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Psychological well being and quality of life in ovarian cancer survivors
Article first published online: 16 JUL 2003
Copyright © 2003 American Cancer Society
Volume 98, Issue 5, pages 1061–1071, 1 September 2003
How to Cite
Ferrell, B., Smith, S. L., Cullinane, C. A. and Melancon, C. (2003), Psychological well being and quality of life in ovarian cancer survivors. Cancer, 98: 1061–1071. doi: 10.1002/cncr.11291
- Issue published online: 20 AUG 2003
- Article first published online: 16 JUL 2003
- Manuscript Accepted: 11 DEC 2002
- Manuscript Revised: 10 DEC 2002
- Manuscript Received: 8 OCT 2002
- disease trajectory;
- ovarian cancer;
- psychological well being;
- quality of life
This report offers a unique analysis of the psychological distress associated with ovarian cancer in a review of natural correspondence between ovarian cancer survivors and an ovarian cancer newsletter.
A review of 21,806 letters, cards, and e-mails reflecting correspondence from January 1994 to December 2000 between ovarian cancer survivors and the founding editor of Conversations!: The International Newsletter for those Fighting Ovarian Cancer was performed using ethnographic qualitative research methods. Statements related to the impact of disease were bracketed and coded within physical, psychological, social, and spiritual domains according to the City of Hope Quality of Life Ovarian Cancer instrument. Statements that reflected psychological well being were then evaluated with respect to the disease trajectory (i.e., diagnosis, treatment, remission, recurrence, and advanced disease/end of life).
A total of 1282 communications were identified that pertained to psychological well being. Findings based on major themes derived from the analysis included descriptions of stressors associated with disease status. Significant stressors were identified within all phases of diagnosis, treatment, remission, and recurrence. Women described both positive and negative effects of disease and frequently demonstrated resourcefulness and perseverance by sharing coping mechanisms and survival strategies.
The natural correspondence from women with ovarian cancer provided a rare opportunity to capture the psychological concerns of women throughout all stages of the cancer trajectory. Health care professionals' awareness of the common psychological stressors throughout the ovarian cancer trajectory may allow them to identify more readily the needs for support, leading to improvement in overall quality of life. Cancer 2003;98:1061–71. © 2003 American Cancer Society.
In 2002, there will be an estimated 23,300 new diagnoses of ovarian cancer and nearly 13,900 women will die of this disease.1 Because ovarian carcinoma causes more deaths than any other female gynecologic malignancy, and because most patients are diagnosed with advanced disease portending a poor prognosis, it is not surprising that ovarian cancer carries with it a unique psychological impact.2–4 Malignant ovarian neoplasms present a challenge to the medical team, not only in terms of treatment but also in providing strong psychological support throughout the trajectory of the disease. Focused on attempts of cure, clinicians may neglect the psychosocial needs of patients undergoing treatment, and patients may be reluctant to discuss these feelings with health care providers.
The current literature suggests a wide range of estimates for the prevalence of psychological distress in patients with malignant disease.5–10 Although most of the literature has focused on patients with breast cancer and hematologic malignancies, a growing body of research is contributing to the understanding of the unique psychological impact of ovarian cancer4, 11 Because psychological well being has been described as the most important contributor to overall quality of life (QOL) in cancer survivors, it is important that clinicians recognize and respond to the factors that may influence QOL.4, 5, 12, 13
Psychological factors may contribute to the decision-making processes, and women who actively seek coping information may be offering an important clue about their level of emotional distress.14, 15 Lugendorf reported that women with ovarian cancer who demonstrated active coping skills using positive reframing and acceptance techniques reported better functional, emotional, and physical well being as well as an overall higher QOL.16 Thus, active coping skills may endow women with a heightened sense of control over their cancer experiences, lowering overall distress. Women with ovarian cancer have expressed a stronger need for information regarding and participation in their health care than patients with either breast cancer or prostate cancer, perhaps demonstrating their need to control and cope with a diagnosis of a disease that has such a poor prognosis.16
For cancer survivors, the results of psychosocial studies indicate that disease free patients with early-stage disease enjoy QOL with physical and emotional well being comparable to survivors of the same age in noncancer cohorts.5, 17, 18 However, there are significant numbers of patients who, acutely aware of the high probability of recurrent disease after surgery and adjuvant chemotherapy, have fears of future diagnostic tests and a general fear of recurrence.13, 19 The sense of uncertainty has been cited as a major QOL concern in cancer survivors.
Psychosocial interventions aimed at helping patients adjust to their diagnoses have demonstrated effectiveness.20, 21 Lakusta et al. used a computer-administered form of a QOL questionnaire during the treatment period for 60 women who were undergoing chemotherapeutic treatment for ovarian cancer.22 This small intervention provided the health care team with immediate information regarding the concerns and problems of individual patients, allowing them to address the psychosocial needs on an immediate and individual basis.
Literature to date has suggested that social support, comorbid conditions, economic resources, relations with the health care team, and concurrent major stressful life events play a significant role in how well patients adapt to their disease state. There is a need for additional research to identify and respond to QOL concerns as the population of cancer survivors expands and as awareness of QOL concerns increases.
