COVER

A MATTER OF LIFE AND HOPE

RAE CORELLI June 13 1988
COVER

A MATTER OF LIFE AND HOPE

RAE CORELLI June 13 1988

A MATTER OF LIFE AND HOPE

COVER

Much of the public discussion about cancer is impersonal, with frequent references to the state of “war” against the disease and “bulletins” from “the research front” announcing “breakthroughs” against “a stubborn enemy.” But the military imagery overlooks such unsung heroes—and casualties—of that battlefield as Jacqueline Fenton. On Oct. 30, 1984, at Sturgeon General Hospital in St. Albert, Alta., doctors removed a lump measuring two inches in diameter from Fenton’s left breast. That growth proved to be malignant, and two days later they removed the breast.

Then, in April, 1986,

Fenton developed a pain in her side that led her to seek help at Edmonton’s Cross Cancer Clinic. There, doctors discovered that the disease had spread to one rib.

On May 10, specialists began radiation therapy, only two days before Fenton and her husband, Dale, a Royal Bank computer specialist, who have two children, left for a new posting in Toronto. But Jacqueline Fenton had not escaped the disease: in March, 1987, doctors at the Toronto Bayview Regional Cancer Centre told her that the cancer had spread to her lungs.

Die: Fenton is one of the approximately 87,000 Canadians who, in 1984, learned that they had cancer. And the likelihood is that she will be one of the estimated 50,800 who will die of the disease this year. Certainly, she will not be among the roughly 65 per cent of women who are found to be free of disease five years after they have contracted breast cancer. Those yearly totals reflect the fact that, of all major diseases, none has been as thoroughly profiled statistically as cancer. In Canada alone, Statistics Canada, the federal health department, the Canadian Cancer Society, provincial treatment agencies and university research cen-

tres regularly publish revised cancer incidence, mortality and survival rates by site, sex, age and province.

But numbers alone only hint at the drama that surrounds one of the most malevolent and baffling of diseases.

The rest is found in the laboratories where scientists search for more effective treatments —and, ultimately, cures—in the crowded corridors of treatment centres and in the quiet bravery of such patients as 51-year-old Fenton.

After her Bayview diagnosis, months of chemotherapy followed. On Dec. 22, she completed a series of 18 weekly treatments—a course that allowed her to leave her home in Pickering, 35 km east of Toronto, for a brief vacation in Las Vegas in January. But severe pain soon forced her to return to hospital and, early last March, a bone scan revealed that the cancer had spread throughout her body. Chemotherapy resumed, and Fenton said recently that the treatment has eased

her pain. But, she added: “I’m not talking any more about living for years. It’s more down to months.”

That courage was clearly evident as Jacqueline Fenton talked about her disease in the tidy Pickering town-

house she shares with her husband.

She sits in an upholstered rocking chair in her living room, with a heating pad at her back, fighting the nausea caused by the morphine that she must take to ease her pain. Her arms are on the arms of the chair, and she waves her hands and fingers occasionally to add emphasis to her words. Said Fenton, glancing at her husband sitting nearby: “.I feel sorry because I don't want to die young and leave my family. But those are things that are going to happen. If I have to deal with something like that, I want to do it in a positive way. First of all, I don 't want to spoil the rest of the time I have by being angry. And second of all, I have always been a fairly happy and content

person and I am not going to go out of this world leaving them with a different image. ”

On April 9, Fenton had recovered sufficiently to travel to central Florida for a week’s vacation with her husband. In Orlando, he rented a car—and a wheelchair for her—and they toured nearby Disneyworld, went shopping and visited friends living in the area. Said Fenton: “I don’t feel cheated because I have lived a life in which I have done the things I wanted to do, I was given the opportunity. I have done so many things that other people would like to have done but never got the opportunity.” She credits two people with helping her face a future that, she acknowledges wryly, is “not rosy”—her husband and her doctor, Robert Buckman at the Bayview cancer centre. Added Fenton: “To me, Dr. Buckman walks on water. He has to be one of the most wonderful human beings I have ever met.”

