Survivorship: A New Movement Among Cancer Patients : But Issues of Recurrence, Follow-up, Checkup, Long-Term Side Effects Are Major Concerns
Look at any group of 100 people. Perhaps they’re part of a crowd of shoppers, fans at a game or diners in a restaurant. Of those 100 people, by recently calculated odds, two are survivors of that loosely cohesive family of diseases with the terrifying name: cancer.
These two of every 100 compute to an estimated 5 million people in the American population.
By various estimates, about 3 million of the 5 million survivors may be called cured of the cancer immediately in question. Another estimated 2 million are not cured but are living with cancers that are in remission, progressing slowly or which have not progressed far enough to be disabling or fatal.
There’s no finish line tape at the end of five years for the survivors. The definition of survival coming into widespread use is that it is an ongoing process that starts the day of diagnosis. There are no increments (like survival for five years), only a continuous process of living with the disease or its aftereffects.
Last Leg of Strategy
The survivors are part of what many experts believe is a crucially important though publicly little-known last leg of a three-element cancer strategy of which treatment and prevention are the other components.
The third element is survivorship, an increasingly prominent issue and movement that may soon be on a par with treatment and prevention. It emphasizes what its small cadre of researchers identify as two key concepts that may be at odds with cancer’s public image.
The first is a semantic one seemingly involving verb tense: Should a person alive after cancer diagnosis and treatment--for one month, five years or several decades--say he or she had cancer or has cancer? Increasingly, cancer specialists are emphasizing that the correct tense is the present since, even for a person who has been rendered disease-free, the aftermath of cancer is a lifetime.
Survivorship, these experts emphasize, is a reality of worry about recurrence, greater than average attention to follow-up checkups and the like, concern over the long-term side effects of the often toxic treatments that were necessary and life-saving and the reality of living in a body that may have been scarred or disfigured. Much of this hasn’t been terribly relevant until the last 10 years or so because cancer patients seldom lived long enough for these concerns to matter. All of this is changing.
The second major concept is an attempt to get the public to redefine at least one vital aspect of cancer. This involves a change from thinking of cancer as a strictly acute disease that either quickly kills the victim or is cured in short order to perceiving cancer as a chronic disease, more in the class of diabetes or arthritis. With this quiet evolution, the first national organization to address the concerns of cancer survivors has been formed. Set up in a small office in Albuquerque, N.M., the National Coalition of Cancer Survivorship was the product of a planning conference involving grass-roots patients’ rights organizations, researchers and Dr. Fitzhugh Mullan, associate professor of public health at Johns Hopkins University, who is one of the nation’s most medically prominent cancer survivors. Mullan is president of the new organization’s board.
Out of the Closet
A magazine tailored for cancer survivors--called Cope--began publication last year and has a circulation of about 150,000, according to its Denver-based publisher, Merrill Hastings Jr., whose wife is a breast cancer victim. Hastings said the magazine was founded on the premise that “the whole matter of cancer has come out of the closet. The attitude just a decade ago was, ‘Don’t even tell (patients) they have cancer.’ Now, you tell them up front and help them with the quality of life after treatment.”
“We talk a lot about the veteran helping the rookie, which is a very important two-way street,” Mullan said in a telephone interview from Baltimore. “The rookie (the newly diagnosed patient) is in need of help and the veteran (who has months or years of survival behind him or her) has valuable perspectives. But for the veteran, making use of the cancer experience can, itself, be healing.”
The situation today, said Dr. Patricia Ganz, a UCLA tumor specialist and researcher on survivor issues, implies that times both have changed and are changing. “The prior view,” she said, “was either you get cancer and you’re diagnosed and found to be incurable or you get cancer and you get it cut out and you never talk about it again.
“(What we find today is) there is instead this middle ground of time where, yes, you have had cancer, but you must be followed up and cared for, or you live chronically. Many women survive with breast cancer for 15 or 20 years, as if they were arthritis patients.”
Last weekend, a two-day conference was held at a hotel near Los Angeles International Airport that brought together--perhaps for the first time in such a forum--researchers working in the burgeoning field of measuring, studying and modifying the issues cancer patients face after they are diagnosed and treated.
These range from civil rights concerns like insurance and employment discrimination to unknown long-term effects of such treatments as chemotherapy and radiation. The therapies destroy tumors but are suspected to have the potential to result years later in such diverse problems as compromised fertility and learning disorders. Latent effects of heavy metal toxicity caused by chemotherapy (a key cancer drug is based on platinum, for instance) on the central nervous system and aftereffects of massive exposure to X-rays are also the cause of subsequent problems in the survival period.