For this report, a unique resource was used to examine and analyze the psychological impact of ovarian cancer. The inception of CONVERSATIONS!: The Newsletter for Those Fighting Ovarian Cancer (CONVERSATIONS!) began shortly after its editor, Cindy Melancon, was diagnosed with ovarian cancer in 1993. Unable to find information and support regarding her disease and feeling a strong need to connect with other women who shared her own diagnosis, Ms. Melacon initiated the newsletter as a means of information, support, and camaraderie for women and families fighting ovarian cancer.
The first issue of CONVERSATIONS! was mailed in October 1993. Nine years and 118 issues later, the newsletter is distributed to 3600 people in all 50 states and 31 countries.23 Ms. Melancon, as the editor, encourages communication from readers on topics for upcoming issues, and thus, received a significant volume of correspondence between 1993 and 2000. Ms. Melancon previously collaborated with the City of Hope (COH) investigators in 1994 on a study of QOL in ovarian cancer survivors. A survey was done of the CONVERSATIONS! readership that subsequently was published in the Western Journal of Nursing Research.4
In 2001, Ms. Melancon again contacted Dr. Betty Ferrell at the COH National Medical Center to suggest analyzing correspondence from the newsletter to more broadly share the experiences of the CONVERSATIONS! readership with others. The archived correspondence was sent to the COH investigators and included a total of 21,806 letters, cards, and e-mails, reflecting 8 years of conversations between the editor and her readers. Although a small portion of the letters represented ongoing correspondence by some women, the vast majority were written by separate individuals. Ms. Melancon attempts to respond to each piece of correspondence. This article provides a unique insight into the psychological needs of thousands of ovarian cancer survivors, as told through personal reflections and correspondence, and offers suggestions for improved care and further research.
MATERIALS AND METHODS
The data reported in this article were derived from 21,806 pieces of correspondence sent to CONVERSATIONS! from women with ovarian cancer. The collection consisted of all correspondence sent by patients with ovarian cancer between January, 1994 and December, 2000. The letters were sent in a variety of formats, primarily on personal stationery, greeting cards, and e-mail. This study was approved by the COH Institutional Review Board. All identifying information was deleted for anonymity and to protect confidentiality.
The investigators individually reviewed the responses and began the process of content analysis. Content analysis was performed on the written correspondence using four linked processes: processing the raw data, data reduction, data display, and conclusion drawing/verification.24, 25 The data were analyzed using an established framework of QOL encompassing physical, psychological, social, and spiritual well being, which evolved from over a decade of research on cancer survivors (Fig. 1).4, 5–7, 12, 13
1) All original data were numbered to provide identification; data were then duplicated, and the copies were organized for further analysis to protect the integrity of the original documents. 2) Two research assistants trained in qualitative methods of research analysis read and examined all data to identify units of analysis, which were defined as a paragraphs, sentences, verb phrases, or single words that conveyed a single meaning, idea, or concept.24, 25 3) Units that corresponded to a theme in the COH-QOL tool were bracketed and displayed in a table organized according to the QOL themes encompassed by physical, psychological, social, or spiritual domains. 4) Units that did not correspond to a QOL theme but that were deemed significant, based on repetition and emphasis throughout the data, also were bracketed and displayed within a table. 5) Data within the psychological domain were compared using thematic analysis. Data within the psychological table were regrouped according to stages of disease trajectory (i.e., diagnosis, treatment, remission, recurrence, and advanced disease/end of life). Data for which a specific trajectory stage could not be identified were coded into themes under the domain survival skills/coping mechanisms. 6) All of the themes described above were identified and validated through discussion, review, verification, and consensus by the principal investigator, a masters-prepared nurse with extensive experience in qualitative research, and a surgical oncologist. 7) After themes were identified, findings were reviewed by seven external nursing consultants with extensive backgrounds in ovarian cancer and a surgical oncologist. The process of data analysis occurred through weekly meetings of the research team over 1 year.
The large sample of letters captured the psychological impact of ovarian cancer on patients throughout all phases of the disease trajectory. Narratives were rich with experiences in surviving an ovarian cancer diagnosis, enduring treatment, and coping with long-term survivorship. Representative excerpts from the correspondence are included in the tables. Although the analysis was primarily qualitative in nature, the investigators also attempted to quantify the number of responses across categories to determine the frequency with which various psychological concerns were discussed. Table 1 summarizes the frequency of the comments across the themes.
|Comment||No. of respondents|
|Celebration of survival||110|
|Distress/anxiety of survival||197|
|Advanced disease/end of life||61|
|Survival skills/coping mechanisms|
|Sense of control||143|
|Anxiety and depression||82|
|Appreciation of life||61|
|Focus on living||54|
|Supporting other survivors||43|
|Accessing all possible treatments||20|
Correspondence referring to the initial diagnosis period (Table 2) expressed distress, fear, and uncertainty associated with the diagnosis of a life-threatening disease. In an instantaneous transformation from healthy woman to cancer patient, many women equated their diagnoses with an inevitable death sentence. Diagnosis was described as a crashing point, altering all priorities and future plans.