Suffering: At 39, the London-born Buckman is one of the centre’s six medical oncologists—doctors who specialize in the treatment of tumors. Buckman, who has thick, dark hair, a beard and hollow z cheeks, is himself familiar a with suffering. In February, I 1978, he contracted dermato1 myositis, a muscle-wasting I disease that almost paralysed I him for two years and, in Dels cember, 1979, nearly killed | him. Now he spends every g working day treating patients § who, more often than not, will £ never get better. His response: he wrote a book, published last month, entitled I Don’t Know What to Say, which suggests ways to help and support those who are dying. Declared Buckman: “If your idea of being a cancer physician is that you want to cure cancer, then you are going to be bitterly disappointed every day.” Added Dr. Alan Bernstein, a specialist in medical genetics at Toronto’s Mount Sinai Hospital: “If where we are now doesn’t work, then we have no more bullets left in the gun.”

But those who have the disease still need help. And for a doctor who accepts that challenge, said Buckman, “there are days when it hangs heavy, when it really hurts. What acts against being demoralized is when it is obvious to me and the patient that, as a result of an intervention of some description, the patient feels better.

When the patient is deeply distressed—or can’t face the knowledge of a recurrence—if I can help them with that, there is an immediate reward. You can see the tension immediately fade away even though the medical situation may remain unaltered.”

According to Buckman, his job has three parts: treating patients, even though current treatments “are deeply unsatisfactory, but they’re all we have”; trying to make patients “feel psychologically supported and attending to their emotional reactions”; and conducting research. This year in Canada, more than $50 million will be poured into that quest by scientists at university and hospital research centres who are seeking new treatments—and the reasons for the body’s cells’ turning malignant (page 46). Among them:

• In Halifax, at Dalhousie University’s medical school, 40-year-old microbiologist Gerald Johnston is one of a 10member cancer research team that is conducting experiments with baker’s yeast—in large part because its cells exhibit a close resemblance to the behavior of human cells. The Dalhousie researchers have succeeded in isolating a mutant yeast cell—which is defective in its ability to proliferate. According to Johnston, the genetic study of normal and mutant yeast cells should shed light on

cancer’s basic mystery: the reason why normally quiescent cells suddenly begin to multiply out of control.

• At Toronto’s Princess Margaret Hospital, Shanghai-born Victor Ling is trying to determine if the body’s resistance to anticancer drugs is created by genetic changes in the tumor cells themselves.

Ling, a geneticist and molecular biologist, said that roughly 50 per cent of the patients who have so-called solid tumors— those which lodge in one area rather than spread through the body—fail to respond to chemotherapy. The reason, according to one widely held theory: tumor cells may be manipulating the body’s natural defences against toxic substances and using them to repel anticancer drugs.

• In Calgary, Dr. René Lafrenière, of Foothills Hospital, has taken that line of research one step further in an attempt to determine why the body’s immune system usually fails to destroy malignant cells. The native of Shawinigan, Que., emphasized that scientists already know that certain white blood cells are hostile to tumor cells. Added the 34-year-old cancer surgeon: “We are trying to find a way to alter those cells to make them better tumor-killer cells.”

• Across Canada, one in every 20,000 babies is born each year with an eye cancer called retinoblastoma. And at Toronto’s Hospital for Sick Children, 43-year-old ophthalmologist Dr. Brenda Gallie is a member of a research team that has identified the genetic deficiency that distinguishes retinoblastoma tumor cells from normal cells. Gallie stressed that retinoblastoma research is not limited to that disease alone because the same aberrant cell mechanism that she is studying is also present in breast and lung cancer. The 18-member team has received a $1.4-million three-year grant from the National Institute of Cancer’s Terry Fox Fund—a source of research funding that commemorates the one-legged, fund-raising marathon runner from Port Coquitlam, B.C., who died in 1981. Predicted

Gallie: “We’ll be able to crack this system wide open, so I would say we are just on the brink of really exciting stuff.”

