Emotional Aftershocks: When Cancer Comes Back -- David Spiegel, MD. -- 10/30/02
By David Spiegel
It's a moment every breast cancer survivor dreads. Despite aggressive treatment and thorough follow-ups, the fact remains that in some cases the cancer does come back. We discussed coping with the double whammy of relapse when our guest was David Spiegel, MD, author of Living Beyond Limits: New Hope and Help for Facing Life-Threatening Illness.
The opinions expressed herein are the guest's alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Welcome to WebMD University: "Stories of Survivors: Your Breast Cancer Guide." Joining us now is our guest for today, David Spiegel, MD, author of Living Beyond Limits: New Hope and Help for Facing Life-Threatening Illness. He is a professor in the School of Medicine and associate chairman of psychiatry and behavioral sciences, at Stanford University School of Medicine. He is also director of the Psychosocial Research Laboratory. His newest book is called Group Therapy for Cancer Patients.
Welcome, Dr. Spiegel. Please give us an introduction to your work in the area of group therapy for women with advanced breast cancer.
Spiegel: More than 20 years ago we began what was then a rather novel process of putting together in groups of six to ten women with advancing breast cancer. Our hope was that we could help them face their progression of disease and even their deaths in a way that made them stronger. We found that despite the inevitable tears and fears, they did in fact learn from one another's deaths, were less distressed, and even had less pain. The biggest surprise came about 10 years later in the late 1980s when we discovered that those metastatic breast cancer patients randomly assigned to weekly group therapy actually lived longer than the control patients, and we and others have been studying that phenomenon over the past decade.
Moderator: Have you found a perfect balance between support and treatment? How much therapy is needed to increase survival rates?
Spiegel: We don't have definitive answers. The studies suggest two aspects of interventions that in some but not all studies show a survival effect. The first, with recently diagnosed disease, involves getting there early. So, a trial by Kuchler in Germany with gastrointestinal cancer patients showed that an intervention given to them in the first week after surgery resulted in longer survival. At the other end it seems that intervention for those with advanced disease that have a survival effect need to be very long and ours have gone on for many years of weekly group therapy.
Other than that, there's variability in how much of effective therapy could be classified as primarily education and information transfer and how much is the more the traditional psychotherapy involving intense mutual and emotional expression. Some but not all of the studies utilizing this supportive expressive model are associated with longer survival.
Member: There's so much to know just to cope with fear of return.
Spiegel: That's certainly true. The big picture with cancer is that half of all people initially diagnosed with it will live to die of something else -- they will eventually be cured of their cancer. However, the threat of relapse is a reality in the life of any cancer patient. And many patients tell me that the waiting and wondering is almost worse than the bad news. What I advise people to do is to think ahead and plan out a course of action were they to get news of relapse, so that they feel less helpless and more in control of their treatment options.
Member: Can you estimate how many of your patients were diagnosed with a DSM-IV psychiatric disorder following the onset/diagnosis of breast cancer?
Spiegel: There are studies that suggest that slightly under half of all cancer patients have a DSM-IV diagnosis, but the majority of those are relatively minor adjustment disorders. We've found that the proportion of major depression and more serious anxiety disorders is rather low among patients with primary disease like breast cancer, but among patients with metastatic disease the rate of major depression is somewhat is higher. And we've found that about a third of one of our samples of metastatic breast cancer patients met diagnostic criteria for post-traumatic stress disorder (PTSD).
Member: I found working and laughing were helpful in pain management and my sanity. Have there been studies in that area?
Spiegel: There have been studies about what I'll call emotional and cognitive flexibility. For example, in a recent paper in the Journal of Consulting and Clinical Psychology, Jeanine Giese-Davis at our laboratory showed that our [support] groups reduce the tendency to suppress emotion of all kinds, improve patients' sense of self-efficacy in managing their emotions, and reduced distress.
In fact, I've noticed in my groups that just after a moment of intense sadness, there's often a period of comic relief. One woman called a local cemetery to arrange for her remains to be buried, and was quoted an astronomical price; she told them, "Actually, I represent a group of women who are looking for a place to be buried." The cemetery informed her that they did not offer group discounts, and the group all had a good laugh over it.
It is also the case that you have to pay attention to pain for it to hurt, so being engaged in other meaningful activities is an effective way to reduce pain.
