Two years after Susan Leigh became a cancer patient in 1972, she hid herself away in a little house in the Arizona desert built for her by her father and brother. Isolated and depressed, this health professional -- a nurse who had seen tough service in Vietnam -- did not feel comfortable out in the world. She did not want to expose herself and her Hodgkin's disease to friends; she certainly did not want to discuss her aggressive treatment or her fears with chance acquaintances.
"Things have made a 180-degree turn since then," says Susan Leigh, now a cancer survivorship consultant, researcher, horseback rider and amateur photographer, who is working at a Tuscon cancer center to set up a survivor's program. "It's a coming-out-of-the-closet situation."
I agree. Though I'm not quite as "old" a survivor as Susan (13 lucky years instead of 16), I too am sure that today's cancer patients differ significantly from those of even a decade ago. Most expect to survive. Instead of resigning themselves, submissively or bravely, to the fates, many, after an initial rough shocked period, set about fighting doggedly for their lives.
They search. They explore. They learn about different treatments and investigate new ways, working hard with others for the right to enjoy the rest of their lives -- to achieve what they and their doctors call "quality time."
So you see them scheduling radiation treatments at 7 a.m. in order that they not be late for work. Or going for chemotherapy on Fridays, so they can get home more easily afterward without disrupting office routines. Or, later on, traveling to remote places with special medical kits in their suitcases for emergencies (and, like me, never opening those kits). Or going into the wilds on special Outward Bound programs.
You seldom see them hiding anymore, even if they have suffered disfigurement or disabilities. You see them exchanging what one doctor calls "war stories" with fellow patients in support groups. As Sally Henderson, a 14-year survivor from Charlotte, N.C., put it, "We're able to talk about it now. We slug it out in the open."
There are exceptions, or course: patients whose particular lethal cancers give them little time and little chance to fight; others whose lack of resources or education prevents them from taking advantage of new approaches; some who would rather try to forget the whole thing; a few who prefer -- for whatever reasons -- to adopt a dependent, invalid stance.
But I meet more and more people like Sally Henderson -- or almost like her. She had her first cancer -- bilateral breast cancer -- in 1973. In 1979, she had colon cancer; in 1981, a completely different kind of cancer, melanoma of the eye. "I lost my right eye, which was a very difficult loss," she reports matter-of-factly. In 1983, she had lung cancer.
"Not much left," jokes this short, energetic widow, in her southern drawl. But she makes good use of what is left, walking 3 1/2 miles five days a week (at least in good weather) and confessing, "Natalie, I've met a wonderful new man. I'm in love."
Describing her job as coordinator of CAnCare, she stresses that this organization's professionally trained volunteer-members are cancer friends, rather than counselors, who give similar fellow patients (matched in age, in gender, in disease) support and encouragement.
One she's proud of is John Jones, whose leg was amputated at the hip six years ago. This golf-playing accountant drives his own car (using a left-footed pedal) to visit people who have just lost their legs. ("If a patient has 'phantom pains,' " he reports, "I talk with him and advise him to do what I did: fight with your brain to convince your mind that your leg is gone, then those twinges will diminish.") On the golf course, he found his prosthesis cumbersome, so he learned to play -- and became a center of attraction -- balanced on his right leg.
When I first got cancer in the early '70s, such a survival style was rare indeed. Now a California patient, Betty Slater, a friend who had the new lumpectomy with radiation a few years ago, admits, "I'm not surprised when people live on like us, leading good gutsy lives; I'm surprised when they die."
And Sister Rosemary Moynihan, the social worker who supervises the patient-to-patient volunteer program at Memorial Sloan-Kettering Cancer Center in New York, adds that her "older" volunteers used to consider their return to a functioning life style "magic;" today the "younger" ones simply ask: "When do we begin fitting in again?"
What happened? How did this attitude change come about? Most agree it has resulted, first, from an improvement in the medical outlook of not all but many cancer patients. Doctors simply have more to offer them -- be it earlier diagnosis, or more effective and precise treatment. When I had my first mastectomy in 1974 (shortly before Betty Ford's), I thought I either would be cured or die in about two years, just like my grandmother, who got cancer at about the same time of her life, and in the same site, as I did.
Today many people find the concept of "survival" more useful than that of "cure" and feel that this survival begins at the moment of diagnosis, rather than at the traditional fifth anniversary of that moment.
Whether the actual number of survivors is growing is a matter of statistical controversy. Be that as it may, some people with some kinds of cancer are doing well. The fraction of all patients who have reached the five-year benchmark is 49 percent (for those under the age of 55, it is 59 percent), according to the National Cancer Institute. And after three operations, two bouts of radiation and intensive chemo and hormone therapy, I hang in more securely, knowing there may be still more goodies in -- as one of my doctors put it -- "our therapeutic armamentarium," should I be unfortunate enough to need them.
What's more, I have the bittersweet knowledge that patients who get breast cancer today have a variety of options open to them I did not have (including, perhaps, keeping their breasts). And I must live with the uncertainties of being part of a fledgling group. As my doctor put it: "We are just beginning to have experience with long-term survivors like you."
An improved medical outlook is only part of the story. A revolution in attitudes has finally reached once-passive patients. Civil rights, women's rights, consumers' rights, human rights, growing interest in and candor about medical matters and preventive health care -- all these have helped empower survivors, giving them the feeling that they can have at least a hand in their own destiny.
