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People often voice the fear that if they take strong painkillers now, they won’t work later. This is not true. There is no quota on painkillers that can leave you with nothing to fall back on once you’ve ‘used it up’. They will keep working. Admittedly, as I’ve already mentioned, you may need a bigger dose to get the same effect, but you can still get the same effect. So take the painkillers you need now, they will still work later.

Sometimes people are very reluctant to take a drug such as morphine because they think this is used only in the terminal stages. This is also not true. I recommended morphine often, to people with all stages of cancer, because it is a good painkiller. People who did indeed have incurable cancer often continued to take it with good effect, for many months. Don’t save strong painkillers for ‘the end’, use them when you need them.

Another reason you might have for taking insufficient painkillers to completely relieve pain is because you fear actual or anticipated side effects. We talked a bit about the actual side

effects earlier, and the need to find the balance between pain relief and side effects that is best for you. There are also the invisible, possible future side effects like kidney damage. This is

only a concern for people taking a lot of painkillers every day for many years, so it is not a real worry for you. Either you will recover from your cancer, in which case you won’t need to keep

taking painkillers or your cancer will not be cured, in which case possible kidney damage years hence is not really a concern. Either way, there’s no need to let this stop you from taking the painkillers you need now.

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How important are these statistically significant differences to real live people? This is a question that many doctors neglect to ask themselves or to allow their patients to decide. I have heard doctors claim that a treatment involving five different injections which caused nausea, low blood counts, hair loss and many other unpleasant side effects was ‘better’ than a treatment consisting only of tablets with very few side effects. The first treatment was ‘better’ because it produced a statistically significant improvement in the average length of life— three months longer than with the tablets. So when your doctor recommends a certain treatment, telling you that research has shown it to be the ‘best’, make sure you find out just what this means and what the alternatives are. Given all the information about each treatment, you may or may not agree with your doctor’s conclusion.

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As we saw when the blood tests for Huntington’s disease and AID became available, the decision whether or not to be tested hi complex social, legal, and medical ramifications. You may avoid having the test because you fear

• learning that you carry the gene for a type of cancer for which there are no available measures of prevention

• learning that you carry the gene for a type of cancer for which there are no available measures for early detection

•causing family tensions if some members carry the gene and others do not (which is a likely scenario)

•an altered relationship with family, friends or co-workers if you are found to have the gene

• difficulty in obtaining or keeping insurance if you are found to carry the gene

(the Australian Disabilities Discrimination Act 1992 does not address gene abnormalities)

•dealing with anything related to your own mortality or imperfections

Professional counselors, doctors, and nurses can help you understand how to use the available tests to your best advantage. From a medical point of view, knowledge is power, no matter how distressing. Your risk is your risk, whether you know what that risk is or not. With a knowledge of your risk, you can take steps to minimize your risk and make better decisions about family, career, and finances.

Your risk is not your fate. Knowing your risk allows you to minimize it as much as possible.

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What Are the Downsides of Alternative Therapies?

Alternative therapies are not as safe or effective as conventional therapies for the treatment of cancer.

Alternative therapies can hurt you when they are used instead of conventional therapy, because •you may miss an opportunity to control or cure your cancer with effective conventional therapy if you spend critical t working with alternative therapy

• you can get a false sense of security that you are being treated; and followed adequately when in fact you are not

• you may be taking unnecessary risks associated with the therapy

• you may spend a lot of money (there is a long, well-documented history of charlatans taking advantage of patients, and it occurs today)

Discuss with your doctor your questions and thoughts al the role of specific alternative therapies in the treatment of j cancer.

Is There Any Role for Alternative Therapy in the Treatment of Cancer?

Alternative therapy may offer you another option in the treatment of some of the problems associated with your cancer and ca: therapy. For example, some of you may benefit from acupuncture for relief of pain or other symptoms. The acupuncture is helping control symptoms and is not affecting the cancer. Discuss your questions and thoughts about the role of specific alternative therapies for the treatment of specific noncancer problems with your doctors.

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What Are the Disadvantages of Supplemental Therapy?

Each supplemental therapy has advantages and disadvantages. Even though most supplemental therapies are “nonprescription,” they sometimes involve a real risk of significant physical or emotional harm. Discuss with your doctors the medical risks and benefits to you. The pursuit of supplemental therapy requires an investment of your time, energy, or money.

When you believe in the potential benefit of a particular supplemental therapy, you nourish hope and a sense of control. On the other hand, if you feel pressured to pursue supplemental therapy or if you “want” to believe but are actually very skeptical of the benefits, the pursuit may be counterproductive. Under these and other circumstances, various supplemental therapies heighten rather than lessen your anxiety, drain rather than bolster your energy, and cause rather than relieve symptoms.

Make your decisions about supplemental therapy with the same care that you used in choosing your conventional cancer treatments. Find out from knowledgeable people (doctors, nurses, social workers, and counselors) what your options are. Discuss the potential benefits and risks for you, as indicated by reliable data. Information about supplemental therapy will allow you to maximize your resources toward healing.

How Do I Find Out about Supplemental Therapy?

