The cancer journey is an uncharted, unwelcome, and unanticipated course. As such it potentially has a powerful emotional impact on survivors and loved ones-from those very first words, “You have cancer,” through all the stages of living with the diagnosis.
Part of that emotional impact, for some, can be what is clinically referred to as “cancer-associated emotional distress.” This very real and difficult condition does exist, and it has only recently begun to receive the attention it deserves in the healthcare community. Common feelings and emotions associated with the condition include anxiety, fear, depression, low self-esteem, anger, shame, and guilt, which often result in disturbances that affect one’s memory, ability to concentrate, overall sense of well-being, and coping mechanisms with regard to decision-making, therapy tolerance, sleep and eating habits, partnership intimacy, and work and school performance. , ,
Though the emotional impact of a cancer diagnosis is by no means a new phenomenon, the training of oncologists has historically focused solely on the physical aspects of the disease process. Because cancer patients tend to rely on their treating oncologists for overall management, the nonphysical aspects, including emotional distress and psychosocial issues and conflicts, are frequently ignored. , , , , And, significantly, this neglect may ultimately have a negative influence on treatment compliance, , overall outcome, and quality of life. ,
It goes without saying that there are many excellent, empathetic oncologists who do not ignore their patients’ emotional response to a cancer diagnosis and many who recognize the important fact that empathy and good communication skills are important in dealing with cancer patients. The fact is, however, that empathy does not automatically translate into an ability to recognize and deal effectively with psychological distress. Without the requisite tools and knowledge, even the most empathetic oncologists may remain unprepared to manage the emotionally afflicted cancer patient.
Psycho-oncology has emerged over the past two decades as a subspecialty of oncology in response to a growing recognition of the need to deal with the nonphysical, psychological aspects of cancer throughout a survivor’s journey. , Clinically, psycho-oncology addresses and scientifically studies two psychological dimensions of cancer: first, the psychological reaction of patients and the stresses on their loved ones, caretakers, and clinical treatment staff throughout the cancer journey-from the time of initial diagnosis or recurrence, throughout treatment, and during survivorship or end-of-life care (the psychosocial dimension); and, second, the psychological, behavioral/lifestyle, and social factors that influence cancer cause and risk, detection, and survival (the psychobiologic dimension).
Psycho-oncologists are multidisciplinary in background and training and include, but are not limited to, psychiatrists, psychologists, social workers, nurses, and clergy. As psycho-oncology becomes integrated into more treatment settings, oncologists are becoming increasingly aware of the need to call on their psycho-oncology colleagues and are better able to identify emotional distress and when and to whom to refer their patients for treatment beyond their own expertise.
As the healthcare community becomes more aware of the role of psycho-oncology, it is important that survivors and caregivers realize the benefits that this specialty can provide. Survivors may be surprised to read some of the following questions and hear pieces of their own stories.
Q. After a lot of testing to determine the extent of spread of my cancer, my team of doctors recommended that I receive chemotherapy and radiation. I’ve come to terms with that recommendation-and I begin my treatment next week-but I’m scared and worried about so many things: my prognosis, the side effects, how my family will cope with all this, and how it will affect my ability to go back to work and to function in other areas of my life after treatment is over. I thought maybe one of my doctors or nurses, during one of my many consultation visits, would have recognized how scared I was or asked me how I was coping, but nobody has.
I feel uncomfortable bringing up these emotional issues myself because everyone always seems so busy and focused on the details of the treatment. I still want to get help to deal with all these issues, but I don’t know where to turn. I’ve searched the Internet and read a lot of brochures I’ve picked up at the treatment center, but nothing seems to really address my worries. Are there professionals who offer individualized support and guidance? Who are they, and how do I find them?
A. Many cancer centers and oncology divisions now have psycho-oncology units. The professional discipline present within any given unit varies, but most include representation from psychology, nursing, social work, and the chaplaincy. If your treatment center does not have such a unit, you can find local professional help by contacting the American Psychosocial Oncology Society directly (www.apos-society.org;  276-7443). You can also ask your oncologist or primary care physician to refer you to a behavioral health specialist (a psychiatrist, psychologist, or social worker) in your community who has the expertise to do an initial assessment and make the appropriate referral, if necessary, to a professional more specialized in dealing with cancer patients.
Q. I have just been diagnosed with cancer, and I’m having trouble focusing on what to do next. I feel like I’m going crazy, and I don’t know where to turn for help or guidance. I am rapidly falling apart at the seams-I can’t sleep, I’m not hungry, and I’m crying all day. I feel like I’m caught up in the middle of a dark tornado with no safe way out. I’ve always had a supportive family and group of close friends, but I feel very alone right now and nothing anyone says or does seems to change that feeling of doom. Am I going crazy? Is this a normal response to receiving a cancer diagnosis?
