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Survivors - Now What? Part 2

After treatment: Long-term survival

Pocket Guy

We have talked about the panicky feelings that plague many people when they finish treatment: the paradoxical increase in distress and vulnerability well characterized as the Damocles syndrome. These universals of early survival diminish over time. But in the longer term, how people get along depends on the mix of factors that contribute to how all of us manage: the combination of health, supportive family or friends, philosophical and spiritual resources, basic financial stability, and a satisfactory work life.

Giving Back

Often a person who has survived cancer has a desire to "give back" and seeks a way to do it. Many cancer survivors gain a sense of meaning and purpose in doing something for others with cancer. This is a remarkably important way of giving back because seeing and talking with a live human being who has beat the odds and survived your type of cancer, is a more tangible sign that you to can survive. It can be more important than any words of wisdom or encouragement from a doctor. It is truly a gift of hope and can be given only by someone who has been there. Hope is so important early on, and a volunteer, by his or her presence, makes a new patient feel, "If you made it, I can, too."

For the volunteer survivor, the other side of giving back is the feeling of reward of having helped someone else with the same problem. Patient-to-patient volunteers frequently voice the conviction: "We [volunteers] get as much out of it [the encounter] as they [the patients] do."

These convictions stem from various points of view, including these:

I wouldn't want anyone else to have to go through what I went through," says Mary, a breast cancer survivor in her sixties who had a mastectomy when such things were rarely discussed and when little support was available.

I kept thinking 'something good' has to come of this," says Frank, a forty-year-old Hodgkin's disease survivor. "I found the opportunity to help other patients is one of the good things that have come out of my cancer-and it's enough for me.

This patient-to-patient volunteering constantly reminds me how strong I am, how much I have endured, and how far I have come," says Lourdes, a sarcoma survivor. "I was just as scared as they are. Helping them gives me a sense of appreciation and gratitude for my own journey.

Work and insurance Issues

Charlotte, a thirty-eight-year-old saleswoman, completed her chemotherapy treatment for lymphoma one year ago. Since she returned to work, Charlotte says, "Everyone treats me funny. It seems like someone's always telling me 'You look great!' which makes me think either I must have really looked great horrible when I was sick or that everybody thinks if you have cancer you're supposed to look like death warmed over, so how come I don't? People ask, 'How are you?' in this very pointed way, as if they're assuming something must be wrong. Or they ask me if I'm too cold because of the air conditioning, or something like that. Actually, I'd be fine if people stopped relating to me like some kind of freak."

Arthur, a thirty-year-old leukemia survivor, works as an attorney at large Wall Street law firm. He says, "I work in a very conservative firm. I got a lot of snide comments about my 'buzz cut' when I came back to work before all my hair had grown back from chemo. Like, 'All you need to know is an earring and tattoo.' I just didn't feel like explaining and answering their questions."

Through Arthur was on a fast track for a promotion, he feels that his advancement has been derailed by his illness. "I'm not getting the number or quality of referrals I got before I was sick," he says. "At first, I thought I was getting a cushy workload so I could recover my endurance and not have to work such long hours, which was great when I felt tired a lot. But now that I'm stronger, I feel that I'm not considered able to perform normally. I don't know if people think I'm tainted because I had cancer, or if they think I'm no longer reliable, because they're afraid I might have to go back to the hospital at any moment or I might drop dead. As if the same thing couldn't happen to them…

"But what really gets me is that I can't say anything; I can't rock the boat. If they get upset with me and I eventually lose this job, I'm afraid I wouldn't get another one with my health history. What other employer would take me on knowing I had cancer? And if that happened, how would I get my health insurance? I know how expensive it is to buy on your own. Yeah, it's illegal to discriminate based on medical history, but there are a million reasons they can give for not hiring me."

The work issues extend to parents of childhood survivors.

Michelle came through her initial treatment well, and all looked hopeful for her. Of course, her parents were grateful and delighted to have Michelle returning to good health. However, the family was covered under the fathers health insurance plan at his job as a radiology technician. He said, "I have a lot of problems with my supervisor, and I want to change jobs to improve my situation. But how can I risk a gap in my health insurance coverage if I change jobs? I feel I'm 'stuck' in my job. They've been good about giving me time off when Michelle was sick. To be honest, I'm just afraid to make a change."

The concern about changing jobs is an important issue for survivors. It calls for revealing the cancer diagnosis with the possibility of job discrimination or difficulty in obtaining new health insurance coverage.