|My first reaction to the news was that I was going to die bald. Is that vain or what? I didn't say that to my doctor, but I remember that flashing across my mind. Well, if the Lord does take me now—I'll go out the way I came in. Sometimes, I feel like a Pac-Man character and I'm running from an open mouth that is on my heels.|
|I remember trying to come to grips with the fact that I had Stage III ovarian cancer. It had metastasized to my intestines and stomach. The doctors gave me a less than 30% chance of surviving. I would look at my 2-year-old baby daughter and weep, aware that I probably wouldn't be around to help her grow up. Someone else would see her through the milestones of her little life. Her first big step (kindergarten) was still 3 years away. I was convinced that I wouldn't be there to watch her climb on the school bus on her first day. My mother died of the disease when I was 13, and all I wanted was to be able to raise my child.|
|When I was first diagnosed, I thought it was a death sentence and that I would die within a year.|
|I was hysterical for several hours. As I understood, ovarian cancer is the most deadly cancer that can strike a woman. I screamed and cried. I knew only about Gilda Radner. I thought no one survived.|
|When I was diagnosed with ovarian cancer, as with most people, my world caved in.|
|My first reaction when I learned that I had ovarian cancer was, “I am going to die.” I prepared all of the things that I needed to do to tie up loose ends. My only exposure to ovarian cancer was two friends who both died within 11 months of their diagnosis. Because of that experience, I had a hard time believing that any one could get well or even live a normal life with ovarian cancer.|
|Panic…and self questioning set in immediately … Was I going to die? Why me? This doesn't happen in my family … we don't have cancer. But I did have it. I wondered how I was going to live with the anxiety and uncertainty … I was only 54 years old … the youngest of my five children had just graduated from college, and this was to be the time when my husband and I were going to have time for each other. All during that night, I prayed that God would show me how to walk through this valley, and I now realize answers began to come immediately.|
|How does one begin to describe the one moment in your life when you hear “you've got cancer!” These three words changed my life forever. My moment came when I was diagnosed. I then embarked on the largest, unplanned, unwanted, and most expensive journey of my life. My cancer diagnosis was a wake-up call that jolted me out of complacency and inducted me into a battle I neither wanted nor understood.|
Letters from women currently undergoing treatment were divided into two specific themes of distress and coping (Table 3). The psychological distress experienced throughout treatment made clear the potent impact of physical symptoms on psychological well being. Women noted associated physical side effects of treatment—such as hair loss, fatigue, nausea, and pain—as significant psychological stressors. Maintaining one's identity and resolve to overcome ovarian cancer obviously was difficult while undergoing aggressive, multimodal treatment. Chemotherapy often was referred to as poison, and doubt was expressed regarding the effectiveness of a treatment with such high toxicity:
|Coping with treatment|
|For chemos in the hospital, I wore funny glasses with the eyeballs falling down, and I put on large rubber ears. Great compliments to my bald head. I got lots of attention from the staff plus from other patients. We had some good laughs. My doctor calmly told his nurse “that's what happens when a patient gets too much chemo.”|
|I've seen so many people come and go, or “graduate” as I call it; and, if some people are down or negative, I tell them my story of only being able to get chemo—no surgery or radiation to just keep the cancer under control—then they feel better about their treatment. I tell myself “that's why I have to keep on going: to lift people's spirits.”|
|Although I participated in a prechemo “class” at the room in which the treatment would be administered and talked with a nurse about possible/potential side effects and other matters about which the oncologists believe first-timers may want to know, I did not know whether I would feel pain or illness or any other sensations during and after the first chemo session, and I walked in scared and shaking. I took to chemo with me a book I have read a couple of times—a book that always makes me grin and sometimes laugh out loud—and began to reread it. It worked, I relaxed, and laughed, and I forgot to be afraid for the rest of the afternoon.|
|I am working on quality of life, which is a big thing with my oncologist … I continue to plan trips and vacation but with a contingency plan in the event that my disease interferes. Initially, I was very protective of my family: but no more. I helped them work through their initial shock, but now I am concentrating 100% on me. Selfish? I don't think so. By helping myself, I am helping them, too. Only my lack of hair makes them aware that I am not 100%. Sometimes, I have to fake a little to get their attention and help!|
|It did SO MUCH for my psychological well-being to get out of my chemo sick bed (chemo always made me quite ill for about a week) and get back out into the world for another 3 weeks before the next chemo. I worked 3 weeks out of every 4 and continued my volunteer activities. I feel the psychological well-being of “normalcy” 3 weeks out of 4 was vital to my body's battle.|
|Distress of treatment|
|My desk reflects the turmoil going on in my head … bills getting lost in the constant stream of mail/stuff and sometimes it just overwhelms me. I guess we call it chemo brain and perhaps that's what it is but it doesn't make it any easier to get thru the day to day necessities of life. I live alone and am responsible for it all.|
|Looking in the mirror and learning to dress that large, open wound that snaked up my abdomen twice a day was a constant visual reminder that my body would never really be the same, inside as well as outside.|
|Losing my hair the first time around was devastating. It ran in close competition with hearing my diagnosis,|
|The chemo just takes something from the deep inside of me that can only be explained as part of the “spirit.” … I've gone through the nausea stage, and am now beginning to emerge from the “no energy” stage.|
|So now, I'd had it all 2 surgeries, 18 radiation treatments, and 14 chemos or, as we cancer survivors call it, slash, burn, and poison. This is a life?|
“The first chemo was terrifying. I was torn between yanking the tubes and leaving the hospital or believing this might buy me time. I endured 6 monthly doses of cisplatin and cytoxin (more platinum than I wear and World War I mustard gas). What do you say to the nurse covered in plastic from nose to toes, afraid the toxins might harm her unborn child, while she opens your veins? Every treatment brought weeks of vomiting and nausea pills. The last week of each month brought a sense of uplift and healing. Each new month sent me down the abysmal hell hole of fear.”