A. What you are feeling are normal psychological reactions to receiving a diagnosis of cancer. Experiencing unpleasant emotions such as sadness and anxiety when faced with cancer is usual and expected. These are all normal and typical responses to a major crisis. Feeling this way does not mean you are mentally ill or lacking emotional stamina.
The initial response is one of disbelief, denial, or despair, and this usually progresses to the second phase of responses, which can include anxiety, a depressed mood, anorexia, insomnia, poor concentration, and a basic inability to function. This second phase usually lasts for one to two weeks and is followed by an adaptation phase. In this phase one begins to accept the validity of the information given-the diagnosis-and starts focusing on the treatment options and the treatment process.14
How one adapts to the illness over time, however, varies from patient to patient and moment to moment. It depends on several variables, which include one’s individual personality and coping mechanisms to deal with daily stresses and emotional upheavals, prior life experience, available support systems, and the magnitude of the experienced stressors, including financial distress. Some individuals may travel through the cancer journey without suffering unbearable psychological distress. Sometimes, however, the feelings and the emotions become so overwhelming, difficult, and painful that they interfere with one’s ability to cope with the illness and its treatment and carry on with life. It is important to understand the range of normal reactions as well as when the feelings and emotions become so overwhelming and painful that professional help is needed.
Q. I am a single, 38-year-old woman diagnosed with ovarian cancer. As part of my treatment, I had to have my uterus removed along with both ovaries. I have now completed my chemotherapy, and my doctors say that I am free of disease. I should be happy, but being left childless, without my reproductive organs and with the fear of a recurrence, is so difficult. I am depressed, am very much alone, and feel sexless. I have stopped dating and feel I’m not woman enough now for any man. Furthermore, I am having trouble sleeping at night because of horrible hot flashes. My gynecologist agrees with my oncologist that hormone replacement therapy would not be a good idea for me due to a potential risk of breast cancer. Is there any help for me out there? I am emotionally miserable and exhausted.
A. Certain antidepressants can help with depression and at the same time alleviate the hot flashes. I recommend that you get a referral to a psychiatrist who can evaluate you and recommend a safe medication that will be prescribed having taken into account your medical and medication allergy history. A medication that has proven very effective in this situation is Zoloft® (sertraline), which comes from the group of antidepressants known as the selective serotonin reuptake inhibitors (SSRIs). My experience is that when started at 25 mg (milligrams) per day and increased to 100 mg per day over six weeks, the mood improves and the hot flashes decrease in intensity and frequency. I would suggest that you supplement the effectiveness of the medication with psychotherapy (interpersonal therapy) to deal with the grief of the loss of your child-bearing organs and your early entry into menopause.
Q. I was diagnosed with ductal carcinoma in situ (DCIS) three years ago and received radiotherapy after my lumpectomy. I thought I was doing well. I went back to work, and I was getting back into the social scene. Recently, I found out a close friend of mine with breast cancer was told she had a recurrence in one of her pelvic bones. Looking for some kind of solace and emotional support, I went to a breast cancer survivors’ group at one of our local hospitals. I was shocked to learn that the group did not view me as a true survivor. They even questioned why I had participated in one of the survivor walks the month before. Their reaction hit me like a ton of bricks and left me feeling very much alone in my struggle to come to terms with my diagnosis.
I continue to be confused about what DCIS is, and I can’t seem to find answers that clarify the issue. I was devastated by the diagnosis, I was frightened while going through the radiation treatments, and I still live with the fear of a recurrence that I can’t shake. So where do I go for help if I don’t even have a breast support group to turn to? Where do I belong? Am I a cancer survivor? I am feeling more and more alone and depressed, and I think I might need some professional help.
A. What you are experiencing is not at all uncommon for patients with DCIS. Recent literature supports the finding of a feeling of isolation as well as anxiety and fear among patients with your diagnosis.16 DCIS is a relatively new diagnosis since mammography has become a routine part of medical care. Because of its more indolent nature and lack of invasiveness, the prognosis for many patients is excellent, with the long-term survival rate of nearly 100 percent. It can recur, but when and if it does, it is not generally life-threatening.
Because the prognosis is so favorable, it may be difficult for those with invasive disease to relate to your situation, their rejection of you signifying their own anger and envy at your good fortune and the unfairness of it all. For this reason support groups for DCIS have sprung up, as they have for metastatic patients, because support is always better when people can relate to one another. If you’d like to be part of one of these groups, contact your hospital or clinic; most hospitals have a breast center or social work department. There are also many organizations with information about DCIS risk, detection, treatment, counseling, and support services:
Q. I have lung cancer and am in the middle of my radiation treatments. I am tired most of the day, am feeling the pain of a bad skin reaction, and am suffering from nicotine withdrawal. I have tried to talk about this with my doctors, but I get the feeling that they are annoyed with me. My normally kind, even-tempered husband is now always angry with me, and he says that he feels that I betrayed him by continuing to smoke and then getting this cancer.