Sometimes realistic issues arise involving physical problems that complicate work:

Lynn is a fifty-four-year-old breast cancer survivor. "I'm a librarian, and one of the simplest things I do every day is take these heavy reference books off the shelf whenever someone wants to look at one. Well, I've never given that part of my job a thought. But since I had the lymph nodes removed from under right arm as part of my breast surgery, it 's really hard for me to lift them. On one hand, I didn't want to strain or hurt my arm because I'm worried about it swelling up [lymphedema]. On the other hand, it seemed silly to ask someone for help every time I needed to grab one of these volumes. They would wonder why I couldn't do it myself. I talked with my boss, who understood my predicament and moved me to another area, where I can use my skills to help people with computer searches. I hated to own up to the fact that I simply couldn't do that part of my job on a long-term basis, but it was a realistic decision, and now things are working out well."

Balcony Guy

While legislation exists ostensibly to protect people who cannot do their original job, such laws are not always respected. This problem falls harshly on blue-collar workers, whose jobs entail more physical effort. There are resources available when an employer is discriminating in subtle or obvious ways. The National Coalition for Cancer Survivorship (NCCS) and the Center for Patient Advocacy provide opportunities for legal advice. Also, it's possible to appeal a case through state and federal offices. It is wise to get some counsel early concerning your legal rights.

Surveys have shown that the concerns about poor work performance of cancer survivors are myths that need to be dispelled. It is important to remind employers that, overall, about three out of four cancer survivors are able to resume their jobs at the level of employment they held before they were diagnosed with cancer.

The extent of job discrimination is difficult to pinpoint, but large numbers of cancer survivors have reported it, varying from being fired, laid off, or pressured to leave; to being demoted, given less desirable work, or denied a promotion or raise; to having a hard time finding a new job.

The following attitudes are misconceptions about cancer, held by employers or coworkers, have contributed to job discrimination:

The old idea of calling cancer a death sentence. Therefore, in the long run, people who have been treated for cancer are considered more of a liability to a company than an asset. They may also raise the cost of insurance for the group.

Cancer survivors will be unable to work up to par, either because of more absences, less strength, or less ability to perform.

Cancer may be contagious. It may be unsafe to work next to someone who has cancer.

In spite of these misconceptions and biases, nearly two out of three cancer survivors claim that their employers and coworkers have been helpful and supportive to them by modifying work schedules so they could go to medical appointments and by relieving them of taxing physical tasks to accommodate their needs. Indeed, in the United States, the Americans with Disabilities Act (ADA) prohibits employment discrimination based on disability and demands that employers must provide an "accommodation" for a disability; for example, the employer must provide access to the worksite to individuals in wheelchairs. Under this law, it is illegal to discriminate against a worker who can perform a task with a reasonable accommodation. Another law, the Rehabilitation Act of 1973, which applies to employers who receive federal financial assistance, was extended in the 1990s to include cancer survivors. This law prohibits discrimination against people with a medical condition that has no effect on their ability to perform the particular job at hand.

Health care is in such flux in the United States that it is difficult to predict whether or not the worries about insurance will be addressed. At present, through federal law, you can retain your health insurance plan for eighteen months if you become unemployed by paying it yourself. There are moves to prevent higher rates being charged for those with a history of particular illnesses. It is likely that at least some of these problems will be corrected in the next decade. The Center for Patient Advocacy can provide you with information and advice regarding these issues.

Family and friends

Social support and ties (family and friends) are important in adapting to cancer. This is no less the case for survivors, good marriages get stronger, but marriages that were poor before the onset of cancer are not likely to get better. Studies show however, that divorce rates are no higher among cancer survivors than among the healthy population. Also, parents of a child with cancer are no less likely to divorce than a couple whose children are healthy. When the cancer survivor experiences the loss of a significant other through either conflict, divorce, or death, it adds a burden to coping with long-term cancer issues. Clearly, a stable intimate relationship is helpful to survivors.

There is no question, however, that even the most loving and stable marriages are challenged and stressed when one of the partners has gone through cancer. One of the most common problems is the feeling that the spouse (and nearly everyone else) just has no clue to how the cancer patient feels. "He [or she] just doesn't understand" is a common refrain. Survivors may find their loved ones are overly solicitous and are unable to "put the cancer behind" them when the survivor would like to. Sometimes, survivors feel perfectly fine but are prevented by loved ones from doing anything "strenuous" lest they hurt themselves, which can make the survivor feel overprotected, even humiliated. Changing this pattern without hurting the spouse is hard, especially during the early stages of survival.

Similar problems occur for child survivors, whose parents are often hyper-vigilant in looking for any signs of illness and restricting the child's return to normal behaviors and activities out of fear that their child might "catch something." Family members often ask for help in dealing with these issues. They ask, "How much do I protect or do myself? To what extent should I let go? How much should we talk about cancer? Am I making it worse?"

Sometimes, the opposite response is seen in the spouse or other loved ones: the assumption that the survivor is now well and that medical problems are all over. The survivor is easily fatigued, easily stressed, and yet the healthy spouse doesn't seem to "get it." Both are experiencing battle fatigue that sinks in when the battle is over; each needs great consideration from the other, yet neither can identify what's wrong. In these instances, couples therapy or family therapy is needed to secure a return to normalcy.