In the dispute over the semantics of cancer--whether a survivor can ever say he or she has “had” cancer or whether one should still use “has,” even years after diagnosis--one of the debate’s key focuses is President Reagan.
Weeks after the President’s July, 1985, surgery for colon cancer, Reagan himself emphasized that he wasn’t ready even to concede he had “had” the disease.
“The whole thing has been portrayed as that I was a sufferer of cancer, that I had cancer,” Reagan told reporters in an interview in November, 1985. “The truth of the matter was I had a polyp. So in reality, the only real illness that I suffered in any way and at any time was the incision. My healing was not a healing of cancer. Mine was a healing of a 10- or 12-inch incision.” The President has also dismissed as inconsequential the subsequent removal of a small skin cancer from his nose. White House spokespersons were unresponsive to inquiries last week about what role--if any--Reagan sees for himself in the cancer survival movement.
“I’ve been a little disappointed that he (Reagan) has not been exemplified as a cancer survivor,” Ganz said. “He’s a very good example of somebody who has their cancer treated and they go about their business. But that’s not to say they (even the most functional survivors) don’t have problems and I am sure he’s had problems. He could identify himself as a cancer survivor. Instead, it’s (not even) ‘I had cancer,’ instead of ‘I have cancer.’ ”
Mullan shares the disappointment. “The fact that he (Reagan) has continued his career almost without breaking stride, in spite of being a cancer patient, is an important message,” he said. “The message is that you can live on after cancer and be active and productive.
“But there’s also an element of denial in his approach. He and his spokespeople seek to limit what they consider to be the potential political damage done by having cancer. They ignore and belittle the fact that he’s had cancer and pass it over every opportunity they get. Certainly, they do not see it as a positive point of political visibility. This is a great disappointment. His very grittiness should be celebrated.”
“I think what’s happening (with the survival movement) is that it’s kind of like any new trend,” said Patricia Fobair, a Stanford University researcher who has been active in a variety of survivor issues--most notably involving Hodgkin’s disease, a type of cancer that is increasingly curable.
The weekend gathering was organized by a group of experts from UCLA, Stanford and the California division of the American Cancer Society. It was intended to emphasize, said UCLA’s Jerome Cohen, a professor of social welfare, that questions of surviving cancer are “not so much a separate issue for those do-gooders who have an interest in such things, but an issue for the serious scientists who are interested in cancer.”
Cohen and three other UCLA experts were interviewed several days before the conference. The interviews, reports at the conference and other recent research disclosures brought these new observations about survivorship:
- There is apparently a marked difference in the quality of life after each of two major forms of testicle cancer--seminoma and non-seminoma. The distinction is based on characteristics of tumor cells in the two types. Seminoma patients, noted UCLA researcher David Wellish, “had a much easier time” after their treatment and the study established that the long-term consequences of the two diseases are “very different.”
But for all survivors of testicle cancer--common in men 20 to 35 and now curable in more than 95% of all cases provided the disease has not seriously spread--survival leads to questions about body image and sexual identity that seem to change with a man’s age. Men cured in their 20s, said Wellisch, as a rule are not concerned about fertility issues. “They are out there, on the campus or in the community, hanging out,” Wellisch said, “and they want not to make babies.”
But for men in their 30s who have been cured, a whole new mix of emotions surfaces, Wellisch said based on a recent study of 87 testicle cancer victims and 43 of their sex partners. “Guys in their 30s wonder very much, ‘Am I going to be acceptable? Am I damaged goods? Am I going to be able to procreate or is that aspect of my life closed off to me?’ What we’ve discovered is that a lot of these guys stop dating. They stop trying. They drop out (of the search for a relationship).”
Not Undesirable
Ironically, partners of cured testicle cancer patients do not perceive them as mutilated or undesirable. Testicle cancer treatment invariably involves removal of the diseased testicle and fertility is usually lost entirely or substantially reduced.
- For breast cancer patients, said Ganz, who recently reported preliminary results of a study of the aftermath of treatment for 31 women who had radical mastectomies and 19 women who had less radical so-called lumpectomies, unexpected aftereffects commonly occur months after treatment is successfully completed. For instance, said Ganz, swelling of the arm emerged as an unanticipated problem 12 months after surgery for nearly half of the women. The swelling was the same, irrespective of the surgery used. “Many of the surgeons doing lumpectomy are not aware that people are having this swelling problem,” Ganz said. “They figure, ‘We’re not doing a radical, so you’re home free.’ But there are many complications.”