Despite the distress manifested during treatment, women were eager to share techniques they had enlisted to cope with the psychological challenges of cancer treatment. This both served as a validation of their own methods and offered support and assistance to other women. Women attempting to alleviate the psychological burden of active treatment commonly shared the benefits of keeping active, traveling, and increasing quality time with family and friends throughout the treatment phase.
Of the five stages identified in the cancer trajectory, letters from women in disease remission (Table 4) comprised the largest percentage of correspondence. The investigators divided these letters into two themes: the celebration of survival and the distress and anxiety of survival. Letters incorporated into the celebration theme displayed joyful expressions of accomplishment and healing from women who had achieved remission. Women described how regrowth of hair and return to daily activities enabled them to heal psychological wounds and refocus their lives. A reevaluation of priorities seemed common among women who expressed their intent to embrace their lives with joy and thankfulness.
|Celebration of survival|
|I am proud to say that I went for my 1-year anniversary check-up yesterday … and found I was in excellent health!!! My doctors are very pleased. I feel great and relieved. I feel like shouting from the mountain top that I beat cancer!! It is a wonderful feeling and yet so sad to hear of others not so fortunate.|
|Placing “I” and “cancer” in the same sentence continues to be disorienting. But I am an ovarian cancer survivor. I typed the sentence four times, trying to make sure, perhaps, that both words belonged. They do. The word that makes it possible for me to utter the other two is “survivor”.|
|Last week, I was ready to throw in the towel. I could hardly walk and was still knocked out from the last chemo. This week, I'm walking on a cloud. My oncologist said my ovarian cancer was in complete remission. My oncologist said that, when he first saw me with Stage IV ovarian and lung cancer, he was thinking months. Now, he's thinking years! I have the first year under my belt and am looking forward to a much better year 2000.|
|So … I am now in the “other” phase of my cancer journey: Living with fatigue yet regaining much normalcy. It is a tough place: not sick enough to be in that world but not quite well enough to be in the normal one either.|
|As you are painfully aware, the mental strain of this disease is almost more debilitating than the physical. Now that I am “cut loose” and sitting here trying to piece together my life, I find that I am now scared of just about everything. I used to think I was somewhat competent, but I have been brought down to such a low level that getting back up is tough.|
|Getting on with the rest of our life after cancer is one of the toughest jobs people face. In some ways, it can be tougher than getting through those days of diagnoses and treatments.|
|These first few months without treatment have been a little scary. I feel like I'm cured but know only too well the statistics on recurrence—somewhere between usually to always. So, I go on with my life and will deal with recurrence if and when it comes.|
|After my last chemo treatment, I had a real mix of emotions—so elated to be done, but now, I had a feeling I wasn't doing anything to fight it … Not that I haven't had doubts now and then—those aches and pains that come and go, and you wonder …|
|I am obsessed with cancer. I am certain my cancer will return. I know that is unhealthy, but I feel like I'm just waiting for that phone call telling me it's back.|
|My cancer is in remission but my mental state is a mess. My fear of recurrence is overwhelming and destroys my life and the time God gives me. I am embarrassed but have not been able to get it in control, even though I realize so many of your brave correspondents are in worse condition. I am thankful for the condition my cancer is in now, but it doesn't seem to help my mind.|
Within the remission domain, letters concerning the distress and anxiety that accompany remission were more common than letters that celebrated survival. Awareness of the reality that recurrent ovarian cancer is common and indicates a much poorer prognosis was expressed by women who confessed that fears of recurrence dominated their lives. Completing chemotherapy triggered renewed fears and distress, because they were no longer actively fighting disease and felt that nothing could be done to actively avoid recurrence. In the words of one woman:
“The most difficult thing about dealing with ovarian cancer for me has been the psychological work of maintaining perspective. The most crushing side effect is fear. Nausea, loss of hair, neuropathy are nothing compared to the sense of a sword hanging over your head, forever! Even after all the effects of the chemo were over, I experienced a sense of being not well, vulnerable, of living on borrowed time.”
