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Survivors - Now What? Part 1

Granny

Kathleen Conway, a psychotherapist, developed lymphoma as a graduate student, and breast cancer in her early forties. Married with two young children, she wrote a remarkably honest story, Ordinary Life, of her reactions to having a mastectomy and chemotherapy. The book details her anger, her depression, and the feeling of having lost her "ordinary life." Written day by day, it describes the daily hassles and stresses of carrying on with her family's life turned upside-down. The stress was hard for her husband, who became fatigued, sometimes despairing, trying to support her while taking care of the children and working at his job. Kathleen was shocked when she read her diary, written a year earlier during her illness.

 

Certainly, I set out to write the truth about my cancer while I was still in its grip. I was passionate in my resistance to telling the story that other people seemed to want to hear-----of lessons learned, of cancer as a transformative experience. But having told my story, I now find myself startled by its fierceness, its raw and unrelenting character. I almost wish, when I read it over, that it had left me with more of a feeling of transformation.

When the experience of cancer and its treatment is over, it is easy to "rewrite history" and think of yourself as having been more wise, mature, and adaptive than indeed was the case. As with childbirth and other traumas, in retelling it you tend to color the experience as you want to remember it, and tell it to others in more acceptable terms. In fact, Kathlyn Conway said, "I doubt that I could write this book today [nineteen months later]. I no longer feel as raw as I did then.

Just as history books are written with the specific slant of the particular historian, so it goes with personal stories of illness. An account written as a daily diary is likely to be the most honest. And over time, some transformative ideas stay with survivors, some good and some "troublesome." These notions are so common, you could almost call them universals (although absolutes about anything are not possible, especially in relation to human emotions).

Brooke, had a mastectomy at mastectomy at fifty-six, followed by adjuvant chemotherapy (meaning that it was given as part of the initial treatment) for early breast cancer. She continued to work as an interior designer during the chemotherapy, despite being tired. She initially had a hard time adjusting to her "new body" and joined a support group for breast cancer patients and survivors. She found it helpful hearing others describe how they got past the hair loss and adjusted to wearing a wig. She began an exercise and diet routine to keep her weight stable, since women gain weight during chemotherapy and often find this an additional problem to deal with. Though she hardly wore makeup at all before her bout with cancer, members of her group suggested she wear more makeup and brighter clothes, both to keep up her spirits and to give her pale look more color. Her husband was very supportive throughout her treatment for cancer, and they both felt that they became closer because of the experience.

At the end of a year, Brooke's appearance and energy level had returned to normal, but her psyche had not. As the time approached for the landmark one-year follow-up visit to her doctor, Brooke recognized that she had suddenly become anxious and irritable and was sleeping poorly. She said, "I feel well, and I usually don't worry about my health. But when the flu was going around my office, and I started feeling achy all over, I thought, What if it's not the flu? What if the cancer's come back? I worked myself into a real panic. Then I started wondering, What if they didn't really get it all? What if I'm not cured? My husband tells me it's all in my head. There's nothing wrong with me, and I'm just obsessing". He says, "You beat it. Be grateful, and move on." "But I'm not sure. I called my doctor, and she said it was nearly time for my next checkup so why didn't I just come in now? I scheduled an appointment for next week, and I haven't been able to sleep ever since. All I think of is: What if they find something? The crazy part of this is: I feel fine. My life is great. I'm just so terrified that at any moment I could lose it all."

Brooke's story exemplifies a common phenomenon. It is expected that patients would be jubilant on finishing treatment, in fact, the opposite sometimes occurres. They can have a paradoxical increase in distress just after treatment, related to a feeling of vulnerability. Two main factors cause this new and unexpected anxiety: the fear that the cancer could come back now that they were without the protective effects of treatment, and the fear that they were not being watched as closely by their doctors.

