"No matter how long we live, cancer patients are survivors, at once wary and relieved . . ." The author of those words is 42-year-old Dr. Fitzhugh Mullan, whose experience as a cancer patient, even a cured one, has told him that medical treatment is not enough, that survivors of many diseases, not just cancer, need help of many kinds.
Mullan recently left Washington to become New Mexico's public health and environmental director. When he was in his late twenties, he wrote "White Coat, Clenched Fist: The Political Education of an American Physician," a book that reported a fledgling doctor's anguished reaction to medical injustices. When he was 32, looking at his own chest X-ray film, he discovered another kind of injustice: a mass deep in his chest that turned out to be cancer.
"Fear and depression ganged up on me quickly . . . raw emotions . . . self-pity," he wrote in another book, "Vital Signs: A Young Doctor's Struggle With Cancer." But he also thought: "How can I beat this? . . . My mind and my hopes riveted immediately on the goal of cure . . . The word itself became magic for me."
His cure was difficult, not because of the can- cer, which responded quickly to radiation and chemotherapy, but because one of his vital blood vessels was inadvertently punctured during a biopsy. He had to have emergency chest surgery to save his life. A year later, as a reaction to his radiation, his breastbone deteriorated and he had to have yet more surgery, including a multi-stage procedure to rebuild his chest.
Still, he was cured of his cancer. Nonetheless, he says -- in an interview and in a recent article in The New England Journal of Medicine -- for many years he felt what he can only call "isolation."
"Not in the sense of being a pariah," he says. "It is that as a cancer patient you will wake at 4 in the morning and worry about a recurrence. You will be taking a shower and feel a little swelling and wonder, 'Is that a cancer symptom? Am I dying or not?' You will have concerns about your sexuality. And how people are going to react to scars.
"There are hundreds of concerns that are not abstract but are very tangible."
Today, he says, he has stopped worrying about his cancer returning. "At first, it's an open wound," he remembers, "then a closed wound, and ultimately it scars over. For me at this point, I feel quite reassured that I don't have cancer." Yet in other ways, he adds, he is still a cancer patient. "I have a permanently compromised lung. I'm at risk in terms of infections and long-term complications. When I play tennis, I pant. When I swim, I rest at the end of a lap. These things are constant reminders to me."
He does not wear short-sleeve shirts because of visible scars on his arms where skin was removed to patch his radiation-burned chest.
"So, yes, beating the disease is important," he says. But you're like Humpty-Dumpty, he adds -- "You can't be put back together the way you were. It isn't just getting over the fear, but coping with the long-term adjustment."
In recent years, he reports, "speaking and meeting cancer patients all over the country, building on my own experience -- one person's window on cancer -- I've had the opportunity to look through many other patients' windows, both as a patient and as a physician." He has learned that his feelings are not unique, that cancer patients typically pass through three "seasons of survival": the period of acute treatment, then a period of "extended survival," with "watchful waiting . . . punishing worry . . . altered body experience," and finally "permanent survival," although "there is no moment of cure but rather an evolution."
And patients with cured or arrested cancers commonly face a whole array of often grim problems.
They are often rebuffed when they try to get a job, or stricken off promotion lists. They sometimes find that friends drop them -- in effect, write them off -- or potential lovers cool when they learn of the cancer history.
They often can't get adequate life and health insurance. In many cases, they suffer physical after effects including sterility, and occasionally even later cancers caused by their life-saving yet toxic treatment.
One reason for all this is a common failure by doctors to think beyond medical cure, Mullan has written.
Most cancer patients today get good medical treatment, he maintains, but then: "The patient is sent home. And not sent home with rare exceptions with anything beyond medical prescriptions or return appointments for medical ser- vices. There is no attention paid, no prescription given for counseling, networking with other patients, issue resolution." Treatment plans "rarely address the psychosocial problems of reentering the active world . . . The result is a void that leaves many cancer patients and their families fending awkwardly for themselves."
"What is needed," he argues, "is a consumer network" -- one far more extensive than any that exists -- "really an alumni association of cancer survivors with meetings, newsletters and periodicals . . . With some exceptions, there is no alumni association, no network for these people to take their concerns to . . . There is no ready source of information for people concerned with these issues of survival, no publication." Part of the network he calls for does exist. The American Cancer Society and its local chapters, he points out, do sponsor many excellent programs and patient groups, with an "I Can Cope" theme.
"But by and large, the average cancer patient does not get referred to or does not receive benefit from these groups," Mullan believes. "People who succeed in connecting with support services tend to do it by word of mouth or referrals from other patients.
"If you take a paper and pencil and figure out how many new cancer diagnoses there are every year, and how many patient support groups -- some of them meeting only occasionally -- I would guess that they are reaching no more than 5 or 10 percent of the potential population.
"Not every cancer patient wants this. But many more would."
The patients are not the only uninformed players, he says. "Primary care physicians, who provide most of the care" for ex-cancer patients or cancer survivors, "are irregularly and unpredictably informed" about support services.
For one, "systematic referrals by oncologists, primary care physicians and nurses" to existing support services "would do a tremendous amount" and stimulate expansion of these "scarce resources."
But beyond this, Mullan says, "we" -- government, society, all of us -- "have done very little in a concerted and well-planned fashion to investigate and address the problems of survival.
"It is as if we have invented sophisticated techniques to save people from drowning, but once they have been pulled from the water, we leave them on the dock to cough and splutter . . .
"A thoughtful, coordinated national research enterprise in the area of cancer survival needs to be undertaken," with "survivorship" -- and all its long-term medical, economic, personal and sexual components -- becoming as much a subject of study as cancer cures.
The same might be said for either survivorship or the continuing burden of many other conditions.