“Getting diagnosed with cancer was a very scary experience. I wondered about what my treatments would be like and whether I could survive both the treatments and the cancer. But here I am, off treatments, no evidence of disease, as they say, and recovering. I am eating healthy foods, exercising and trying to figure out the new normal. But there are times, when that worry bee works its way into my brain and I start to wonder, am I really cancer free? Will this cancer stay away forever?”
~ Anonymous Patient
This quote from a patient represents a most common experience that individuals diagnosed with cancer face as they move from patient in treatment to a person with no detectable evidence of disease when their primary cancer treatments are behind them. There is such a strong hope and wish for life to return to normal, to be worry free and healthy. Many individuals embark on a plan of wellness that includes diet and lifestyle changes, and psychological changes that include reductions in stress, greater appreciation for life, stronger commitments to friends and family and a renewed spiritual growth—the seeds of post-traumatic growth that we discussed in a previous article. However, despite these efforts, there appears to be a pretty uniform struggle that many individuals face after being treated for cancer which is “fear of recurrence.”
As many patients learn in the process of their cancer diagnosis, one of the unique traits of cancer is that it has this devious ability to send microscopic cells through the blood stream and lymph system which can find harbors in other organs. For reasons not always fully understood, these tiny cells sometimes rest and do no damage, while others seem to begin to divide and replicate, sending signals to local blood vessels to send connections for nourishment. As this happens a new tumor, looking just like the first one, pops up in some other location threatening to do more damage. It is this sneaky possibility, and our lack of ability to know in advance whether these cells have travelled and found a comfortable place to reside and grow, or whether the body somehow isolates and removes them making them no longer a threat to the patient, that is so frightening. The problem is that it leaves this unknowable question for patients, “Does cancer still exist and will it come back to bother me?”
As a psychologist, I see the devious nature of this possibility as even more threatening because I consider whether cancer exists not just in the body, but in the mind. In fact, when the worry of cancer exists, cancer is present in the mind. So the treatment of cancer is not just treatment of the disease of the body, but the invasion of the mind. There are techniques that are useful to address “cancer of the mind” and these are the substance of my article. Cancer treatment and survivorship care needs to include education about how cancer can be harbored in the mind and what to do about it.
First we must understand cancer of the mind. When people are first diagnosed, cancer is very much in the mind. Cancer, its implications and worries are in the forefront of everyday existence. Cancer treatments, scans, blood tests, visits to the doctor, and side effects of treatment keep cancer front and center. Patients often struggle to find a moment of peaceful mind where cancer is not fully present in wakeful consciousness. As biological treatments are initiated to eradicate the cancer from the body through surgery, chemotherapy, radiation therapy and other biological and targeted approaches, the individual must look for treatments that help with managing the impact of cancer on the mind. Support groups, talking with friends and families, funny movies and other distracting techniques are often employed as ways to manage cancer of the mind. War terms are often used to describe the cancer experience such as fight, battle and destroy. For many, it is biological and psychological warfare. For others, less aggressive terms feel more comfortable, but no matter the terminology, the experience is one in which cancer resides in the forefront of daily existence. As the disease is brought under control, as treatments complete, there is a glimmer of hope that cancer can recede from the foreground and into the background. Biologically this often happens more quickly than psychologically, but over time it does begin to recede—for some more quickly than for others. However, there are times when cancer comes back into the foreground and these are usually at times of scans, doctor visits, anniversaries of diagnosis, when the media talks about cancer, or someone you know well or even at a distance hears the words, “It is cancer.” When celebrities are diagnosed and speak out, when books and newspaper articles are published, cancer moves back to the forefront of the mind. During these times, the memories of the cancer experience are triggered and they bring the anxiety and worry that cancer may still exist or could come back. It is at these times that cancer exists fully in the mind.
In a study of nurses who were survivors of cancer, one woman wrote so accurately of this experience,
“Someone likened cancer to a pink elephant, and the pink elephant initially is right there in front of your face, you know… and then as you get better, the pink elephant maybe goes to another room. And then as you get much better, the pink elephant goes down the street, but it’s always there and you always know it’s there. And, I think that, as you approach appointments, the pink elephant [from] down the street, you know, comes in the living room again.” –Nurses Experiences as Cancer Survivors: Part 1 Personal, De Marco RF, Picard C & Agreteli, Journal Oncology Nursing Forum, 31 (4) 2004.