Most cancer survivors typically experience what Brooke went through, wondering, "Did I have cancer, or do I still have cancer?" Another cancer survivor put it this way: "I think I'll never feel as confident about my life, myself, and the future, as I did before I had cancer." This common feeling in survivors is called the Damocles syndrome. According to the Greek legend, Damocles, a courtier to the tyrant Dionysius, the Elder of Syracuse, extravagantly praised his sovereign, who invited him to a sumptuous feast. However, during the entertainment, Damocles looked up and saw that Dionysius had seated him directly beneath a sword that was suspended from the ceiling by a thread. For Damocles, this sword was a symbol of the precariousness of life and how one's fortune could shift from being in favor at court to falling out of favor, causing the sword to fall down one's head. For people who have had cancer, that sword represents the frailty and precarious nature of life itself. They continue to believe that the threat of recurring cancer and consequently, the threat of death, is always looming over them.

Usually, this fear slowly recedes as the time from diagnosis and treatment increases. But the fear exacerbates just before follow-up visits, scans, and tests for cancer. It also may reappear around significant anniversaries related to the cancer, such as the day of the diagnosis or the surgery.

"I can't get the cancer out of my mind. It keeps coming back with the silliest reminders," said Martina, a young woman who survived uterine cancer. Rather than silly, these are normal and ubiquitous concerns; unfortunately, they "go with the territory." They, too, get better over time. Dr. Christopher Gates, a psychiatrist, helps the person to conceptualize these fears by saying:

Just imagine with me that your frightening thoughts are like voices on a radio. They can be controlled by changing the volume. When the volume is up too high, the noise (your fear) is so loud you can't hear or think of anything else. But you can turn the volume down, so low that you still hear the noise (your fear) in the background, but it doesn't bother you so much, and you can concentrate on other things.

Man

This "mind-gimmick" is helpful since it also implies that those "gremlins" are always going to be there after cancer. They never completely go away, but they can be turned down so they can be tucked into the far corner of your brain where they aren't "noisy."

Even individuals who went through their treatment years ago may still find it frightening, even terrifying, to go to their doctor. Other events may reawaken these fears, such as media coverage of the illness or death from cancer of a prominent figure, as when George Harrison died from cancer. On the other hand, cancer success stories such as that of Tour de France cycling champion Lance Armstrong, a testicular cancer survivor, can inspire and give hope to people with cancer and their families.

It's best to approach predictable, anxiety-provoking periods by talking about them with others: family, friends, support group members, or a psychotherapist or counselor, if the anxiety interferes with normal activities. It is helpful mentally to "count to ten" and recall, rationally, that your tests have been negative, you feel fine, and the fears are coming from an external stimulus. Severe and persistent fears, however, should prompt a consultation with a mental health professional, with whom you can try some mental relaxation techniques. If anti-anxiety medication is needed, consultation with a psychiatrist will be helpful.

Am I a cancer patient or a cancer survivor?

There is a lot of debate about who qualifies as a cancer survivor. Researchers who study long-term effects of treatments define a survivor as a person who completed treatment at least five years ago and has no sign of cancer. But the National Coalition for Cancer Survivorship (NCCS), an advocacy group composed of cancer survivors, says that a far better way to define survivor is to assume that one is a survivor from the day of diagnosis. Dr. Fitzhugh Mullen, the physician and cancer survivor who established the NCCS, says that there surely are different "seasons of survival," but each is, indeed, survival. The first season is surviving the treatment; the second season is beginning to return to normal life; and the third is the long-term adjustment during which the cancer comes to be viewed as an episode in the bigger context of one's life.

What "psychological baggage" do you carry around with you? What are your worries about the possible long-term medical problems? What happens to family relations? How does having had cancer affect your perspective on life and its meaning? What happens to your sense of the future? What happens to your ability to become close and intimate with someone? It is safe to plan a marriage and have children? This baggage is the downside of the remarkably good news that there are, today, nearly eight million cancer survivors, as more cancers respond to new therapies.

The question about the human side of survivorship can be placed under the larger topic of "quality-of-life" issues: How well are you able to function in physical, psychological, social, work, and sexual terms, compared with how you functioned before your illness? One of the breakthroughs concerning the human side of cancer has been the ability to measure and put realistic numbers on a person's functioning in these domains of living, which represent, collectively, quality of life. Now when a new treatment for cancer is tested against an older one to determine which of the two treatments is better, doctors not only look at how much longer people survive with each treatment, but also determine how well they have survived during that time.

The interest in the quality of life also extends to the study of survivors. In fact, the National Cancer Institute established an Office of Cancer Survivorship in 1997 to give proper attention to this area.

