"They warned me things would happen to me like people wouldn't want me to use their toilet seats for fear of catching my cancer," says the 37-year-old woman with Hodgkin's disease, a cancer of the lymphatic system. "But my circle of friends is a little too sophisticated for that.
"Nobody wanted to fire me, or shun me, but what did happen a couple of times was that a male acquaintance would call and say, 'Hey, I haven't seen you for a while, how about getting together?,' and I would say, 'Great, I need a little cheering up, I've got cancer, but I'm coming along . . .'
" 'Sure,' the fellow would say, 'I'll call you.' And then, of course, he never did."
Dr. Stephen P. Hersh, who specializes in understanding and treating the special psychological agonies of cancer patients and their families and friends, has a story to top that one. His patient, a young woman who had concluded a bout with breast cancer (via lumpectomy), had become involved with a young man. The couple was -- as Hersh puts it -- "engaged in heavy petting," with further intimacy anticipated. The woman decided she'd better explain the scar on her breast.
"I've just finished treatment for cancer," she told her would-be lover. "I just remembered an important appointment," the young man said, then jumped up, dressed and was gone. She never heard from him again.
"Alas," says Hersh, "that is all too common."
It is all part of the loneliness experienced by cancer patients. Isolation, often even in the midst of loving families, caring friends. Alienation that gnaws away at the psyche the way one imagines the tumor eating away at the flesh.
"Cancer is the leprosy of our age," says Hersh, who is codirector of the Medical Illness Counseling Center in Chevy Chase and a psychiatric consultant to the National Cancer Institute.
In a chapter for the new edition of "Cancer: Principles and Practice of Oncology," edited by three NCI specialists, Hersh writes, "Cancer represents the abnormal condition of physical self that symbolizes both our tenuous hold on life and the fragile reality of our own control."
The very word cancer generates a fear akin to that generated over history by horrific diseases such as bubonic plague, polio and tuberculosis -- all of which mystified the healers of their ages. With fear, Hersh notes, comes stigma. Some of this derives from our Judeo-Christian heritage, specifically from the story of Job, in which "mysteries resulting in personal suffering tend to be associated with punishment for known or unknown transgressions," he writes. Read that: guilt.
"It is part of the 'why me?' for a lot of patients," he says. "Some find themselves obsessing about 'What did I do to deserve this? Where did I sin? Where did I screw up to create this?' Of course, this is not relevant at all."
The cancer patient's alienation begins with the diagnosis. "Most people tend to listen to the doctor," he says. "Then, when they are asked, 'Do you have any questions?' they barely have any at all, and they walk out feeling a little bit disconnected from reality, the way someone feels when they haven't slept very well the night before. In psychiatric terms we call it a 'mild dissociation.' They will find later that they remember nothing the doctor said beyond the fact that they were told they had cancer."
This "sense of separateness from the world" usually disappears as the individual mobilizies his or her own defenses to the illness. But isolation sets in again during treatment -- whether surgery, chemotherapy or radiation therapy -- "when the patients begin to feel their lives are now being comandeered by other forces, the forces of the medical system, and the treatments and side effects," Hersh says. "Their life rhythms are disrupted and their energies are lower. They are less able to pay attention to or be involved in things either as much or as freely as they were before and they begin to feel, 'Gee, I'm different from other people and nobody knows what I'm living through, even my family.' "
At that point, says Hersh, "the only people who have any legitimacy are other cancer patients who are going through the same thing at the same time."
Virtually every cancer patient, family of cancer patients and sometimes friends can benefit from some form of psychotherapy, Hersh contends.
"We are talking about something that means meeting individually or in a group -- or both -- with a person who is experienced with the medical system or chronic illnesses," he says. "The bottom line is determining how, as much as possible, one can maintain three things: a sense of control, a sense of autonomy and a sense of one's personal integrity.
"Our medical system in the western world," says Hersh, "just doesn't function in terms of sitting down with patients and saying, 'Yes, you have a major illness, but simultaneously with this, how are you going to maintain control, autonomy and integrity?' Instead, everybody focuses on the illness."
Studies show that psychotherapy makes a difference in how well a patient responds to treatment and how well he or she can return to normal function. "Although it is still a research question to document the effects of psychotherapy on the illness," he says, "I am personally convinced that patients have fewer side effects with treatment, are able to return to work or school or anything else more effectively with greater energy and enthusiasm.
"The other research question is do they live longer or is there a greater possibility of cure?" Again, says Hersh: "I am convinced it is one of the important intervening variables. And as such, it is not responsible to ignore it."
Hersh is engaged in research in the emerging field of psychoneuroimmunology which studies how psychological states can influence the immune system. "Just because we don't understand it at this point doesn't mean it doesn't exist, or that it is some kind of magic," he says. "And that is why something that was considered total kookiness or worse, chicanery, even as little as two years ago, is now considered at least a legitimate area of inquiry."
Psychotherapeutic interventions, which Hersh likens in some respects to ancient healing ceremonies, can take varying forms, ranging from informal groups that come together in the waiting rooms of children's cancer treatment centers -- which Hersh calls "stress villages" -- to hypnosis and imaging techniques.
People's own defenses -- perhaps the main one is denial -- can also play a part in fighting the disease. Studies suggest that in some forms of cancer which are related to hormones -- which, in turn, can be affected by states of mind -- feistiness, rage and denial can be appropriate, healthy emotions. Hersh says he is still surpised when people check into the National Cancer Institute for treatment, sign authorizations and informed consents about their condition and yet -- even after they are there for several weeks -- when asked what they have will say something like, 'Oh, I have this tumor,' or 'I seem to have a blood disorder.' Never 'cancer.'
"I don't see a problem with that," says Hersh, "as long as the individual is not denying in any way that is interfering with the quality of life or the things they need to do, like making certain the children are cared for," and otherwise getting their lives in order.
Different patients may respond best to different forms of psychotherapy. "There are many paths to the same place," Hersh says, "and there is a need to select the most appropriate for each patient." Some may need only brief consultations for specific problems -- how to tell the children, for example. Others may do well in one of the support groups provided through local hospitals or the American Cancer Society. Some of the burgeoning cancer counseling services can provide the needed help.
Initially, Hersh says, the patient should consult with a psychiatrist specializing in the subject, to assess need and the most helpful approach.
*Imagery -- for example, visualizing the treatment working as armies of chemotherapy units overwhelming fields of cancer cells -- can be a useful technique, but it does not work for everyone. "A lot of people are jumping on the bandwagon who are trying to impose their own images on the patients. Whatever benefits we can document coming from what imagery does, it must be the person's own images."
*Biofeedback, in the hands of a trained professional, may be helpful.
*Prayer and the help of clergy may provide benefits, depending on the patient's belief system.
All of these techniques should accompany, not replace, medical treatment. And, says Hersh, the patient should be wary of "any health professional who is making them feel uncomfortable about asking questions or stupid or wrong or guilty. Whatever the therapy might be, it won't be optimal."