Many people do regain their ability to perform all or nearly all the tasks they performed before they became ill. But many find, that they need to modify or avoid certain tasks or activities soon after their treatment or, in some cases, permanently. Other times, we see the Superman or Superwoman syndrome, in which the survivor tries to ignore common sense and tries to prove how strong he or she is.

One piece of good news regarding relationships after cancer is that many survivors (about one of the three) report that their cancer has resulted in positive changes in their relationships with really close friends. However, another study found survivors complained that both family and friends, who were devoted during the crisis of the illness, became increasingly less supportive as time went on. Some survivors said that this was the "single most distressing hardship of long-term survival." Sometimes, people aren't clear how much to "hover" and how much to go on with "business as usual." Likely, it's best if you, the survivor, give off signals as to what you actually need. We all vary in how much attention we need from others, and in this instance defining that need for others may help.

You may find it hard to talk about continuing problems, both physical and psychological, that are due to cancer. It is important to let the people close to you know that even though you are cancer free, you still have fears and moments of sadness or other emotions related to cancer for which you need support. Some survivors face persistent reminders of their cancer because of a physical loss that continues to require an adjustment. And they are not helped by others saying "you should be used to it by now." Because of these attitudes, the cancer survivor may find it difficult to share how hard it still is, or that occasional wave of upset that comes up from time to time. In these instances, a self-help group is a great resource because it's made up of other survivors who have had similar experiences and dealt with similar issues.

Posttraumatic stress disorder

Button Down

Most of the problems with which cancer survivors cope fall into the domain of distress, which would not qualify as a bona fide psychiatric disorder. However, one form of anxiety appears often enough in cancer survivors that it should be mentioned here: posttraumatic stress disorder (PTSD).

The term posttraumatic stress disorder was popularized by Dr. Lenore Terr, a psychiatrist. She studied twenty-three children who in 1976 were kidnapped at gunpoint while in their school bus in Chochilla, California, and held hostage. They were buried underground in their bus before they escaped. Terr discovered that, some time after this traumatic event, fourteen of the twenty-three children suffered from mental flashbacks of the event, frequently replaying it in their minds. They also had symptoms of increased arousal of the autonomic nervous system, such being startled by loud noises, high anxiety, difficulty sleeping, poor concentration, nightmares, irritability, and anger. Some Vietnam veterans showed the same symptoms after combat. The disorder has increasingly been described among those who have experienced a frightening, traumatic event, including a natural disaster, rape or physical abuse, or combat.

Professionals have begun to recognize these symptoms in cancer survivors as well. In the first studies, it looked as if PTSD occurred in 15 to 20 percent (about one in five) of cancer survivors who had been through aggressive treatments, such as bone marrow transplants. However, further studies have indicated that most patients experience a milder version of posttraumatic stress, with some of the symptoms but not the full-blown picture of nightmares, anxiety, depression, flashbacks, and emotional "numbness." Dr. William Redd and his colleagues at Mount Sinai Medical Center found that about 15 percent of adult survivors of bone marrow transplants have full-blown PTSD, with some symptoms present in another 10 percent. A quarter of children who had been through difficult cancer treatments, as well as their mothers, showed posttraumatic signs a year later.

If you are experiencing any of these symptoms, you should seek help. Cognitive-behavioral therapy is effective in treating PTSD by reducing the response to the painful memories. Anti-anxiety medications may also be necessary.

Researchers are beginning to study persons with PTSD with brain scans. Using positron emission tomography (PET) and functional magnetic resonance imaging (FMRI), they are determining how traumatic memories are processed, and in what areas of the brain. So far, the limbic system, which plays an important role in emotions, memory, learning, and behavior, appears to be involved. Memorial Sloan-Kettering Cancer Center is studying Holocaust survivors who have developed cancer or have experienced a loss that seems to reactivate old, repressed, painful memories. It is likely that PTSD will turn out to be a window to understanding much more about the "hardwiring" of the emotion of anxiety, effective and ineffective ways of coping with it, and who is more vulnerable to developing PTSD after a traumatic event.

Sex and fertility after cancer

Sexuality is a critical area of human life, from the early teenage years and onward. Sexuality helps shape one's self-identity as a person capable of an intimate relationship with another human being, and one who has the capacity to have a family and children. Both the psychological and physical aspects of sexuality may be impaired by cancer and it's treatments. Both can have devastating effects on the survivors, particularly on those who are young and just beginning to form intimate relationships.