In the days when cancer was almost uniformly fatal, a survivor was so rare that any complaint by the patient was countered with "You should just be thankful you're alive." The focus of the oncologist then was to reverse the balance that most often resulted in death and make it possible to become a survivor. They had a little time to delve into the problems that the few survivors had, like trouble getting a job because the assumption was they would die, sexual problems, or problems adjusting to physical losses, like a limb or a breast.

The picture started changing in the 1950s and 1960s, when a remarkable increase in survival from several tumors of children and young adults occurred. Suddenly, children with acute lymphocytic leukemia were being put in remission, and remained so years later following combination chemotherapy (several drugs given together). Between the mid-1960s and now, the five-year survival rate for Hodgkin's disease rose from 5 percent to greater than 90 percent for Stage I disease, owing to a combination chemotherapy regimen (called MOPP, for the names of the drugs used). Testicular cancer became largely curable in young men. With these changes came a new concern, one that had not been possible before: What were the problems associated with the treatments, and how could they be reduced? For example, early treatments for childhood leukemia included radiation to the brain to prevent the leukemia cells from being sequestered there, where they might re-grow at a later time, but it caused some children to have trouble with learning and performance at school. Could the radiation be eliminated and still effect a cure in the children? This has indeed happened.

White Hair

Chemotherapy for Hodgkin's disease caused infertility. Could every young man with Hodgkin's be asked to bank sperm, and could a regimen be found that did not cause infertility? Both changes have occurred: Teenage boys and men with Hodgkin's disease can bank sperm before undergoing high-dose chemotherapy. And the Hodgkin's disease MOPP regimen, which caused sterility most of the time, is being replaced by the ABVD regimen, which is as effective but does not cause sterility.

For the first time, the focus of medical efforts was on survivors: keeping the cure rates high, while reducing the negative impacts of treatments. It was during this exciting period of change in the 1970s that interest in psychological issues developed. It was a new era of concern for the human side of cancer.

The tyranny of statistics

One of the burdens cancer survivors often carry, is information about the statistics for survival for their particular cancer. The question so often asked by a person who receives the diagnosis of cancer is, "What are my chances, Doc?" No matter what the answer is, anything less than 100 percent survival (which is, of course, what everyone wants to hear) leads to the nagging fear of "which group am I going to be in, the 50 percent who make it for the 50 percent who don't?" The numbers that a doctor gives a patient are based on the expected average survival at a particular time, often five years. The trouble with statistics is that no one person is the exact "average." So the numbers become another monkey on your back, an added fear to deal with. Doctors want to be honest and sometimes give the range from the shortest to the longest likely survival; while they are telling you the truth, they can't tell you exactly where you will fall. You can't take the quoted average survival time too gloomily. It's an average, and patients are individuals, not statistics.

It's helpful to talk with survivors who, twenty years later, can describe the dire "you have six months to live" prognosis they were given. They understand the burden of the statistics they were saddled with. Many of these people have donated their time and energy to making sure that other cancer patients get good information, good treatment.

Natalie Spingarn is one such twenty-year-plus survivor of metastatic breast cancer. She is a writer in Washington, D.C., and the author of The New Cancer Survivors, which is an excellent book on the human side of cancer. She is a founding member of the National Coalition for Cancer Survivorship (NCCS), writing and speaking often as an advocate for patients.

Richard Block, founder with his brother of the H & R Block firm for tax preparation assistance, is a survivor of lung cancer of twenty-plus years. He was told, "Go home and write your will; there is no treatment for your problem." He refused to accept that verdict and, with his wife, Annette, sought out the best cancer centers. He was treated and is healthy and working hard to ensure that patients with cancer get accurate information. He and Annette established a center in Kansas City where patients are seen by consultants in surgery, oncology, and radiotherapy. Several years ago, he gave the National Cancer Institute the funds to start a service to provide updated information to patients on which centers have protocols to treat specific tumors. The result was the 1-800-4-CANCER telephone number, which is accessible, in user-friendly language, to anyone. He and Annette have written about their experiences, and are ardent activists. Richard feels keeping hope alive is a critical part of the human side of cancer.

