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For many years, Liz, thought that her son’s congenital problems were a fluke. Just one of those terrible things that happen to some people. But all that changed, when she found she was pregnant again.She made an appointment with her obstetrician. After some tests, the nurse walked into the examining room with a paper and pen in one hand and a needle in the other. She brusquely asked Liz to sign a paper so she could proceed with the “progesterone” shot. Liz began to read the waiver. It was for the same synthetic progesterone she had been prescribed for Charlie’s pregnancy. The waiver contained the FDA’sstrongest warning, called a “Black Box Warning”, describing all the possible side-effects. Included in that list were birth defects, such as “genital abnormalities” and “risk of hypospadias” (urethra opening at the bottom of the penis).”Then it hit me like a ton of bricks. Oh my God, that’s what caused my little boy to have this horrible birth defect!”.Even though the warning was dated years before Liz’s first pregnancy, her doctor had never presented her with the waiver nor warned her of any possible side-effects. In fact, her doctor insisted that synthetic progestins were totally safe. Liz finds it incomprehensible that many in the medical profession, in spite of the FDA’s Black Box Warning, continued to prescribe the synthetic progestins instead of the totally safe bio-identical progesterone, known as natural progesterone.*39/165/1*
Let’s be quite clear from the start just what you are up against. Most doctors and other practitioners who treat people with cancer want to be in complete control of the situation themselves. They are used to treating their patients like ignorant and dependent children. They are used, not to making recommendations, but to giving orders. They are used to their patients meekly and without question obeying those orders. Patients who do ask questions and want to make their own decisions, are treated as a father might treat naughty, rebellious children. In an effort to eradicate what they see as a threat to their authority, they may act busy and important, patronise, cajole or intimidate.
So don’t expect it to be easy. You are unlikely to get willing cooperation and may be treated with hostility, impatience, ridicule or condescension if you insist on clear explanations that will enable you to make your own decisions. You must be prepared to deal with these tactics.
What If I Get Short-winded Easily?
A sense of being short-winded can be caused by
• direct changes in your airway or lungs from surgery, radiation, or chemotherapy
• changes in your heart
• deconditioning (loss of tone and strength because of lack of exercise)
What If I Cough a Lot?
Coughing can be due to one of many different problems. After cancer therapy, a cough is often caused by
• effects of your cancer on your lungs or throat
• reflux of stomach contents into lungs
Let your oncologist know if you have a cough. If your oncologist is aware of your cough, let your oncologist know if
• your cough gets worse
• your cough prevents sleep
•your cough becomes so productive that you bring up sputum or blood
•you develop fever, chills, or shortness of breath
• you develop chest pain
Studies have shown that people able to resume work after successful treatment perform at least as well as, and often better than, workers who have never been sick. However, in some circumstances survivors cannot resume prior jobs or responsibilities, temporarily or permanently. It may be unwise medically for a construction worker, an ice-skating instructor, or an orthopedic surgeon to resume work soon after bone marrow transplantation. However, they may try to return to work full-time anyway. By pushing themselves at work, they may feel that they can avoid facing their loss. They trade off the benefits of a reduced workload for the sense that they are back to normal and that nothing much has changed. And since there exists no blood test for measuring fatigue, it is hard for them and their doctors to know when they are ready to resume strenuous or stressful activities.
Another dimension to fatigue makes it challenging: how you look does not always reflect how you feel. If your skin turned purple (the deeper the purple, the more drained your energy), anyone who looked at you would know how you felt. And, unlike baldness or anemia, which goes away gradually and predictably, your energy level may fluctuate from hour to hour and day to day, making it difficult for you and those around you to predict how you will feel at any particular time. As it is, others can know whether you are fatigued, and how much, only if you tell them. This means dealing with repeated inquiries or providing a running report on your sense of well-being. Despite everyone’s good intentions, this monitoring is itself tiresome.
Unlike baldness, vomiting, or pain, fatigue is not a dramatic or sympathy-engendering symptom. In our fast-paced society, “I’m tired” is a universal complaint. Generally speaking, treatment-related fatigue is more persistent and debilitating than that due to a busy lifestyle. It is alienating when healthy people respond to you by saying that they, too, are tired.
To make matters worse, fatigue is difficult to quantify. Under normal circumstances people use hyperbole to describe symptoms: “I’m completely exhausted. I’m dead tired.” No useful words exist to communicate degrees of fatigue.