I feel overwhelmed by my physical pain and, on top of that, all this emotional distress and guilt brought on by everyone’s assumption that I brought this on myself. It seems, in their eyes, I have no right to expect alleviation or mercy. Part of me also feels that maybe I deserve to have gotten this cancer and should suffer the consequences. I need someone to talk to who really understands and is prepared to listen and help me professionally. Does this type of help exist for cigarette smokers like me with lung cancer?
A. Recent studies have shown that patients with lung cancer often feel stigmatized by their medical care providers as well as by society at large because of the association between cigarette smoking and lung cancer.17 Whether or not the stigma is real is not the main concern here. The fact that you feel it exists and are so affected by these feelings is important. You have cancer-whether or not you contributed to its development. You have the right to get appropriate therapy for the cancer as well as for your emotional distress.
You cannot control the attitudes of others, but you can control your reactions to how other people act or what they say. You can also control your own actions. You do not need to suffer in pain alone. I believe that you would benefit the most from a support group of other lung cancer patients. It is important for you to see that you are not alone in your experience and to gain a sense of inner strength from that support to allow you to move forward with an improved sense of well-being. An excellent resource is the Lung Cancer Alliance, which offers support groups and a phone buddy program with peer-to-peer support. The information hotline (available Monday through Friday from 9 a.m. to 5 p.m. eastern time) is (800) 298-2436; the Web site is www.lungcanceralliance.org.
Q. I am 28 years old and was married six months ago. A few months after the wedding, I developed a lump in my neck that turned out to be a non-Hodgkin’s lymphoma. I am receiving my chemotherapy now and will later get some local radiotherapy to my neck. My husband and I were planning to have children right away, but now those dreams have to be put on hold while I get chemotherapy.
After I was tested to make sure I was not pregnant, my gynecologist put me on birth control pills. My oncologist has informed us that my prognosis is excellent and that with the type of chemotherapy I am getting I should be able to conceive later with minimal chance of any risk to my baby. Just to be safe, however, we saw a fertility specialist and had some of my eggs frozen.
Initially, I thought I had been dealing with the whole cancer thing quite well, but I started feeling pretty depressed after the diagnosis. I didn’t want to admit this to my husband because he’s feeling stressed about our finances now that I’m on short-term disability. I knew I needed some help but was not sure if I really needed to see a psychiatrist and add more bills to the pile. Then a friend who had also recently gone through depression told me about St. John’s wort and described how it helped her.
I decided to give the St. John’s wort a try, and I did start feeling better. The problem is that I just found out I am five weeks pregnant! I had been nauseated for a while, but everyone thought it might have been due to my chemotherapy. Now the fact is that this baby growing in me has been exposed to the chemo chemicals that they say could be harmful, and I’m being told I should terminate the pregnancy. How could this have happened? I haven’t missed a day on my birth control pills. My husband has not talked with me since we found out.18
A. This is a classic case of an adverse interaction between two drugs. The St. John’s wort sped up the metabolism of the birth control pill in your body, leaving you with an ineffective dose for pregnancy prevention. This emphasizes the importance of telling treating doctors about anything you are taking, even over-the-counter supplements, to check for safety and contraindications. Here the St. John’s wort worked against the effects of the birth control pill, making pregnancy more likely. I suggest that you seek some short-term psychodynamic therapy at this point to help you deal with the impending personal loss associated with terminating a pregnancy. The type of therapy I would recommend is called interpersonal psychotherapy. As well, I believe that you and your husband might benefit from some couples’ therapy to work out the loss and the issues of grief and trust.
Q. My breast cancer recurred in the irradiated involved breast. I had a mastectomy, and my workup studies revealed that the disease had not spread past the breast. My doctors once again gave me an excellent prognosis for cure. I was placed on hormone therapy, am feeling physically well now, and am back at work. My problem is that I cannot shake the fear of the disease coming back again. It happened to me once, even though the odds were very small, so I can’t feel secure in its not happening again. Each time I feel any slight ache or pain, the fear becomes overwhelming. Is there any type of help for me to deal with this never-ending fear and anxiety?