There are many disease specific organizations of survivors who want to "give back" by helping new patients, and both benefit. Volunteers act as "buddies" or guides, who speak with the authority of having "been there." Consequently, they share their experiences and offer their tried-and-true advice on coping as well as practical tips, such as where to shop for wigs and prostheses, how to get ostomy appliances, and how to deal with fatigue and worry. And they offer that "gift of hope," by their very presence, as a survivor of the same cancer.

In a lecture at the Weil Medical College of Cornell University, Susan Sontag, author of Illness as Metaphor, spoke about how her experience with breast cancer, twenty-four-years ago, led her to write this important book. She was given a pessimistic prognosis but pursued aggressive treatment and is alive these many years later. She felt that the prevalence of cancer as a metaphor for bad things in society made the burden of cancer even greater for patients and survivors. Her writing and public speaking about her experience give testimony to the fact that statistics about prognoses can be pretty meaningless. She also decries the idea that personality could be the cause of cancer - or the cure. Cancer is just another disease and is better left free of such implications, she believes. "The bottom line is that statistics are just statistics. Prognosis are based on ballpark averages and should be kept in perspective, because each of us is unique".

"Am I cured?" is the big question for most survivors. Of course, everyone wants to hear the answer "yes!" Today, few oncologists are comfortable telling their patients they are cured, because it implies an absolute certainty that is anathema to these scientifically trained clinicians. They prefer terms like "likely cured" or "no evidence of disease" or "long-term remission." This approach often frustrates and angers patients, who want a sure answer. Here is one of those instances in which the profound uncertainty of living with cancer is deeply felt, and the doctor's words don't always reassure the patient. The desired assurance is withheld in the service of not promising something one isn't sure about. Hope, that sustaining feeling, is muted by the caution of the doctors.

Cancer survivors usually have follow-up visits scheduled every three months for the first year after treatment ends, and every six months thereafter, depending on the tumor, with repeated bone and CT scans. This sometimes creates the impression that the cancer is lurking about and the doctor is expecting it to reappear. There has been some debate as to whether survivors are followed at too frequent intervals. Given present knowledge, however, it is better to know early if the tumor has come back, so that something can be done. Consequently, we are caught in the vise of sacrificing the sense of security that would come with less frequent follow-up, for the repeated anxiety that precedes the more frequent follow-ups, which usually net negative results, but that would pick up early recurrence. We are left with finding ways to control the anxiety that accompanies the checkups.

Physical problems of survival: The downside of treatments

Scar Guy

Some cancer treatments produce few long-term, physical side effects, whereas others take a toll on your ability to function normally. These side effects of course, add to the psychological burden, based on what they are and what function they impair. These visible signs of cancer, with which people live out their lives, create a stigma: People perceive these survivors as "different."

Dr. Alice Kornblith, a research psychologist who has studied survivors, uses the concept of stigma proposed by sociologist Dr. Erving Goffman. He noted that the more people are obviously different than others, the greater it is for them to be stigmatized and isolated. The operations that produce visible changes in appearance and permanent disability, such as: limb amputation; mastectomy; surgery around the face and head; loss of the voice box; colostomy; removal of the cervix, uterus, or ovaries; and removal of the testicle, lead to more stigma.

Radiation and chemotherapy usually cause less obvious and visible changes, but these treatments may result in impaired function. For example, some chemotherapy regimens can result in damage to the brain, liver, or kidneys, as well as to sexual and reproductive function for both men and women, causing long-term problems. As vexing as these problems can be, they are sometimes the unfortunate downside of the treatments that make it possible to be a survivor.

A potential and devastating effect of both radiation and chemotherapy, is that they can, years later, result in second tumors. This explains the great interest in and increasing research into long-term effects, especially in childhood survivors, who can expect to live out a full life span. The Children's Cancer Group, a large cooperative group composed of most academic pediatric oncologists in the United States, is currently studying about twenty thousand children treated by protocols over the past decade. They will follow these survivors carefully to look for the factors associated with impaired function or second malignancies and impaired quality of life. This research will be the basis for altering treatment regimens to maintain the gains in survival but reduce the risk of future harm.