Member: Do you feel that it is better for the patient to attend therapy with her spouse, if married? Or are the group sessions more effective when the patient and other cancer patients are involved?
Spiegel: In general, most effective groups are run with patients and not partners although I have run that kind of group as well. What I actually recommend is separate groups for patients and for partners because they each have different, although somewhat overlapping, sets of problems.
Moderator: A WebMD member asked in an earlier chat if food/diet alone could keep cancer from coming back. Many people grasp at the idea of being able to fight cancer drug-free. Can the power of positive thinking through support groups and individual therapy ward off recurrence?
Spiegel: There is no evidence that positive thinking by itself is a talisman against cancer. And in fact, in our studies our patients are taught to hope for the best but prepare for the worst. What we try to cultivate is realistic optimism and I worry that the myth of the power of positive thinking on the one hand constrains people from being honest with themselves and others about all of their understandable emotions related to cancer, and on the other hand can make them feel needlessly guilty if their cancer progresses.
Member: Where does someone begin to search out this kind of support you're talking about, if her doctor doesn't offer direction?
Spiegel: There are several possibilities. Many major medical centers now have support programs, sometimes as part of their oncology or social work programs. There are also very good community organizations that provide group support such as The Wellness Community and Gilda's Club. Information may also be available through the local American Cancer Society Chapter. The National Cancer Institute has a good web site with lots of information and in particular people might search on the Office of Survivorship, directed by Julia Rowland.
Member: What would you recommend women look to avoid when seeking out a support group, other than unrealistic optimism?
Spiegel: I would avoid groups that preach one and only one way of coping with cancer and, in particular, that dismiss members who don't follow the group method or who suffer relapse. I would also avoid groups that promise too much; they should primarily be about living better with the cancer.
Moderator: Do you feel group support needs to be face to face? The increasing use of the Internet as a source of information and support makes me wonder if women in isolated areas could link together online and get the same kinds of results traditional group support offers.
Spiegel: It's a very interesting question and we are studying that right now in collaboration with the Wellness Community and with support from the California Breast Cancer Research Program. Our preliminary results show that these virtual groups can be surprisingly effective.
However, they are very closely managed by trained professionals. I don't want people to get the idea that any random combination of people in a chat room would automatically produce a benefit. But I think there is great potential there.
Member: I think using the Internet is a great support group. I live in a small rural community that does not have a support group.
Spiegel: I would agree with that. I think the power of the Internet includes the fact that it melts distance and I think it can be a wonderful resource for people in remote places, especially. It's just important to keep in mind that the quality of the information available throughout the Internet varies enormously.
Member: When breast cancer is diagnosed and treated early, what percentage of survivors continue to participate in support groups?
Spiegel: I don't know the exact demographics. My guess is that it's a relative minority. Although, I just received an email from a patient in the northwest whom I've never met but is part of our multi-center studies sponsored by NCI (National Cancer Institute). They had originally met for 12 weeks but decided that they didn't want to part with another. She invited me for their 10th anniversary meeting. So many find that the connections they make in these groups become very important parts of their lives.
Moderator: They must have a lot to offer newly diagnosed women. Do they have a role to play in support for women with new diagnosis?
Spiegel: I think so. I think one of the powerful things in support groups and potentially in internet support groups is what is called the Helper-Therapy Principle. Groups work because their members give as well as receive help and they become experts in living with cancer. In fact, our cancer patients are an under-utilized resource for helping newly diagnosed patients live better with the disease. We devote more social resources to training people how to drive automobiles than how to live with cancer.
Moderator: After all, there are more survivors every year. Their collective experience is a powerful tool!
Member: How do you know when you are dealing with emotions too much or too little? I don't want to become absorbed by the thought of a possible recurrence, but I don't want to suppress anything that keeps me living life more fully.
Spiegel: It's a good question. My general experience is that we typically over-repress rather than under-repress, and that if you allow yourself periodically and in a supportive setting to give vent to your feelings they will start to take care of themselves. If, on the other hand, you find yourself sinking into despair more rather than less, it may be time to seek professional help.
Member: Do most of the patients with breast cancer report daily thoughts of their own deaths? Is this a small percentage, or does it depend on the stage that they are in.
