Running Against Cancer

By Philip Elmer-DeWitt

Dawn Euton had cancer a long time ago -- 27 years ago, to be exact. As a four-year-old she was treated for Wilms' tumor, a malignancy of the kidney. Though the disease never returned, the fear and stigma have not gone away. In high school her classmates acted as if they were scared to be near her. She was rejected every time she applied for medical insurance -- even to cover the cost of bearing a child. And vivid memories of the childhood terror still flood back whenever she goes for a checkup and sees the same woman in the black pumps and beehive hairdo who administered the chemotherapy a quarter- century earlier. "I just stare and stare at her," says Euton. "I can't help myself."

The special problems of Dawn Euton and the growing numbers of others who have been successfully treated for cancer are in the spotlight now as never before. For that they can thank Paul Tsongas, the first presidential candidate to run openly as a cancer survivor. Although Tsongas has been cancer-free for more than five years, the specter of his bout with non-Hodgkin's lymphoma in the mid-1980s has continued to shadow his campaign, even more so since his candidacy has begun to enjoy some success. No sooner had he won the New Hampshire primary than a lead editorial in the New York Times said voters needed a "firmer fix" on whether his "dread disease" might return.

Today more than 7 million Americans have been treated for cancer and survived, a number that is expected to swell to 10 million by the turn of the century. Three million have been cancer-free for at least five years, a time marker many cancer researchers consider an important milestone on the road to a complete "cure." Yet as a growing literature of articles and books by cancer survivors makes clear, the challenges these people face after the treatment is over are nearly as great as those posed by the disease.

Most cancer survivors strike the same general themes: anxiety, ostracism, lost relationships, trouble at work and difficulty in getting adequate health insurance. The stigma long attached to cancer is only slightly diminished in the age of AIDS. Cancer is to the 20th century what tuberculosis was to the 19th, wrote Susan Sontag in Illness as Metaphor. In the popular imagination, it is not just another disease but the embodiment of evil. In some European countries, it was a common practice for doctors to lie to their cancer patients. Physicians would give the diagnosis to the family but not to the victim, as if giving breath to the word could do physical harm.

But these superstitions and taboos date back to the time when there were no effective treatments and a cancer diagnosis was almost invariably a death sentence. Even in the 1930s, less than 1 cancer victim in 5 was living after five years. Steady progress over the past few decades has changed that calculus dramatically. Today the cure rate for cancer approaches 50%, and for many forms of the disease, it is 90% or higher.

Consciousness has not kept pace with oncology, however, as Ray Ritchie can attest. Ritchie, 28, from Porter, Texas, comes from a long line of fire fighters, and the day he applied to join the Houston fire department was one of the happiest of his life. But though he passed every test, including the physical, he was rejected. Reason: four years earlier, Ritchie had cancer -- the same type of non-Hodgkin's lymphoma that struck Paul Tsongas. The department's guidelines, modeled after those of the U.S. military, barred anyone who had a history of cancer.

Ritchie sued the Houston fire department under the Federal Rehabilitation Act of 1973, the first time that law was applied to a cancer victim. In 1988 a federal court found that Ritchie had indeed been discriminated against. It also ruled that he was able-bodied, ordering the department to take him in and pay him back pay and benefits. Says Ritchie, now a full-time fire fighter: "I can do anything that anyone else can do."

One of every 4 cancer survivors has faced some form of job difficulty, ranging from reduced wages or benefits to summary dismissal. The Americans with Disabilities Act of 1990, which is being phased in this year, will give cancer victims explicit federal protection against on-the-job discrimination. That part of the law was largely the result of spirited lobbying by a growing network of grassroots survivor organizations. The National Coalition for Cancer Survivorship, an umbrella organization based in Albuquerque, N. Mex., now boasts the membership of 400 different groups across the U.S.

The new law will not address all forms of discrimination. "If you have cancer," says Irene Card, insurance adviser to the NCCS, "no one wants to sell you health or life insurance." The situation is so grim that many doctors advise their patients who have coverage through their employer (or their spouse's employer) to never, ever change jobs. This leads to predicaments known as "job lock" or "marriage lock."

Just as worrisome are the possible long-term physical effects of cancer treatments. The worst moment for Dawn Euton was when she and her husband decided to start a family and learned that chemotherapy can make survivors sterile. As it turned out, Dawn was lucky: her child, a boy named Eric, is now 14 months old. In a study of long-term cancer survivors being conducted by Dr. Hubert Ried at the M.D. Anderson Cancer Center in Houston, 125 out of 800 patients have had children, and there is no evidence of any ill effects being passed on to the offspring.

One major concern is that cancer therapy may cause long-lasting brain damage. Dr. Daniel Hays at the Children's Hospital of Los Angeles is tracking the life histories of 1,000 childhood-cancer survivors with an eye to their intellectual development. Among subjects who are now older than 30, the only group that falls significantly below the norm is former brain-tumor patients, some of whom have lasting social, economic or psychological problems. But not all. About 10% report salaries of more than $50,000 a year. The younger patients may not fare as well. During one period in the past, victims of childhood leukemia were given prophylactic radiation treatments directed at the head. A number have suffered small but permanent reductions in IQ.

Another lingering fear is that the treatment of the original cancer will trigger a second, perhaps more devastating malignancy. These so-called secondary cancers are a direct result of the powerful drugs and radioactive fields used to kill cancer cells. Susan Leigh, 44, an oncology nurse from Tucson, is convinced that the breast cancer she developed in 1990 arose from the radiation treatments she received for Hodgkin's disease 20 years ago. "They are going to have to start teaching survivors what the late effects are," says Leigh. "We're going to have to be followed for the rest of our lives."

Fortunately, cancer treatments are constantly being improved. Radiation doses can often be more carefully targeted than in the past, and researchers are finding both new, less toxic anticancer drugs and ways to use the old medicines more judiciously. The refinements in therapy should result in fewer long-term side effects.

The chances that Paul Tsongas will suffer a relapse or a secondary cancer are difficult to gauge. After conventional treatments failed to eradicate his disease, he underwent a more radical procedure that is too new for doctors to have data on long-term survival rates. The procedure, known as an autologous bone-marrow transplant, was designed to overcome the basic limitation faced by all conventional cancer therapies: in doses sufficient to do their job, they can destroy the bone marrow, the mother lode of all blood cells, red and white. By removing a portion of the bone marrow (and purging it separately of tumor cells), physicians can go on to deliver otherwise lethal doses of radiation and chemotherapy. Then they rescue the patient from certain death with a reinfusion of the undamaged marrow.

Cancer survivors cheer when they hear Tsongas speak of the moment on "day zero" that he watched his bone marrow -- and his life -- being pumped back into his body. His candidacy has encouraged other survivors in the same way that wheelchair athletes cheer amputees and paraplegics. "It excites them to know that there's someone who's willing to talk about the disease, who's not afraid to say he's had cancer," says Peggy Baker, director of the cancer- survivors program at the University of Chicago Hospitals.

But there is something about Tsongas and the other cancer survivors that reverberates beyond the success or failure of this particular presidential campaign. They share a remarkable optimism, a feeling that their pain-filled battles and close brushes with death have lifted their lives out of the ordinary. If cancer is a metaphor, as Sontag suggests, it is not just a metaphor for death and dying. The message coming from the cancer survivors is that their terrible disease has a capacity to inspire hope as well as dread.

CHART: NOT AVAILABLE

CREDIT: TIME Graphic by Steve Hart

[TMFONT 1 d #666666 d {Source: National Cancer Institute}]CAPTION: The Chances of Survival

With reporting by J. Madeleine Nash/Chicago and Dick Thompson/Washington