Sometimes the loss is clearly physical: impotence following the cutting of pelvic nerves during prostatectomy (removal of the prostate); premature menopause and infertility in women after surgery or chemotherapy; infertility in teenage boys and men following treatment for leukemia, lymphoma, or testicular cancer. Today, men and adolescent boys are given the opportunity to bank sperm prior to beginning high-dose chemotherapy for Hodgkin's disease, non-Hodgkin's lymphoma, acute leukemia, and testicular cancer. For a lot of men, this option reduces somewhat their sense of loss. Perhaps it is only a matter of time until similar banking of women's ova (eggs) can be done as well.

Even when the treatment has had no direct impact on the body's ability to function sexually, psychological effects can make it hard for survivors to see themselves as sexually attractive and desirable. It is not unusual for survivors to shun intimate relationships, particularly new ones. Common thoughts are: "What do I say when I undress and the scars show? How can I tell, yet how can I not tell, and be honest with someone I like a lot?" The inner loss of confidence in one's sexual identity can be as powerful a deterrent to returning to normal sexuality as an actual physical impairment of function.

The major issues for cancer survivors have been well described by Dr. Sarah Auchincloss, a psychiatrist. She points out that as a survivor you are simultaneously dealing with these psychological and physical aspects. The threat to life that cancer and its treatments present puts sex temporarily on a back burner. For six months to a year after finishing cancer treatment, the risk to your life is the framing experience. You can't pull your sex life out of the cancer frame too early. It is reassuring to recognize that the low or absent desire for sex in the early survival period is not usual and represents the psyche's recovery from a trauma. It's like having been in a car crash and you come home feeling battered, bloodied, and shaken up, and your spouse or partner wants to have sex. You're ready to snap. "Are you out of your mind?"

How and when to get back to sex, even if it may not be as vigorous or satisfying as before the illness, is important. Couples are fearful: The healthy partner fears hurting the survivor, and the survivor interprets the lack of sexual advances from the partner as rejection.

These issues are rarely brought up by doctors in follow-up visits. And they may not be brought up by the survivor, who views them as too trivial to "bother the doctor with." This is wrong. They should be discussed, and if need be, the patient can be referred to a sex counselor or a support group composed of others who have been through a similar cancer experience. One breast surgeon has an unequivocal "do ask" policy. At a follow-up visit, six months or so after mastectomy, he asks the patient about a return to sex; if the answer is an embarrassed no, he takes out his prescription pad and writes "Sex Tonight." This breaks the ice with humor, but it also says to the patient and her partner that it is okay to have sex.

Auchincloss feels that women, as cancer survivors, feel less sexual for quite a while, though they may want to be held and feel closeness. She says:

Women often push themselves to try to be sexual again faster than they want to be because they're worried about their husband or partner. It's similar to what often happens after pregnancy. A lot of women who are pregnant and nursing will happily tell you that they feel they wouldn't mind not having sex for a long time, because their testosterone level is practically zero after nursing for six months. But they have sex sooner because they feel it keeps the relationship from falling apart.

When the problem has a direct physiological basis, sex counselors who are experienced at working with people with cancer and cancer survivors, as well as medical specialists such as gynecologists and urologists, can help you find a solution to a sexual or fertility problem.

One valuable resource, not widely known, is an organization started by Dr. Lucy Waletzky, a psychiatrist and a major advocate for attention to the human side of cancer. Dr. Waletzky recognized several years ago that people with disabilities had few chances for normal dating and finding partners. She founded DATE-ABLE to create opportunities for those who might otherwise find it difficult to seek and find others with whom they might share an intimate relationship. DATE-ABLE has spread from Washington D.C., to other cities and serves those with disabilities as an important source for maintaining self-esteem and sexual-identity. DATE-ABLE is open to people with any long-term disabilities from their surgical treatments who might be socially isolated.

Resources for survivors

Increasing numbers of resources have been developed that offer assistance in all the main areas of life: physical, psychological, social, work, and sexual. The National Cancer Institute (1-800-4-CANCER and the American Cancer Society (1-800-ACS-2345) are good first calls for advice. The Post-Treatment Resource Program at Memorial Sloan-Kettering Cancer Center in New York, serves as a center for information and advice in all these areas. Cancer Care, Inc., also in New York, is increasingly using telephone and telecommunication to provide advice and guidance on issues of concern to survivors. Y-me is a national organization with a hot line for giving advice. SHARE in New York, and Gilda's Clubs in many cities, are excellent organizations that can help you find resources in your own community.

The National Coalition for Cancer Survivorship is a growing powerful voice for advocacy, based in Washington D.C. Membership provides access to its newsletter, publications, and telephone contact persons. Its publications are outstanding on specific issues such as work discrimination. National advocacy groups for survivors of breast and ovarian cancer and, more recently, prostate, lung and oral cancer, suggest that people are recognizing the value of the grassroots, personal support given by other people with the same problems. These groups provide hope, personal meaning, a sense of control, and the all- important social support, which not only will enrich the quality of life, but may improve patient's physical health as well.