Spiegel: It does depend very much on the stage. The times where preoccupation with death are most likely are of course at initial diagnosis, interestingly, at the end of active treatment when patients feel more vulnerable, and then, if there is a recurrence, and near death itself. On the other hand, many patients report, to their own surprise, that after a while whole days go by where they think about neither cancer nor death.
Member: I find that the breast cancer community is so positive and supportive. Participating in message boards, support groups, and even in events like the Race for the Cure are very uplifting experiences. But hand in hand with this seems to be a denial that people die from breast cancer. It's almost taboo to talk about it. What's your opinion on this, and do you think it makes accepting death harder when cancer becomes terminal?
Spiegel: I think that is an exceptionally astute question and I agree that while on the one hand the hope for a cure springs eternal and should be nourished, on the other hand breast cancer is the second leading cancer killer of women and it does tend to isolate those with advancing disease to act as though everyone can and will be cured. For example, as a board member of the Wellness Community I have supported their growing emphasis on helping people who are dying of cancer as well as those living with it.
Member: How do you encourage patients to help their families cope when they as patients are trying to cope?
Spiegel: Actually, that's not as paradoxical is it might seem because part of effective coping is active coping, doing something about a problem. And I think sometimes we treat cancer patients too much like children who need help but no longer are expected to give it. This not only deprives their families of needed support, it makes the patients feel useless. Patients can be a great source of strength and support for their families and I encourage them to do it.
A family patriarch very close to death from lung cancer tried to jump out the window of his bedroom. He sat slumped in a wheelchair surrounded by tearful family members and told me that they would be better off without him. I told him that every one of those people were looking to him for a model of how to die and that I thought he was doing a lousy job of it. He thought for a minute and then started giving orders to his children. He died peacefully several weeks later.
Member: I have two friends diagnosed near [when I was diagnosed whose cancer has] recurred. One died after two months, and the other is on experimental chemo at this point. I've been thinking about death a lot lately. I am not a religious person, and am trying to find some way of dealing with the thought of my own death in a more spiritual way. Can you tell us what approaches some of your cancer patients found most helpful and comforting?
Spiegel: I think one of the way in which our patients have coped with their own deaths is by reexamining their own life values and, oddly enough, looking more to the future than the past. So, as my patients have recognized that they may have very little time left, they think very carefully about how they use that time. So they may devote themselves to relationships with family and friends, complete projects that have special meaning, or try to help others. Some find that meditative traditions are helpful as well in teaching them to live more in the moment.
Member: I feel like I've recurred even though I haven't. I feel guilty that they have recurred and I didn't. They both had children, and I don't. How do you make sense of all of these new and dredged-up emotions?
Spiegel: I would say that the emotions themselves are perfectly understandable, as long as they're a beginning, not an end. So I would, if I were you, just acknowledge those feelings, do what you can to help your friend, and move on. You were luckier and I'm sure she's happy for you that you are. I wouldn't see any harm in discussing those feelings with your friend. What you want is to be as close and supportive as you can be and to let go of the idea that your good fortune came at her expense.
Member: I have trouble asking for help. But being breadwinner and Mr. Mom is wearing me out. I feel terrible guilt when my wife has to make a bed or run an errand. She's so wiped out from chemotherapy. Any advice?
Spiegel: It is stressful for you as well as her. What I would advise you to do is find other ways to get help, either hire someone to help, or ask friends to pitch in, but don't play superman. Recognize that the cancer exacts a real toll on the both of you and model for your wife how important it is for you to admit that you need help and get it.
Moderator: You've written about the use of hypnosis for treatment for medical symptoms and treatment side effects. Can you talk a little bit about that?
Spiegel: Hypnosis is just a form of highly focused attention, like getting so caught up in a good movie or a novel that you become unaware of the context. Most people are at least somewhat hypnotizable and can be taught simple self-hypnosis exercises that can result in significant reductions in pain and anxiety. I teach my patients to imagine that they're floating in a bath or a lake or a hot tub and learn to use those imaginary sensations to filter the hurt out of the pain.
Moderator: Before we wrap up, do you have any final comments for us, Dr. Spiegel?
Spiegel: The idea of patients becoming their own advocates is a good one because they're highly motivated and there's one for every patient in the country. And the group support can really enhance how people advocate for themselves and live well with their cancer.
Moderator: Thanks for joining us, members, and thanks to David Spiegel, MD, author of Living Beyond Limits: New Hope and Help for Facing Life-Threatening Illness.
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