Letters from women with recurrent disease displayed two dominant themes: coping with recurrence and distress of recurrence (Table 5). Sixty-two women described strategies they used to cope with recurrent disease. Often, this theme focused on continuing life activities despite ongoing treatment and the acceptance of ovarian cancer as a chronic disease. Distress associated with recurrence was addressed in 23 letters within the domain. For women still struggling to overcome the effects of initial treatment, recurrence brought on renewed fear, anxiety, and physical symptoms. The discovery of recurrent disease seemed to indicate to these women that their cancer was not curable. One woman wrote the following:
|Coping with recurrence|
|It was so encouraging to hear everyone's stories and to know that a recurrence is not always a death threat. Some of the women had had several but were sitting there healthy and vibrant looking. I had my recurrence a year ago, May and have had 11 months of chemo-free “health”. Instead of fearing, I knew that it happens a lot, and I would probably be okay for awhile longer.|
|I am still feeling very well, working full time, and loving life. I am making plans for the future, keeping in mind that my CA-125 readings may mean I have recurrence. If so, I'll just handle it. I can remember telling my husband after my last (fourth) surgery “NEVER AGAIN,” but time always dims the memories, so I'll do it again if I have to. I will not give up until my doc says there is nothing else to be done, and then I'll get a second opinion … They also asked you to define what you think quality of life is … I said, “it is enjoying life, happy and free from pain, with as little medication or medical help as possible.”|
|Even though, deep down inside, I knew it would come back, I disassociated myself from the cancer and proceeded with life as before. We even went out of the country 4 months to the day of surgery, me with syringes, needles, wig, and a Port-a-Cath. My friends were horror stricken I would chance such a thing. Mentally, even with all the reoccurrence, I am doing fine. My outlook and attitude, with short lapses, has been very positive. I cope largely by keeping myself very busy.|
|Distress of recurrence|
|I've had a recurrence. It really sucks big time. I was so very angry, not at God, not really at anything. I'm really not ready for that “chemo” lifestyle.|
|I was informed in his office that my worst nightmare had indeed occurred: The cancer was back. All I remember at that moment was the incredible anger that welled up inside of me. Anger at the cancer for daring to come back and show its ugly face again. Anger at the oncologist for being “the messenger” after he told me 4.5 years previous that this would almost certainly not happen again. Anger at the idiot internist who couldn't see it coming, even after I practically handed him the diagnosis on a silver platter.|
|I got some terrifying news today. After only 6 months in remission, it looks like I am having a recurrence. It seems like my whole world is crashing down around me. I just began to feel like I was back in the real world again—and there for my 5-year-old daughter after a year of difficulty—and am—it's back. I feel hopeless—like the recurrence has put me into the class of lifetime chemo patient—and probably not as long a life at that. I had worked hard at putting the cancer behind me. Now, it's all in front of me again …|
“In some ways, news of the recurrence was almost more devastating than the initial diagnosis. My hope of being cured was shattered. I was terrified that the cancer was back and that it was the beginning of the end.”
Advanced disease and end of life
The smallest theme, comprised of 61 comments, was reflected in correspondence from women who were coping with advanced disease and end of life issues (Table 6). Most of these women shared feelings of coming to terms with their own mortality and described the feeling that making plans for their memorial services gave them some comfort and control. The need to live the remainder of their lives to the fullest extent was evident: Many women emphasized the importance of spending time with family and friends and continuing activities with ovarian cancer advocacy or support groups.
|My time is limited, and they are keeping me as comfortable as possible. My attitude is still positive, but I have also accepted my fate, and I am at peace with our decision.|
|My spirit is positive and willing, and I'm fighting to live until I die. Not many people want to talk about it, but I do. My husband and sons have discussed it with me, as the topic was also brought up at groups. Surprisingly, most were open to it.|
|I want to die young, as late in life as possible.|
|I have written to two people on the list, both of whom have died. It is very hard, but I would not have given up the chance to know these women. I could not believe that women can't bear to see the names of people who have died. It is the terrible reality of our disease, but I think hiding from it or treating it like it doesn't happen is a mistake. It won't prevent you from dying, just because you won't look at the names of those who have.|
|I, and perhaps others too, have used the word “pooling” to mean dying suddenly without much prelude. I always think of it as “going out like a light.” It wasn't used to avoid the word “dying.” I believe many of us used it as a way to capture the suddenness that we hope our deaths might be graced with. I don't want to linger. I prefer to slip away suddenly rather than slowly.|
|I was so happy, but now it's back, and I've decided not to take any more treatments. I'm giving up. I don't know if you'll ever read my letter, but I'm grateful that I can at least say it: I'm giving up. I can't take it anymore. I know I should fight until the end, but I have no more faith. I don't know why God has allowed this. I have small children who need me, and I need them right now. I'm so depressed, angry, and I hate my life and my kids know I'm giving up. It's affecting them. I don't know what to do. I feel so lonely and confused, and I don't know what can help me. I've lost so much because of cancer. I hate it.|
Survival Skills and Coping Techniques
Several important themes are summarized in Table 7. Women most frequently discussed the importance of maintaining a sense of control over their lives, a theme that emerged in 143 letters. This was particularly evident in those who felt at times that their lives were spinning out of control:
