an overall view of your cancer situation. Ask your doctors what they mean when they use the terms “response” and “partial remission.”

What Is a Cure?

A cure is said to have occurred when there is no detectable sign of cancer and you have the same life expectancy as if you had never had cancer. For some cancers you have to be in complete remission for a year to be considered cured. For many others five years is the reliable interval after which your chance of recurrence is extremely low. Still others, such as certain types of lymphoma, are considered incurable, because no matter how long you live in complete remission there is still a significant chance the cancer will recur.

*8/32/5*