The quote underscores the experience of cancer moving from background to foreground and certainly implies a high intensity if not frequency. In studies that I did many years ago with Dr. Patricia Ganz, a medical oncologist here at UCLA and now the director of the UCLA LiveSTRONG™ Center for Excellence in Cancer Survivorship, we found that there was a high frequency for worry about cancer progressing and worry whether treatments worked for survivors of breast, colon, prostate and lung cancer. The ranges were between 46-80% with patients in higher risk categories having higher intensity worries. Some might wonder how this can happen, but it is clear to me that cancer is such a traumatizing experience that it leaves a residue of anxiety, worry and fear. The treatments are often difficult and toxic and humans have the capacity to remember their experiences in great detail. Traumatic experiences leave vulnerabilities and, unfortunately, they are triggers to these memories. Aches and pains, visits to the doctor, internet web sites, conferences and the concerns of friends and family, leave patients vulnerable to activation of anxiety and worry. The answer is not to wipe out the triggers, but rather to develop a relationship to “cancer in the mind” that allows one to make peace with its existence when it races to the forefront and to develop skills to maneuver it gently to the background. My almost three decades of experience working with people who were diagnosed with cancer has convinced me that eliminating worry is not the answer. The goal is to teach people to live with the worry when it arises, to help them understand the normality of this experience and to employ strategies that help them cope with it so that they can optimize their psychological wellness. Cancer can live in the mind long after it leaves the body and many patients can and do have it temporarily move into the foreground through the rest of their lives.
Management Strategies for Worry about Recurrence
Each person must evolve a management plan for themselves that is individualized to address the specific triggers and worries that are most significant for them. I recommend that these plans have some specific components which are outlined below:
Plan for Social Support
A well evolved plan includes emotional support. Know who you can talk to and negotiate their help in advance. Identify two people who are supportive listeners who can hear your concerns and who help you to feel more relaxed when fear of recurrence arises. Make sure that you do not select someone that makes you feel more anxious. Here is a sample plan:
- I will talk to my best friend David because he tends to be calming and reassuring. [Engage David in advance so that he will serve as this resource for you]
- If David not available, I will talk to Shannon, because she listens well.
- I will not call my brother, Mike, because he freaks out and makes me anxious.
Plan for Seeking Medical Information
Since worry of recurrence often comes up when there are new aches and pains, a plan for managing these is essential. Often times these pains are part of normal life, but after a cancer diagnosis, it becomes more difficult to discern what is “normal.” Have a conversation with your doctor in advance regarding how these worries will be handled by you and by your physician to establish a comfortable “window of waiting.” The window is a time frame that feels appropriate to you and your physician regarding when you will go to the doctor to report symptoms, obtain information and seek reassurance. For some patients the window will be very short, a day or two, while for other it may be considerably longer. Engage your physician in this discussion because there could be medical reasons to suggest both a longer and/or shorter window to which you will want to be attuned. However, remember that there is a difference between medical issues and psychological ones. It is important to differentiate these with your physician. Perhaps you can negotiate an agreement that your doctor will help manage your worries by checking out symptoms in a shorter time frame until you get more comfortable knowing that the cancer has not returned. It is also important to determine in advance what other resources you will use to obtain medical information. I have strong concerns about the internet because it is not personalized and can create more anxiety and persistence of cancer in the forefront of the mind. Try turning the computer off or making a rule about the frequency with which you surf the internet on your particular diagnosis. Information is powerful, but it is anxiety activating. Here is a sample plan:
- I have discussed with my doctor how to handle worrisome symptoms.
- If a symptom such as a cough or pain persists for two weeks I will see my doctor.
- I will not go on the internet to do research on this topic.
Plan for Using Self-Talk to Quiet Worries
Talking to yourself is a powerful tool that can both increase anxiety and decrease it. Often times, people are not aware of what they actually say to themselves and do not realize that they are feeding worries, rather than quelling them. The automatic talk often goes something like this, “Oh my goodness, I have this pain in my shoulder, it hurts, it must be metastases to the bone. Oh, my goodness, the cancer is back. I can’t cope with the cancer coming back. I will need chemotherapy and I swore I would never take chemotherapy again.” This is just one version of self talk that has a catastrophic effect and can come in many different forms depending on the individual. Identify your own self talk whether it tends to settle you down or escalate anxiety. Keeping a chart is a good way to become knowledgeable about how you talk to yourself on this topic. Sometimes people have belief systems that are grounded in previous experiences which may or may not be helpful. A psychotherapist, knowledgeable about cancer and who understands this overwhelming experience of fear of recurrence can be especially helpful in this area, but there are things that you can try on your own. Below is an example of some self talk statements that could be written down and included as part of your plan.
- It is unlikely that this is cancer.