But that breakthrough still lies in the future. The reality is that the can-

cer death rate for Canadian males has risen by 0.5 per cent every year since 1970—to 170 deaths per 100,000 population. The figures are slightly better for women, and their cancer death rate has remained unchanged at 108 per 100,000. But as Canada’s population grows, the number of newly diagnosed

cases for both sexes has been increasing by about 1.3 per cent yearly during that period—a rising trend that is taxing treatment centres across the country (page 48). Declared Dr. David Klaassen, the director of the British Columbia Cancer Control Agency: “Treatment facilities in Vancouver are awfully tight, and we’re really looking to expand.” Added Dr. Stewart Jackson, the B.C. agency’s head of radiation oncology: “We’re frequently struggling to avoid a backlog. It’s a combination of a shortage of equipment and of staff.”

Slash: His concern is a familiar one. Declared □ Dr. William MacDiar! mid, the chairman of £ the Manitoba Cancer ^Treatment and Research Foundation in Winnipeg: “We do not have enough medical or radiation oncologists. We don’t have enough of the doctors who do medical therapy. We don’t have enough of the doctors who do radiation therapy. We don’t have enough support staff to run the clinics.” And, in Quebec, the financial pinch is particularly severe.

At the Montreal General Hospital, where provincial cutbacks have forced administrators to slash $3 million from the budget since 1986, breast-cancer patients routinely wait several weeks for surgery. At the MaisonneuveRosemont Hospital in eastend Montreal, the money shortage has reduced doctors to practising what they refer to as médecine de guerre—or battlefield medicine—rationing scarce medical resources to those most likely to benefit from them. As a result, more than 1,000 people—including suspected cancer victims—are on the hospital’s waiting list for ultrasound tests that are used to detect the disease.

Remission: A need to share the frustrations experienced in dealing with their disease leads many patients—among them Montreal high-school teacher Marvin Rafuse—to 2 join groups that are designed 2 to improve cancer victims’ ^ morale. Rafuse, who is now 5 46, learned that he had lung Í cancer in November, 1985. His disease is now in remission

after treatment, which included eight weeks of radiation therapy and four months of chemotherapy. Rafuse, who is a member of a Jewish General Hospital support group called Hope and Cope, said that his battle against cancer has been marked by a range of emotions, including a sense of loneliness—and fear. Said Rafuse, who was recently divorced: “We’re all afraid, everybody. We need something to hold onto. We’re like veterans of war. You’re so alone. Alone when you go in for your shots and alone when you go in for chemotherapy.” He recalled that his two young children could not accept the initial diagnosis of his disease. Added Rafuse: “And I couldn’t accept that they couldn’t accept it. So you’re alone.”

Comfort: In Winnipeg, Manitoba’s Reach to Recovery from Breast Cancer support group offers comfort and solidarity, as well as practical information, to women who are suffering from breast cancer. Elaine Enns, the group’s co-ordinator, battled back from a diagnosis of breast cancer 13 years ago. Declared Enns: “We provide an ear so patients can talk out their feelings.”

Sylvia Parks, a homemaker from the Ottawa suburb of Nepean underwent surgery for ovarian cancer in mid1986. She has endured periodic chemotherapy sessions since then, but Parks’s doctors discovered a plumsized tumor on her bowel last January. Declared the 36-year-old mother of three teenaged children: “Sometimes you can’t help but wonder if you’ll see Christmas this year. Thinking about the holidays and the kids’ birthdays can get to you. Christmas is the worst.” And in St. John’s, Nfld., 52year-old psychiatric nurse Ruby Gillies recounted the change in attitude that she has undergone during her lengthy fight against cancer. During the past 17 years, surgeons have removed her colon and performed a hysterectomy in their attempts to halt the spread of the disease. In the beginning, said Gillies, she used to ask a question that other cancer patients commonly ask: “Why me?” Then, she added: “After seeing other women younger than me dying of cancer, I really got to thinking, ‘Why not me?’ Who am I to be exempt from suffering and death?”