A. Yes, there is. What you are experiencing is a natural response to the distrust that this disease engenders in all who have been affected by it. Living with anxiety-and fear of recurrence even in this scenario, where the likelihood of another recurrence may be low-is unacceptable. There are many medications available to alleviate the intensity of the fear and the anxiety. Besides medication stabilization, I would recommend a course of psychotherapy. Cognitive behavioral therapy (CBT) may help you reconstruct your instinctive negative thoughts and responses to more-positive conclusions with more functionally adaptive responses.19 You are entitled to have an ache or pain as a human being without always fearing that it is something much worse. Also, spiritual counseling has been shown to be quite effective in coping with the fear of living with cancer’s potential recurrence.20,21
The management of psychological symptoms associated with the cancer journey is complex. Several treatments currently exist to deal with emotional distress, including-but not limited to-psychotherapy and drug therapy. Each case requires individualized attention and therapy designed to address the issues at hand. For patient safety the administration of psychiatric medications requires knowledge of risks, contraindications, side effects, and potentially harmful drug interactions with chemotherapy, hormonal therapy, and other prescription or over-the-counter medications. Without the right tools to adequately identify emotional distress that might require professional attention, and if lacking familiarity with and in-depth knowledge of the different available therapies to deal with psychological issues, even the most empathetic and communicative physicians may remain unprepared to effectively manage the emotionally afflicted cancer patient.
Dealing with the nonphysical side of cancer-the “human side of cancer”22-is becoming a vital component of cancer care. It is clear that untreated psychosocial and emotional conflicts impair quality of life and may have a negative impact on treatment compliance and overall survival outcome.9,23,24 It is important that cancer patients, their loved ones, and caretakers know the following:
- Emotional distress is a normal response to receiving a diagnosis of cancer and is not shameful or a sign of psychological weakness.
- The level of emotional distress may vary during the cancer journey and at times may be significant enough to warrant professional intervention to help cope and function more effectively.
- There are trained and dedicated professionals available to treat the emotional and psychosocial aspects of cancer.
- Open communication with the cancer treatment team about feelings, emotions, and social conflicts may facilitate getting the appropriate care and resolution.
. Massie MJ. Prevalence of depression in patients with cancer. Journal of the National Cancer Institute. Monographs. 2004:(32) 57-71.
. Portnoy RK, Thaler HT, Kornblith AB, et al. Symptom prevalence, characteristics and distress in a cancer population. Quality of Life Research. 1994:3(3):183-89.
. Roth A, Nelson CJ, Rosenfeld B, et al. Assessing anxiety in men with prostate cancer: Further data on the reliability and validity of the Memorial Anxiety Scale for Prostate Cancer (MAX-PC). Psychosomatics. 2006:47(4):340-47.
. Söllner W, DeVries A, Steixner E, et al. How successful are oncologists in identifying patient distress, perceived social support, and need for psychosocial counselling? British Journal of Cancer. 2001:84(2):179-85.
. Fallowfield L, Ratcliffe D, Jenkins V, Saul J. Psychiatric morbidity and its recognition by doctors in patients with cancer. British Journal of Cancer. 2001:84(8):1011-15.
. Maguire P. Improving the detection of psychiatric problems in cancer patients. Social Science and Medicine. 1985:20(8):819-23.
. Newell S, Sanson-Fisher RW, Girgis A, Bonaventura A. How well do medical oncologists’ perceptions reflect their patients’ reported physical and psychosocial problems? Data from a survey of five oncologists. Cancer. 1998:83(8):1640-51.
. Passik SD, Dugan W, McDonald MV, Rosenfeld B, Theobald DE, Edgerton S. Oncologists’ recognition of depression in their patients with cancer. Journal of Clinical Oncology. 1998:16(4):1594-600.
. DiMatteo MR, Lepper HS, Croghan TW. Depression is a risk factor for noncompliance with medical treatment: Meta-analysis of the effects of anxiety and depression on patient adherence. Archives of Internal Medicine. 2000:160(14):2101-7.
. Stein M, Miller AH, Trestman RL. Depression, the immune system, and health and illness. Findings in search of meanings. Archives of General Psychiatry. 1991:48(2):171-77.
. Spiegel D, Bloom JR, Kraemer HC, Gottheil E. Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet. 1989:2(8668):888-91.
. Butow P, Cockburn J, Girgis A, et al. Increasing oncologists’ skills in eliciting and responding to emotional cues: Evaluation of a communication skills training program. Psycho-oncology. 2008:17(3):209-18.
. Neumann M, Wirtz M, Bollschweiler E, et al. Determinants and patient-reported long-term outcomes of physician empathy in oncology: A structural equation modelling approach. Patient Education and Counseling. 2007:69(1-3):63-75.
. Holland JC. Principles of Psycho-oncology. In: Holland JF, Bast AC, Morton DL, et al, eds. Cancer Medicine, 4th ed. Baltimore: Williams & Wilkins; 1997:1327-43.
. Levin T, Kissane DW. Psycho-oncology: The state of its development in 2006. European Journal of Psychiatry. 2006:20(3):1-17.