You can learn more about visual imagery, biofeedback, relaxation, and meditation through self-help books and audiotapes or through consultation with a counselor, psychologist, or psychiatrist trained in biofeedback and visualization. A good starting place for self-instruction is Lawrence LeShan’s How to Meditate, Herbert Benson’s The Relaxation Response, and Shakti Gawain’s Creative Visualization.

Information about special diets and vitamins can be obtained from the hospital’s nutrition counselor and the Cancer Information Service. Dozens of self-help books are available, but the safety and scientific validity of their regimens are extremely variable. If you decide to follow a special diet, be sure to discuss it with your oncologist first.

You can find out about a good exercise program by investigating your local hospital’s rehabilitation programs. Although cancer-specific rehabilitation programs are still scarce, you may fit in well with an established heart, lung, or arthritis rehab program, depending on your current physical condition. These same programs mi have instructors who can set up an individualized program that you can follow on your own, if you are well enough. Ask your oncologist or doctor whether he or she has some guidelines for an
exercise program.

There are many forms of counseling and support. Call the Cane Information Service to establish the various services available in your state. Find out the focus of each of the services and the fee, if any. Some groups function as a forum for the presentation of information, some stress peer support, and others are more psychoanalytically oriented. Individual counseling offers a diversity of approaches, from short-term, crisis-oriented counseling to length insight-oriented analysis. It is preferable to seek the services of someone well versed in cancer-related issues.

After you find out about the available resources, try a few that sound interesting. Support services and counseling are two areas where you can usually pick and choose. Select the best ones for you.

There are many places to find humor: funny movies, comic and joke books, comedy audiotapes, and stand-up comedy (live and televised).

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How Can I Prepare for My Doctor Visits?

Before your visit, rank your concerns and questions in order of importance to you. Do not leave anything out, because what you consider minor or insignificant may turn out to be a critical piece of information to your doctor.

Think about how to present your information in a concise yet complete way. You may find that it helps to compose a list to bring to your visit. If there is not enough time to cover everything at your visit, the prepared list will help ensure that you cover the issues most important to you. Your doctor can glance at the list and spot any potential serious problems that must be addressed.

Before your visit

• make a list of any physical and emotional problems you have been experiencing

•make a list of your questions about your condition, your problems, your evaluation, your treatments

• know what time you need to be there

• know whether you need to be fasting

Every doctor has an individual style. Some doctors may appreciate your coming prepared with a list; others may be put off. The list is for you, so that you can keep your thoughts organized. Fit ways to make your visits efficient and satisfying.

It helps to have a friend or family member accompany you. Even at routine follow-up visits, you may not remember ever thing your doctor says. Having a second listener takes some of the pressure off of you at the visit. You may appreciate reviewing and discussing the visit with your companion immediately afterward.

Am I Supposed to Tell My Doctor about Every Little Ache or Noticeable Change?

It is very common to be self-conscious about what you report at your checkups. Report anything that

• you suspect might be important

• a family member suspects might be important

• is keeping you from feeling well

If you are unsure whether something is important enough to bring up, err on the side of overreporting. Let your doctor decide what needs to be pursued. Attending to relatively minor comfort issues can make an enormous impact on the speed or comfort of your recovery.

Your doctor can help you only with things about which you tell him or her. Your doctor wants to save your life and take care of all your discomforts and worries.

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If My X Ray or Scan Still Has Spots on It, or Some of My Blood Tests Are Not Normal, How Can the Doctors Say I Am in Remission?

It is very possible for your X rays, scans, or blood tests to remain abnormal even though no evidence of cancer is detected. X rays and scans can remain abnormal because the treatments got rid of all the cancer cells but left a scar in the area. This situation is similar to that of a skin infection that is cured with antibiotics but heals with a permanent visible scar, or that of a pneumonia that resolves but leaves a permanent spot on your chest X ray. Blood tests can remain abnormal, reflecting the changes that occur as your body recovers from the treatment.

How Do Doctors Know Which Spots Are Cancer and Which Are Scars?

Your doctors can usually know whether a spot on an X ray or scan represents a scar or leftover cancer on the basis of

• subtle differences between the appearances of scars and cancer

• the different behaviors over time of scars and cancer

When there is any doubt, and the answer will affect decisions that need to be made at this time, the only way to be sure whether a spot is cancer is to biopsy the spot.

How Do Doctors Know Whether an Abnormal Result on a Blood Test Is Due to Cancer?

Your blood test results are interpreted with regard to all the other available information about your specific circumstances. For example, if you develop elevated liver enzymes in your blood, this does not suggest cancer if your type of cancer rarely spreads to the liver and if your treatment is expected to cause such an elevation.

Sometimes your blood tests will indicate abnormalities that cannot be explained completely. If the results of your physical exam and various scans do not explain the abnormality, your doctor may have to watch and wait to determine the significance of the blood test abnormality.

It is not uncommon to have unexplained abnormalities that persist for a while, or indefinitely, following cancer treatment. These abnormalities often have no impact on people’s lives or their prognoses. The surviving of cancer may mean living with “blips and spots” on tests.

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