|Sense of control|
|All I could think of was that I was to die soon and needed to start saying goodbyes to everything I loved. I searched for whatever meaning I could in the illness and asked the perennial, “why me?” I cried my heart out over my previous and current losses. I got my will in order. I arranged for the type of funeral service I wanted. I prepared for that one eventuality—death. It was my way of staying in control.|
|I handled the hair loss well and felt more in control because I had my friend shave it off for me once I could see it was starting to come out.|
|I FINALLY, today, decided to say STOP!!! I have been working only 6.5 hours a day at my job; and, as of today, I have made up my mind to go back 8 hours. My doctors can't seem to give me any answers, they don't know why either. I don't want to go back on the chemo either; but, then again, I don't want this to get out of control. If you were in my shoes, what would you do? My husband thinks I have lost my mind, but I feel that it is time that I take control over my life and to get back to where I was before.|
|WARNING: CANCER CURE IN PROGRESS. Former “cancer personality” learning to be assertive: sometimes misfires and gets vicious. ENTER AT OWN RISK.|
|Anxiety and depression|
|My hospital friends have been a great support, and my family has been wonderful; but, sometimes, I need a little help maintaining a positive attitude. Some days I feel like Wiley Coyote with the anvil poised over his head waiting to drop.|
|I am totally confused! And stressed! I want to be positive without being in denial.|
|The only peace I find in my life is when I sleep; and then, every morning, I get that same sinking feeling when I wake up: “Oh yeah, I have cancer,” I tell myself.|
|I am scared to death, and I know millions of women feel just like I do. I watch my children grow up, and it seems as though everyone is moving and I am sitting still. Of late, my depression is serious, and my doctor has put me on something I can't remember, but it has helped.|
|Focus on living|
|It has also helped to think of the cancer as a “chronic disease”: one that I'll have to deal with from time to time.|
|It is so wonderful they are learning more all the time making the word CANCER not a death threat anymore.|
|Although I have been on chemo most of the last 4 years, I'm still able to do things I enjoy. I volunteer twice a week, work in my yard and garden, and play golf. I cope by keeping busy.|
|Statistics can kiss my ass.|
|Healing is a journey. It's important to be a good tourist: Keep your eyes open, ask questions, relax, and enjoy!|
|Appreciation of life|
|Hey: It's a great day. I feel absolutely great. There is no way I am going to die today—I feel too wonderful. Then, in the blink of a night's sleep, tomorrow becomes today!|
|When people comment or seem surprised because I stay so “up” and smile a lot, I just say, “it is because I refuse to waste any of my days feeling negative or sorry for myself.” I stay as busy as my poor body will let me.|
|It is a crazy, sometimes very sad roller coaster we survivors ride, but I LOVE LIFE and am grateful for each moment.|
|We are focused on each day and the beauty of each day. I have an “abundant blessing” book. A laugh with my precious 12-year-old daughter is not just a laugh. We connect, and time stands still as she hugs me and tells me how much she loves me. A walk with my husband under the autumn leaves, looking at stars—everything is so precious.|
|Supporting other survivors|
|I have a few mixed feelings about it. I don't want to get so consumed with cancer that it takes off to fill my whole life. There are many times I just want to forget it. (I know that's impossible.) Still, there is so much to be gained by talking to others, and perhaps I have done some small thing that could help someone else.|
|Since I was diagnosed, I became a volunteer with the American Cancer Society. I visit newly diagnosed patients. Each patient has expressed how grateful they are to know there is hope after being told they have cancer. I think I got as much satisfaction out of talking with them as they did!|
|A lot of people said my attitude was uplifting for other women. Yet, my feeling when I attend these meetings is these women are so strong to have endured the shocks of this dreadful disease, I should be able to also.|
|I have been able to help a couple of newly diagnosed OVCA women by providing guidance on where one goes for the best medical advice/treatment, encouraging them to think positively about the future. It “fires me up” to see what that little bit of help means to these women to have this support.|
|I thought I had the ultimate answer; and, by keeping the smile and doing only goodness, life would go on and be fun and happy. I guess somewhere here I have lost something. I set a time limit for the pity party, 24 hours, and that is all; then, we get on with the task at hand.|
|Keeping a positive attitude and making a plan for my future gave me the tremendous will to get well.|
|So, I guess my 1-year anniversary is approaching. As Saturday approaches, my stomach is doing flips; and, when the random thoughts of that day come into my mind, I get a “pit in my stomach.” I am sure we all feel that we wish we did not belong to this club and would rather not celebrate this kind of anniversary. But, I guess the glass can be half empty or half full.|
|Imaging life as a game in which you are juggling some five balls in the air. You name them—work, family, health, friends and spirit—and you're keeping all of these in the air. You will soon understand that work is a rubber ball. If you drop it, it will bounce back. But the other four balls—family, health, friends, and spirit—are made of glass. If you drop one of these, they will be irrevocably scuffed, marked, nicked, damaged, or even shattered. They will never be the same. You must understand that and strive for balance in your life.|
|I decided, after everything I've been through, it was time to concentrate on me, which is probably long overdue. Actually, my family is so excited for me when I have another piece of my puzzle put into place.|
|… Life with or without cancer should be a happy balance of a healthy emotional state, deep spiritual faith, and having a sensible and healthy lifestyle.|
|Accessing all possible treatments|