I believe that a new medical term is needed for the distinctive fatigue commonly seen after the completion of successful cancer treatment. I offer the term “postcancer fatigue” (PCF) as a handle for survivors, health care professionals, and caretakers trying to deal with this difficult problem. “Postcancer fatigue” captures the essence of this problem: not only that fatigue often persists after remission is achieved but that being tired is not just in one’s head. Postcancer fatigue is a symptom that must be recognized and treated as such.
My hope is that, by describing and naming this condition, I will encourage a dialogue between clinicians and researchers, doctors and patients. Distinguishing this fatigue highlights the problem and will prevent underreporting by patients and undertreatment by the health care team. Patients will be reassured by this validation of their debility, and hope on their part will be nourished by the knowledge that research is being done to facilitate its prevention, detection, and treatment.
Precautions must be taken not to attribute someone’s fatigue to postcancer fatigue before all known causes of fatigue have been ruled out or corrected. Even though the definition demands this, the desire to put a closure on your medical evaluation may induce you or your doctor to label your fatigue “postcancer fatigue” and end the evaluation prematurely.
Further research into postcancer fatigue—its incidence, its patterns of expression, its natural history, its relation to cancer recurrence and other medical problems, its cause, a marker (a specific and sensitive diagnostic test)—may suggest that it is actually part of a syndrome that occurs following treatment. Research is essential and may yield clues to as-yet-unanswered questions about cancer.
Hearing of someone else’s death from cancer forces you to remember that cancer, including your cancer, can be a life-threatening disease. It is difficult to function, let alone enjoy life, if you are constantly thinking about your mortality. During treatment one of the ways you control your thoughts about mortality is to focus on your treatments. After treatment, as you begin to feel safe again, you may calm your anxiety by rethinking your recent past: “I wasn’t in real danger when I was sick. It was scary, but I was going to do okay, and I would do okay if I developed cancer again.” You tame thoughts about the life-threatening nature of cancer by seeing your disease as a chronic illness that requires treatments. It is adaptive and healthy to see yourself as having a disease with which you can live.
Whenever you learn about another’s death, whether you have had cancer or not, it disturbs your sense of being safe from death. This uneasiness is greater if the person was of similar age or social circumstance. It is extreme when the possibility of your own death is more real for your having faced it. Past and present fears that you successfully suppressed during and after your cancer treatment come to the surface, making you anxious or afraid.
To deal with the emotions, remember that another person’s death has no affect on whether or when you will die. You may be worried, consciously or subconsciously, that if someone else succumbed from cancer, then you will. Many factors determine what happens with your cancer. Someone else’s course and outcome tell you nothing about your future course and outcome. Even if you hear of a series of people who die from the same type of cancer that you had, remember that they were all different people in different circumstances.
You may worry that someone’s death affects the statistics about your prognosis. It does not. Consider an analogy: If you flip a coin, you have a fifty-fifty chance of landing it on heads. If you do it four times, and each time you get heads, then the fifth time you still have a fifty-fifty chance (assuming, of course, that it is not a trick coin).
For each coin flip the prognosis of getting heads is fifty-fifty, no matter what the results of the other flips. Similarly, your prognosis is independent of everyone else’s. If statistics say that 80 percent of all people with your cancer survive five years, someone else’s death does not increase or decrease your chance of surviving. It is not as if, by someone else’s being one of the 20 percent who succumb, you have more of a chance of being in the 80 percent surviving.
On the other hand, your being in the 80 percent of the people who are surviving did not hurt the other person’s chance of surviving. You could affect someone else’s prognosis only if there was just enough treatment for one of you, and you got it.
You may feel guilty that you survived, especially when the other person was younger than you, fought his or her cancer at the same time that you fought yours, or appeared to deal with the disease better. This is called survivor’s guilt, and it is seen in survivors of disasters. The thought “Why did I survive when she didn’t?” taps into emotional issues like the meaning of your life. You may feel a rush of gratitude that you are alive, and then feel guilty that you were happy for yourself when someone else died. Being relieved that it was not you does not hurt anyone and in no way means you are glad someone else died.
Another reason that news of someone’s else death from cancer can touch you deeply is that you have a better sense of what that person went through before he or she died.
If you knew the person fairly well, you may remember hearing the words “I know I can beat this.” We all want to believe that we can use will power to make things turn out a certain way. Whenever you hear someone sound confident about surviving, you want to believe it, for that person as well as for yourself.