An equal proportion of the women reported unanticipated weight gain. “It’s not understood why,” Ganz said, “but many of them were obese to begin with and breast cancer is associated with a high-fat diet. It might even be that they stopped going to aerobics classes. We should routinely be advising women who have had breast cancer that they should eat a low-fat diet.”
One of the cruelest realities for breast cancer patients, said Ganz, is what she characterizes as discrimination in which insurance companies pay for breast removal surgery to fight the direct effects of the treatment but then balk at paying for breast restoration surgery months later. Plastic surgeons who perform such operations often demand payment in advance, which Ganz said may contribute to an observation that breast cancer victims report financial problems that often worsen nine months or a year after treatment.
A worse dilemma, she said, is insurance reimbursement for women whose reconstruction of a damaged breast also involved reduction in size of the remaining healthy breast to achieve cosmetic balance.
Separately, Wellisch is beginning a study of the daughters of breast cancer patients, trying to identify ways they respond to their mothers’ diseases. The findings may be important for prevention workers since daughters of breast cancer victims are at greater risk of getting the disease than women at large. “We’re asking about the emotional reality of how daughters react,” he said. “We’re asking what they do (in response to knowing of their mothers’ illnesses). Do they do reasonable things? Are they obsessed with it? Do they do too little?”
- For victims of several cancer types--most notably colon, lung and prostate cancer--comparison of a variety long-term problems suggests that cancer poses many of the same problems as arthritis, diabetes and long-term kidney disease. Cyndie Coscarelli Schag, another UCLA researcher, said data recently analyzed in a study of 500 patients who were successfully treated for colon, lung and prostate cancer led to the conclusions.
Schag said researchers found that more than a year after treatment, 44% of the colon cancer patients, 72% of lung cancer victims and 55% of those who had prostate cancer still reported problems with normal walking. Psychological distress, worry and anxiety afflicted more than a quarter of the patients even though their treatment was successful.
Significant long-term problems with aftereffects of chemotherapy and radiation therapy were reported by between a third and two thirds of the colon and lung cancer patients. All three cancers left their victims with problems of sexual dysfunction--53% for colon cancer, 61% for lung cancer and 72% for prostate cancer, Schag’s data showed.
Despite these problems, Ganz and Schag agreed, many cancer patients come away from the acute phase of their diseases somehow enriched by the experience.
“People’s perspectives change,” Schag said. “They may set different priorities in their lives. Certain things become important for them that weren’t before.”
PROBLEMS DUE TO BREAST CANCER Although more and more women are surviving breast cancer, they continue to face sometimes unexpected or recurring physical and psychological problems after they are diagnosed. UCLA researchers measured incidence of several such difficulties for 50 breast cancer patients. Percent of total patients encountering problems in months after diagnosis.
FATIGUE PERCENT 1 month 82 4 months 85 7 months 58 13 months 55 NEGATIVE BODY IMAGE 1 month 70 4 months 72 7 months 62 13 months 50 ARM SWELLING 1 month 42 4 months 44 7 months 26 13 months 46 PAIN 1 month 34 4 months 37 7 months 23 13 months 14 WEIGHT GAIN 1 month 18 4 months 33 7 months 32.8 13 months 46 DEPRESSION 1 month 63 4 months 66 7 months 47 13 months 37 ANGER 1 month 50 4 months 55 7 months 42 13 months 41 LESS SOCIAL ACTIVITY 1 month 38 4 months 45 7 months 33 13 months 18 JOB PERFORMANCE 1 month 37 4 months 37 7 months 21 13 months 18 BUDGET PROBLEMS 1 month 26 4 months 26 7 months 21 13 months 23
LIVING WITH CANCER Approximately two of every 100 living Americans are classified as cancer survivors, alive after having been diagnosed as having contracted cancer. A total of 500 patients who had survived colon, lung and prostate cancer were asked by researchers from the Veterans Administration and UCLA to rate special problems they encountered after treatment. Categories in this listing are some of those in which the cancer patients reported the most “significant” difficulties in living with their conditions.
PHYSICAL COLON LUNG PROSTATE Ambulation 44% 72% 55% Recreational Activities 35 44 34 Difficulty Working 24 28 12 Pain 20 31 16 PSYCHOSOCIAL Psychological Distress 32% 36% 25% Worry 35 40 26 Anxiety in Medical Situations 29 28 18 Body Image 27 18 18 MARITAL Communication with Partner 19% 30% 16% SEXUAL Sex Interest 33% 27% 31% Sexual Dysfunction 53 61 72 MISCELLANEOUS SUBSCALES Chemotherapy Related Problems 33% 48% 16% Radiation Related Problems 60 43 18 Dating 25 26 15