|I feel there is a big correlation between the mind and the body: Comedy has been a big boost for me when my spirits are down. In order to survive, I believe you need chemotherapy along with alternative therapy—mind/body connection (meditation), comedy, support from family and friends, vitamins, and (most of all) the spiritual comfort and support. Best of luck to you all in your “road to survival.”|
|The things that helped me during this difficult year were: healing touch, massage, wonderful friends and family (whose help I fully accepted), resources (such as Conversations” newsletter and Coping magazine), journalizing, prayer, many hot baths and showers, tapes, taking “one day at a time”, a second-opinion woman doctor who talked about “hope” and “fighting.” and a spiritual director.|
|If I had to summarize what I've learned from living with cancer for 20 years, it would be this: Reach out to friends and family. Share your fear in support groups and with professionals trained in cancer issues. Seek excellent medical care. Take steps to rid your life of stress and to add that which would make you happy. Do not stop living but, rather, plan for the future. Nurture yourself physically, emotionally, and spiritually. Never give up. Refuse to lose the emotional battle with cancer, because sometimes your emotions can steal more of your life than the cancer does. Pray, pray, pray for the strength to endure.|
|I am a survivor and, too, believe that nothing is going to happen to me today that God and I can't handle. I don't spend much time allowing myself to fret and stew about my illness or let it get me down, as I have too little time for that. I am grateful for the 3 years I have had and plan to defy the odds and have several more on this earth.|
|From the moment I was told I had ovarian cancer, I've been in the survival mode. I know I am not through here! I have not been depressed. Strangely, I feel no anger and am more at peace than I ever could have thought under the circumstances. My desire has been to move forward with this and to rid myself of the cancer.|
|After all these years, I still cannot believe I have cancer; and it doesn't get any easier with all the tests, etc. However, as each month passes, I am happy I am into the next. I also cry buckets, still! I was always a cry baby anyway. Sometimes, the tears are so large and salty I amaze myself and wonder why. I believe it releases all the pain. So, when I feel like crying, I get it out of my system, and I feel great. Having cancer is a heavy load, whether you are cured, getting cured, or living with it.|
|I have allowed myself to grieve for my hair loss, my body image change from three surgeries, my physical limitations and pain. Grieving has given me yet one more way of becoming healed.|
|I sat next to a woman, waiting for a blood test and asking me if it was worth the fight to exist. She had three tubes coming from her chest. I just held her hand and said it was worth the fight. But I got into my car and just put my head on the steering wheel and had a good cry. This continued at home that night, and my husband was really frightened. He had never seen me so distraught, throwing things around, angry with God and all people. I calmed down after a long time, took a Tylenol, and just had a terrible headache the next day. You just can't go around smiling all the time. Sometimes you have to break down, and only those who have experienced the damn disease know what we are going through.|
|Maybe part of my depression is a deep feeling of guilt that I'm still here and so many of my friends is not.|
|I feel “FADD”, otherwise known as fear, anger, disappointment, depression.|
|Through my many years of treatments and surgeries, I relied heavily on my family and friends to help sustain my sense of humor and to bolster my courage. I truly believe laughter helps you get well—even though it hurts new sutures and old adhesions.|
|Humor is very important and enjoyable to me all the time, but now I rationalize that it's also therapeutic!|
|One day, I was laying in the hammock. It was beautiful outside; but, for some reason, I was down. I started to cry, and I was thinking, “Why am I crying? It's so nice out, with birds and sunshine all around.” So, I had a tear race. Letting the tears run down my face trying to see which side would get the farthest down my face (you have to stop to see which side wins). It ended up making me laugh to myself and feel much better (left side won).|
|I'm looking for the humor all the time, because it really is the biggest help! It lifts my spirits as I feel a laugh “welling up” rather than tears.|
|I am trying to learn, adjust, and live as close to normal as possible, if anyone know what normal is.|
|Sometimes I wonder if chemo/cancer has stolen our identities, and perhaps we begin to point it out to others as though we are saying, “Hi, I am Susie (chemo-hair) Jones. Would I have anything to converse about if I didn't have this disease and feel a need to share/explain/excuse it to others?? So, what the heck is NORMAL anyway? Don't think many of us remember.|
|Six months ago, I was a “normal” 40-year-old working mom, a Girl Scout leader, soccer Mom, track Mom, baseball Mom—I was involved in all the things that represent a middle American family. Now, I am a terrified woman with ovarian cancer.|
“Here's how I look at it: Cancer may be tough, but I'm tougher. I'm here to be the statistic that's not the statistic. I am not cancer, I just happen to have cancer!” “Cancer is not my life; it's not my identity; it's not who I am or what I'm about.” “Don't ever underestimate the power and energy of a team to see a person through a life challenge.”
The second largest theme, found in 82 letters, was the expression of anxiety and depression. Most women wrote about the uncertainty of the future and a sense of panic or of exploding with emotion at times. Survivors also discussed living with uncertainty and the stark reality that, for many with advanced disease, the prognosis was dismal. Similarly, women described feeling depressed but felt that these feelings were justified, because being overwhelmed with the reality of the disease led to inevitable depression.
An important technique to combat these psychological difficulties was to focus on living, an idea that was expressed in 54 letters. Women depicted the importance of disregarding statistics about their prognoses or the possibility they would succumb to the disease, focusing instead on living for today and on the future. They demonstrated resolve with statements like always planning, always doing, that's part of the treatment—LIVING!