Karen Swymer is an inspiring cancer survivor who was diagnosed with Ewing's sarcoma in the right forearm in 1980, the day before her eleventh birthday. Here is her story in her own words:

My consciousness began on June 30,1980. The doctors asked if I had ever had the measles, chickenpox . . . then they told me what I did have. My mother looked at me and said, "If I could do this for you I would." And then I started chemo the day of diagnosis. After my first chemo, my parents carried me out of the hospital. I felt like a train ran over me. I had chemo every two and a half weeks. Then I did whatever it took to get back to school on Monday. I wanted to be around kids. I didn't want to interrupt my life. For two weeks we'd soar, and then for a week or so I'd be sick, and we'd cope with it. In those days there were no medicines to keep you comfortable like there are now. It was like a hell ride because I was so sick. I also had radiation every day for three months over the summer. I lost my hair for two years, from age eleven to age thirteen. That's a tough time to be bald. People who are in your little circle of friends know you and love you. But if I was at the movies or the grocery store, people would stare at me. I always held my head up high, but people remind you you're different.

Still, I had a wonderful little life. I played the flute. I was involved in student government. I was a normal child for all intent and purposes. When I was sick, people were not very open in terms of talking about disease. Families were very private. People coped very privately, particularly with pediatric cancer. Our family was like a little island. My parents and two sisters were always around me. I was never alone. After two years, my treatment was over. I went on to high school and then to Smith College. My cancer was behind me. It was something that made me different inside, but looking at me you'd never know. I worked extra hard, played hard, and loved twice as deeply. I loved every part of my life. I clung to my relationships, my future, and my family. I felt invincible. I felt that I'd seen worst life had given me.

After college, I lived and worked in Washington, D.C., at a public relations firm and then at a law firm. I started having discomfort in the arm where the sarcoma had been. It turned out to be a degenerative condition called necrosis, the dying of the bone. It was the result of the radiation I had received as a child. (When I received it, they were giving a lot more radiation in a larger area of the body than they do now. Over the years, they've learned how much is too much.)

So in the spring of 1993 they found a benign tumor in my elbow. So they reconstructed my elbow with part of my hipbone and put some metal hardware in there. I went off to law school in the summer. It was painful but I wasn't worried about being sick. Eventually it got worse to the point that I could barely hold a pen. They removed the ulna [a bone in the arm] to reduce the chance of my getting sick and reconstructed the entire arm. But two months after starting my second year of law school, I had a malignant tumor in my elbow. It was an osteosarcoma, a different disease. And the cancer had metastasized to both my lungs. My chemo was more vigorous, with three out of every five weeks in the hospital and then two weeks off, for a year and a half. It physically beat me down. I had the surgery removing the tumor from both lungs, and I lost my right arm.

I was on the pediatric oncology floor even though I was twenty-five years old, to stay with the doctor who had treated me as a child at the Jimmy Fund in Boston. It's very different when your doctor feels like your partner and listens to you and answers you. I don't think much about losing my arm. It encompasses so little of my time and energy and thought. I've taught myself to write left handed, and every so often I'll sketch and it makes me feel good. There's nothing I can't do. I just have to be more creative about how I do things. I don't feel limited in any way. It's a loss, but such an insignificant one to me. Recently, I went to get a key made. I was trying to put money back in my wallet one-handed. The guy at the store saw me and said, "I'm really sorry about it." And I said, "Worse things can happen."

I have peace of mind and heart that I did whatever it took to get better. Your spiritual presence comes forth and that's how you survive. Physically I looked horrendous, but spiritually you couldn't shake me. If God wanted me to do this every fifteen years, I wouldn't be too happy, but I'd do it because I've had a great life. Karen Swymer returned to Boston College Law School in 1997 and graduated in 1999. She recently started her first job as an attorney in Worcester, Massachusetts. She frequently visits children with cancer in the hospital to give them hope.

The American Cancer Society, under the direction of Dr. Frank Baker, a psychologist, is undertaking a study of fifteen thousand survivors of the major cancers to assess the quality of their lives years after treatment. It is heartening that research in oncology is now targeting survivors to determine their physical problems, their health, and their quality of life. This is a far cry from the admonition, mentioned earlier, given to survivors twenty-five years ago, not to complain about a thing because "you should just be thankful you are alive."

Survivors - Now what? (Part 2)