But attaining that state has been difficult for many cancer patients, including 43-year-old Toronto nurse Dorothy Duff. In August, 1986, doctors removed a lump from her right breast and put her on a program of chemotherapy and radiation. In February, 1987, she had a recurrence— the breast became swollen and inflamed—and “it was just like somebody had kicked me in the stomach.”

Her physician switched medication and, after nine weeks, when the swelling had gone, surgeons removed the breast and the chemotherapy continued for another nine weeks. Since that time, she has had to fight the fear of cancer striking again. Declared Duff, who is married to Robert Duff, an Ontario energy ministry civ-

il engineer, and is the mother of two teenagers, William, 17, and Brenda, 15: “I don’t know how I would cope if it came back. There isn’t a day goes by that I don’t think about it. There was a time when I would find myself standing ironing and thinking maybe I should be teaching my daughter to do this or that, getting her prepared.”

Still, like many others who are fighting cancer, Duff maintains that there is a link between an optimistic attitude and recovery from the disease. Said Duff: “There are books that say having a positive attitude has a positive effect on this disease, and whether that is true, I don’t know. But I like to think that that is

what has been helping me along.” She added: “There is always someone worse off than you are no matter what you have wrong with you.” Success: David Kassirer, a 51-yearold Toronto management consultant who has survived the loss of his left testicle to the disease—and the spread of cancer to his lungs—holds similar views. Said Kassirer, whose cancer is

currently in remission: “Your attitude going through treatment is paramount to the success of the treatment.”

Still, cancer expert Buckman, for one, gently rejects theories that positive thinking can check cancer. He added: “I really don’t know whether I dare go out to the public and say, ‘Look, there are people who fight like crazy and lose, and that’s not a disgrace, nor does it mean you shouldn’t fight.’ What it does mean is that positive thinking doesn’t cure cancer. I encourage positive thinking because it helps the patients cope with all the symptoms and the rotten time they’re having. But I’m not going to forge a connection between the positive thinking and the progress of the disease.”

Boil: Buckman stressed that there is no evidence to suggest that people who are depressed or who have a pessimistic outlook are more likely to develop cancer than individuals with sunny, optimistic personalities. Declared Buckman: “I really boil when I think about the number of people in socalled alternative medicine clinics who say to people,

‘Well, you’ve got breast cancer. What have you done in your life that has caused your breast cancer?’ They have no reason for suggesting that link with behavior—and all they do is add an immense burden of guilt to the patient.”

In the living room of her Pickering townhouse recently, Jacqueline Fenton settled into a more comfortable position in her rocker before speaking. Said Fenton: “A lot of people who have cancer think, after awhile, ‘Nobody

loves me any more because I have cancer. ’ But it ’s got nothing to do with them not loving you any more. It ’s just that cancer brings out the fear in everyone. People are petrified. ”

For Fenton, there is only one journey that she still wishes to make before she dies: a visit to Edmonton where she and her husband can visit friends —and James and John, the couple ’s 23-year-old twin sons. Said Fenton: “It will be my last chance to see them. I’m very much at peace with myself, although there are moments which I find just a bit more difficult than others. Sometimes when I’m in church, and it’s very solemn, I will think of my children, and the tears will come, and they are very hard to stop. But there is nothing brave about what I’m doing. When you have to do it, you don’t have any choice. I’ve been given a very good life, and I have enjoyed it. I’d like to be lucid for as long as I can and, when I go, I’d like to go fairly quickly. ” Then she stopped talking and smiled reassuringly. Near her side, her husband, Dale, I clenched his hands and looked at the floor. Living with cancer can lead to tranquil acceptance. But pain, suffering— and death—are never far away.

-RAE CORELLI with CATHY WHITE in St. John’s, SUSAN FLORY in Ottawa, DOUG SMITH in Winnipeg and correspondents’ reports