If your pain proves really difficult to control, in spite of following the approaches I have recommended, think about what you are gaining from it. No, that’s not a misprint, I do mean gaining. Are you frightened of being discharged from hospital? Does the fact that you still have pain mean you can stay there, where you feel safer? Does your pain mean that you are less likely to be left on your own? If something like this is happening for you, there may be other, much less unpleasant ways of getting what you need. Perhaps you could tell friends, family, nurses, social worker, chaplain or someone else you trust just what it is you need. Perhaps you could try to work out what it is about hospital that makes it feel safer and then see what you could do to make home feel safer. Perhaps you could ask to have someone to keep you company just because you’re lonely and frightened, accepting that you don’t need to have pain to ask for this. Basically, try to ask for what you need directly instead of through your pain. You may be surprised at the results.

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As you know, your informed consent (usually written) is supposedly necessary before you can be treated in any form of research trial. I know that, definitely in Australia, and probably in other countries, some patients are treated in clinical trials without their knowledge or consent. Some doctors randomise their patients and then tell them that they recommend the treatment to which they have in fact already been allotted by chance. The only way you could suspect this is happening is if your doctor is particularly adamant that you follow his or her recommendation (although of course this may simply be a reaction to the fact that your questioning is undermining your doctor’s authority). You should ask directly if you suspect that you are being treated in a research project without your consent.

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Studies are under way with treatments whose risk-benefit balance will very likely make them valuable only for patients at high risk. When these treatments become available, susceptibility testing will take on greater practical importance for your efforts t prevent cancer. This will be true for treatments that

• work only if you are at high risk

• are too risky to justify using if you are at normal risk

• are too toxic to justify using if you are at normal risk

• are too expensive to justify using if you are at normal risk

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Research suggests that an intact immune system plays a role in preventing or delaying recurrence in some types of cancer. Your immune system may do this by detecting and destroying cancer cells before they have a chance to multiply and form a cancer big enough to be measurable. Simple measures that strengthen your immune system and may help prevent recurrence include

• adequate sleep

• moderate exercise

•good nutrition

Factors that are felt to impair your immune system include

• excessive fatigue

• malnutrition

• major grief

•chronic, unpleasant stress

The popular literature is replete with advice about how to build
up your immune system. There is little hard scientific evidence to| support the many claims of immune-enhancing measures other than those just reviewed.

Since I Have Had Cancer, Am I at Increased Risk for a Second Cancer (a Cancer That Is Not a Recurrence But a New Cancer)?

For many cancer survivors, the answer is yes. You are at increase risk for a second type of cancer if your cancer treatment is known to cause certain types of cancer. Some courses of radiation therapy; and many of the chemotherapeutic agents are associated with an increased risk of leukemia.

You are at increased risk for a second cancer if you had a risk factor for your type of cancer and if this risk factor is also a rise factor for other types of cancer. For example, smoking cigarettes puts you at increased risk of many types of cancer, including cancer of the throat and tongue. If you had cancer of the throat and
you used to smoke, you are at increased risk of developing tongue cancer. Be aware that if you continue to smoke after being treated j for cancer of the throat, your risk of a second cancer in the head or neck is dramatically higher than it would be if you quit smoking.

You are also at increased risk for a second cancer if your type oil cancer is associated with increased risk of other types of cancers! For example, some women who have had breast cancer are at a| statistically increased risk of developing ovarian cancer.

How Do I Find Out for Which Cancers I Am at Increased Risk?

You can

•ask your doctor

•call the Cancer Information Service, which will connect you to the Cancer Council, Foundation or Society in your state.

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Some clinical trials are so-called double-blind placebo-controlled studies. In these studies neither the patients nor the doctors know (“double-blind”) which patients are getting the new treatment (such as pills or intravenous medicine) and which patients are getting a blank (“placebo,” such as a sugar pill or intravenous saltwater). Studies are done this way in order that valid, reliable conclusions may be drawn.

If doctors or patients always knew who was getting the active treatment, they might be inclined to bias their reporting one way or another, even if they were trying to be objective. If treatments were not compared against placebos, you would never know whether an observed advantage was due to the treatment or to some other factor.

Each patient’s well-being always takes top priority, even in cases where placebos may be given. Some double-blind placebo-controlled studies are done with patients who are doing poorly and who have no known effective options left. For these patients the only choice is between doing nothing, and dying for sure, and participating in a clinical trial, and perhaps receiving a treatment that may have an effect on their cancer.

You may be at increased risk for a variety of medical problems. Some of these involve changes that are seen in most people as they get older but that occur earlier in people who have received certain cancer therapies. Other problems are very uncommon unless the person was exposed to certain cancer therapies in the past. Specific problems are discussed in Chapter 2.

If My Doctor Keeps Ordering Blood Tests, Why Do I Need So Many If I Am Doing Fine?

After treatment is completed, your body will continue to undergo changes related to

• healing

• aftereffects of the cancer

• aftereffects of the treatments

• development of new problems if new problems develop

Your body has an amazing capacity to compensate for small problems. You can feel and look normal even when something is not right in your body. Blood tests offer one easy, risk-free, relatively cheap way to get additional information that may indicate the presence of a small problem that, if left untreated, can become a big problem. Scans and X rays, in contrast, are much more expensive and carry some risks. It is not practical or wise to perform them too often.

Why Is It Important to Know for What Diseases and Problems I Am at Risk?

You may be thinking, “I don’t want to know about all my risks or about all the potential problems I can have. I’ve been through enough already.” Your risks exist whether you are aware of them or not.

Knowledge allows you to choose to decrease the chance of developing certain problems. You can minimize your risk of skin changes due to radiation by staying out of the sun and using a moisturizer regularly.

Knowledge enables you to decrease the potential impact of these problems on your overall health through aggressive screening and evaluation at the earliest sign of any problem. This is done at your cancer follow-ups and your routine visits with your internist or general practitioner. If you are at a high risk of developing low thyroid because of radiation to the thyroid area, dangerously low thyroid hormone levels can be completely avoided with regular (annual) blood tests of thyroid function and more frequent blood tests if you ever develop subtle symptoms that suggest low thyroid. This approach will not prevent you from developing low thyroid; it will prevent significant symptoms or problems from low thyroid. Your risks exist whether you are aware of them or not.

Finding out about potential problems can be distressing at first. But in the long run, knowledge is power. If you are aware of your risks, you can gain some control over their impact on your overall health.

Learning about your risks of future problems enhances your ability to make good decisions about your life.

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•you did not obtain one before you were treated, or

• there are multiple treatment options for your cancer, or •there are multiple options regarding further treatment after remission is achieved, or

• you are unsure of your current status or the options available to you at this time, or

•you have persistent cancer after treatment is completed, or •you want a second opinion about your reevaluation or your future follow-up

A second opinion is probably unnecessary if

•you did well with your treatments, and

•you are confident about your reevaluation, your understanding of all the options available to you at this time for further treatment, follow-up of your cancer, and prevention of future problems, and

• you do not feel the need for a second opinion

A second opinion allows you to review all your current options and confirm current decisions. It provides needed reassurance and lets you feel more confident about these important decisions.

You rely on additional opinions for many other decisions. For example, you may read Choice magazine, talk with friends and do some comparative shopping before buying a car. Or if a mechanic told you that you needed an $800 part to fix the “clank” in your car, you would probably get a second opinion before agreeing to the repair (unless you were a car mechanic yourself). Your health is obviously more valuable than your car.

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