It is unsettling when someone with a positive attitude dies, especially if you think that death signifies the failure of a positive attitude. The benefit of a positive attitude is to be judged not only in terms of survival but also in terms of the quality and, possibly, the length of life. If someone with a positive attitude dies, you can be assured that his or her quality of life was better during life than it would have been without that attitude. And maybe he or she lived longer too. A positive attitude is a major asset no matter what the ultimate outcome.
One characteristic that separates humankind from other animals is our awareness of our own mortality. We all live under its sword. Each and every one of us could end up in the emergency room on any day with an illness or injury that could become life threatening. No one is really safe. However, people who have never been seriously ill or injured generally cannot picture their end, which makes it easier for them to deny that there is one. After you have had cancer, the possible and, in many cases, probable cause of your death now has a name and a face. Being a cancer survivor, you have seen the sword up close. For you, denial of dying and death is difficult, if not impossible.
Instead of repressing fears of recurrence, future illness, or death, you can learn skills to face these fears and thus lessen or eliminate them. The risk of recurrence is a reality. The point is that no matter how great or small this risk, you can step out from under the sword by focusing on what you can do to stay healthy, prevent recurrence, and detect recurrence early.
Consider an analogy: Most of you could walk the length of a six-inch-wide beam placed on the floor. With the ground just inches away, you would focus on the beam and maintain your balance easily. If this same beam were raised five feet above the ground, most of you would weave and waver, flapping your arms as you tried to maintain your balance before falling off to the side. The beam would be exactly the same, yet the distraction of the ground five feet below would cause you to lose touch with the beam and lose your balance. Gymnasts learn to focus on the beam, not the ground. With practice, they rarely fall. When they do fall, they get right back on the beam. You, as a cancer survivor, must learn to focus on your present life, not on the uncertainties and unknowns of your future. It is a skill that can be learned and must be practiced. It will liberate you from the sword.
For all cancer survivors, especially those with an unfavorable prognosis, the cliché “quality not quantity” is very profound. By developing a frame of mind that allows you to live fully in the present, you learn a new way to measure time. By treating each day like a precious gift, you catch the moments and slow the clock of life. At worst, you fit more living into a smaller number of days. At best, you live an average number of years but squeeze many lifetimes of pleasure and experiences into them.
Providing a healthy framework for thinking about your feelings, relationships, and deepest fears will help you find a new normal life after cancer.
AFTER CANCER: USING MEDICAL SYSTEM FOR NON-CANCER AND CANCER-RELATED CARE. RISK FOR AIDS AND INFECTIONS
Whom Do I Call If I Develop a Problem That May Be Related to My Cancer or Cancer Treatments?
If you are still seeing your oncologist regularly, call your oncologist. If you have been released from the care of your oncologist, call your regular physician and explain your problem. Your doctor can advise you whom to see.
Whom Do I Call If I Develop a Problem Unrelated to My Cancer, Such as Bronchitis or Backache?
Call your regular doctor, not your oncologist. If your regular doctor feels your problem may be related to your cancer or cancer treatment, he or she will consult with your oncologist or refer you back to your oncologist.
Use the medical system effectively for routine care, non-cancer-related care, and cancer-related care.
Since I Have Had Cancer Treatment, Am I at Increased Risk for AIDS?
No. Cancer and cancer treatment do not increase your risk of getting AIDS. If you received blood products, there is an extremely small risk of transfusion-associated infection.
Am I Now More Susceptible to Infection Than I Was before My Cancer?
Radiation therapy and chemotherapy cause changes in the immune system that are quantifiable by sophisticated tests but do not show up as increased episodes of illness. Chronic stress and profound grief affect the immune system and may play a role in the frequency of infectious illness.
If it seems to you that you have more infectious-type illnesses, you may indeed have more illnesses. Or you may be getting the same number of illnesses, but you notice each episode more because
• you get sicker or feel worse with each minor illness as a result of your generally weakened condition
Whether or not you are more susceptible to infection depends on
• the type of cancer you had
• the type of therapy you had
• the type of surgery you had
• your current medicines
• your nutritional status
• your age
Ask your oncologist about
• the likelihood of your being at increased risk of viral or bacterial infections
• precautions you can take to prevent infections
• signs or symptoms of infections