- I was screened ____ months ago and things were fine.
- If I have this in two weeks I will go to my doctor.
- I can always go to my doctor sooner if I need reassurance.
- There are 10.5 million cancer survivors, I am one of them.
- I have a lot of inner resources.
- I have people that I can rely on.
- I have a doctor that I can count on to help me with this.
- I can call my friend, who always helps me to feel better.
- I’m going to stop thinking about this, until two weeks have passed.
- I’m going to do something that I enjoy.
- I’m going to write this all down in my journal and leave it
Plan for Distraction
Sometimes one of the most effective tools to manage anxiety is utilization of distraction. Distraction helps people to move their thoughts away from the troubling ones that cannot be resolved immediately and into activities or situations that bring attention to other aspects of life. Every plan for coping with recurrence should also have a list of activities to do that can bring healthy distraction. Such a plan is listed below and begins with an opening statement.
“When I am worried, I will try to distract myself with …
- Use of relaxation
- Television or a movie
- Pleasurable reading
- Social activity with a friend such as a phone call, going to dinner, etc.
- Religious practice and prayer or assistance from my faith community
Development of Multiple and Flexible Coping Strategies
We know from over three decades of research by psychologists on the topic of coping and cancer that no one coping strategy works for all people. However, we do know that people who have multiple coping strategies, and are flexible in how they use them, tend to cope better with the stresses associated with cancer than those who have only one and have difficulty changing gears. Coping strategies govern how emotional information is processed and managed. The goal is to help the person maintain equilibrium in the face of stressful events. Coping strategies are both internal to the person and are contextual and involve the use of others. Without going into a lengthy discussion of coping, it is important to think about what coping strategies you use to maintain or restore equilibrium. Of course, developing a plan to manage worry of recurrence is in itself selecting and developing coping strategies. Some other tools available that may help support these strategies are included in the list below and many are services offered at the Simms/Mann – UCLA Center for Integrative Oncology. Some of these involve more in-depth commitment and attention. They include:
- Individual Counseling with someone who understands the specific concerns that you are facing. The Simms/Mann Center offers this help for our patients receiving their treatment for cancer at UCLA.
- Medication such as anti-anxiety or anti-depressants prescribed by a psychiatrist. We have recently added a psychiatrist to our panel of experts. An appointment can be obtained with her or a referral to another psychiatrist after meeting with one of our clinicians. This service is for our UCLA patients and family members.
- Relaxation/Meditation – There are a variety of techniques available that can be helpful to people with cancer that produce relaxation such as guided imagery, progressive muscle relaxation, meditation on a thought or image, breathing exercises and mindful meditation. There are many resources offered within the Simms/Mann Center and at UCLA. We have a meditation group, a mind/body approaches to coping with cancer and are offering mindful meditation programs specifically for cancer survivors in conjunction with other programs on campus.
- Peer Support can come from individuals or groups. Sometimes being with individuals who have had the cancer experience and are in the same status with regards to treatment can be especially helpful. The Simms/Mann Center offers several groups for individuals who are no longer on treatment.
- Qi Gong is an ancient Chinese form of movement that enhances balance and well-being and helps to restore energy. A weekly group is offered at the Simms/Mann Center.
- Expressive Art – Writing about the experience or using art to heal from the experience can bring about new understandings and reduce stress and anxiety. The Simms/Mann Center has offered writing programs and currently has an art therapy program offered through a group to help individuals heal from the experience of cancer.
- Focus on Wellness – Nutrition and Lifestyle Change. Focusing on wellness can help to shift the mind into a place of acceptance and help relieve some of the anxiety about fear of recurrence. For some cancers there is evidence that changes in diet and lifestyle are important for both preventing recurrence and facilitating longevity. The Simms/Mann Center has an active program of education through individual sessions or specific groups taught by our integrative medicine physician. She can help you develop an individually tailored wellness plan that incorporates the best evidenced-based approaches to restoring and maintaining health. By engaging in these activities, one can create a psychological benefit. It often allows patients to develop cognitive coping strategies that suggest that whatever happens, they have invested fully in their own health. This can be reassuring and help to move the worry of cancer towards the background.
In sum, cancer can exist within the mind regardless of its presence in the body. It is essential for everyone who has had a diagnosis of cancer to develop a plan to manage the inevitable worries that come about as a result of this diagnosis and its sneaky ability to move from the background to the foreground, without being invited.
Anne Coscarelli, Ph.D.
Wallis Annenberg Director’s Initiative in Psychosocial Oncology
© Anne Coscarelli, Ph.D. All rights reserved. 2009.
For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.