Pat Fobair, a senior Stanford University Medical Center social worker and cancer counselor who attended a national conference last fall, nine days after her own breast cancer surgery, feels this attitudinal revolution "leaves survivors in a much lighter place than they were 10 years ago -- with less stigma."
Stigma! I asked my late father, in his eighties about eight years ago, to help me fill out an epidemiological form for the National Cancer Institute. Did any of his aunts and uncles I hadn't known well have cancer? "Not that they said," he answered.
Certainly the stigma of cancer has not completely disappeared. Still, it has dimmed, enabling public figures and other survivors to speak out about their cancer experience -- to each other and to the world at large. Like me, they even write books or appear in films about it. And they continue their careers and their social lives, and plan, however cautiously, for their futures. (A hot topic at a recent national survivors' meeting was this personal ad in a magazine: "Sincere gentleman with cancer in remission seeks female companion with same for weekly dinners and pleasant conversation.")
Survivors shop for doctors and treatment centers, seeking compassionate attitudes as well as technical excellence. When their health insurance permits it, and when they know about supportive services, they seek those too. And often they shop for non-traditional therapies, which range from old-time pain and stress palliatives, like hypnosis or acupuncture, and newer diets and imaging techniques, to south-of-the-border "cures."
Washington Hospital Center social worker Annette Jolles insists that awareness is an important part of this picture. Many patients come into her cancer clinic, she reports, ready to die. They have not read any of the current books and articles about survival; they are unfamiliar with any options, much less positive ones. They are, as the old saying goes, "getting their affairs in order." But they can be educated successfully, according to Jolles. Within a short time, they, too are trying to make every day count.
Still, these new attitudes have created new problems for some cancer survivors.
First, a confusing plethora of choices. Survivors can grow dizzy assessing the choices they must continue to make. Whether they are giving their "informed consent" to a different treatment or taking Cousin Bette's advice to try biofeedback or a macrobiotic diet or even deciding to go back to work or have a baby, survivors know they can make mistakes. Very often they need guidance and support.
Responsibility can be a burden as well as an asset. Cancer survivors must work hard to create a life style that is both realistic and comfortable for them. They may not have as much energy as they once had; they must learn to pace themselves and redefine their priorities. They must keep their spirits up in the face of nagging anxieties about the effects of cancer and its treatment ("Doesn't that cough mean lung cancer, that headache brain cancer? What is protecting me now that they've stopped chemotherapy? Will I be as sexually attractive as I used to be? Will I be able to have the family we planned?").
At times, survivors must adjust to permanent disfigurement or disabilities, from the loss of a breast -- emotionally disturbing but easy to mask -- to losing a voice box and having to communicate through the strange new tones of esophageal speech. Not everyone is as outgoing and self-reliant as the one-legged golfer.
Some find themselves feeling anxious and blue just when others expect them to be thankfully smiling through each day (such expectations are "garbage," says Memorial Sloan-Kettering's psychiatry chief, Dr. Jimmie Holland). These survivors may feel nostalgic for the early days of diagnosis and hospital treatment, when it was acceptable to feel or even act sick, and they were more apt to get sympathy and concern than curious glances and tactless remarks. Usually they feel less lonely and less different when they can exchange tips and ideas with other survivors in the same boat.
The stigma of cancer may have diminished, but it has not disappeared. Survivors still have a multitude of problems getting (beware of that "previously existing condition") and holding on (watch out if you change jobs, move or divorce) to the health insurance that is essential to their proper treatment as well as their peace of mind. They may have difficulty in the workplace, too, where employers fearful of "The Big C" ("Will I catch it?" "Why train her when she might die in six months?"), hesitate to hire or promote them; they may have to settle for work they would not have dreamed of doing before.
Some problems, like discrimination in health insurance and employment, require changes in social policies. Others can be eased through organized support systems -- hotlines, survivor centers, volunteer survivor-to-survivor programs. One cause for optimism: the creation two years ago of the National Coalition for Cancer Survivorship, a network of survivors and those concerned for them. Founder Dr. Fitzhugh Mullan, a physician and 12-year cancer survivor, says that when he talks about NCCS, he keeps coming back to the notion of "the veteran helping the rookie -- a process I find makes my cancer experience more useful to others and more acceptable to me."
Susan Leigh, who now serves as NCCS secretary, remembers that just a few years ago, when she had complaints, concerns and fears, "I was patronized and told not to worry. I meekly believed that I should be grateful just to be alive; that I didn't deserve any more attention."
Now, she feels a "sense of camaraderie" as she works with members of a "new minority" of people who were "never expected to survive so long."
Natalie Davis Spingarn, a Washington writer and consultant, is the author of "Hanging In There: Living Well on Borrowed Time." She recently was named to the board of the National Coalition for Cancer Survivorship.
The National Coalition for Cancer Survivorship (NCCS), 323 Eighth St. SW, Albuquerque, N.M. 98102. (505) 764-9956.
Percentage of patients surviving 5 years.
SITE ------------1960-'63 -- '74-'76 -- '79-'84
COLON -----------43 --------- 50 ------- 54
SKIN ------------60 --------- 78 ------- 80
OVARY -----------32 --------- 36 ------- 38
PROSTATE --------50 --------- 66 ------- 71
HODGKIN'S -------40 --------- 71 ------- 73
NOTE: Counting methods changed in the early '70s, so comparisons to the '60s are imperfect. Figures for '60s include only whites. Figures are rounded.
SOURCE: "Cancer Trends, 1950-1985," American Cancer Society