A positive emotion that was expressed in 61 letters was a renewed appreciation of life. Women frequently wrote to describe how they felt: as though life had been altered significantly by the ovarian cancer experience and how small events or experiences previously ignored in their lives were now of vital importance. This most frequently involved enjoying relations with others or enjoying the simple pleasures of life, such as those found in nature. Another positive display of coping involved 43 comments regarding supporting other survivors. The ability to provide support on an individual basis to a woman newly diagnosed with ovarian cancer or to engage in broader efforts such as starting support groups, participating in fundraising activities, or becoming involved in national ovarian cancer advocacy were expressions of purpose in their fight against disease.
Forty-one letters comprised the large theme of optimism, in which women keenly displayed their beliefs in the importance of a positive attitude. They frequently cited literature promoting the mind-body connection and the importance of having a positive outlook to guide the future. One woman described her optimism: “My way of coping is simply put: positive thinking sprinkled with complete realism. Rather than envy the people I know who have never been touched by cancer, I think often of the many I knew who were diagnosed after I was with several different types of tumors and who are no longer here. I actually consider myself very lucky!!”
Women also shared their thoughts, often in the form of advice, regarding balancing work, family, attention to illness, and personal time. Many shared the belief that illness was brought on in part due to stress and a life out of balance. Seeking balance, which was addressed in 20 letters, was not only a new insight brought on by illness but also a method many described as an attempt to avoid recurrent disease. For those with active disease, the belief of keeping their illness in balance and not letting it take over their lives also was important.
A need to not give in to disease and obtain access to all possible treatments was expressed in 20 letters. A significant quantity of information related to complementary therapies was discussed, and consideration of alternatives was a common recommendation to others. The need to seek alternative treatments seemed to be linked to the perception that limited treatment options were available, particularly for women who had exhausted conventional therapies or who opted not to participate in investigative treatments.
Ten comments addressed the smaller theme of persistence. Women described continuing to explore treatment options and fight their disease, despite limited odds. Those letters shared a sense of becoming tunnel-visioned, putting on blinders to the outside world to focus on beating the disease.
In nine letters, women encouraged others to cry, express their fears, or express emotions through journal writing to communicate their feelings as an important aspect of healing. Related to this was the use of humor, which was described by five women as particularly helpful during the darkest days of treatment, when life seemed to unravel. Seeking normalcy was a related theme that was described in three letters as an attempt to resume roles and activities characteristic to life before the women were diagnosed with ovarian cancer.
Although the vast majority of the data from the correspondence was categorized according to the COH QOL-Ovarian Cancer Patient instrument, the investigators also identified QOL concerns that were not addressed by the tool. After the initial analysis of the data, both the COH QOL-Ovarian Cancer Patient instrument and the model were revised to reflect the issues of greatest importance to ovarian cancer survivors. Because of this analysis, 2 items were altered, 5 new items were added, and 1 item was deleted from the 45-item instrument. Although these women experience many of the same fears and uncertainties as other cancer survivors, there are several psychological factors that seem unique to ovarian cancer. For example, these women experience profound isolation, even from other cancer survivors, because they are diagnosed with a minority cancer and do not have as many options for peer support compared with patients who have other, more common cancers. Ovarian cancer survivors also contend with anxiety resulting from the genetic association of the disease, and they often fear for their daughters more than they fear for themselves. Finally, because the trajectory of ovarian cancer includes aggressive, often toxic treatment, periods of remission and recurrence create the considerable stress and uncertainty of living with this chronic, life-threatening illness.
The significance of analyzing natural correspondence from women with ovarian cancer is evidenced by the candid descriptions these women provide regarding the psychological impact of their disease. The breadth of emotions and psychological challenges confronted by ovarian cancer survivors is conveyed vividly and explicitly, because the participants in this study were not prompted by a survey or an interviewer to discuss specific concerns. Instead, they shared their thoughts on issues of greatest importance to their QOL after they were diagnosed with ovarian cancer. The unique data highlight psychological concerns throughout the cancer trajectory and the mechanisms and strategies for coping enlisted by these women. Despite the fact that patients experience significant fears, uncertainties, and physical symptoms, as evidenced by these letters, many women are able to find positive yet realistic meaning in their disease.
However, the nature of these data also served to limit the study in several ways. Analysis was limited due to an inability to relate the findings to demographic or disease data. The correspondence reflects the perspectives of women who were subscribers to the CONVERSATIONS! newsletter and may represent younger women, who are more proactive regarding their disease. The sample also likely reflects survivors with greater literacy, and future QOL studies are needed that include diverse populations. However, the extraordinarily large sample of correspondence provides a scope that likely reflects an accurate portrayal of the psychological well being of ovarian cancer survivors.
The 21,806 voices of CONVERSATIONS! should serve as a challenge to health care providers to address the psychological issues that affect women with ovarian cancer. Psychological issues have a significant impact on QOL and must be addressed throughout the disease trajectory. Additional resources to aid women and their families in coping would be beneficial in improving QOL. Health care professionals who are aware of the common psychological stressors of diagnosis, treatment, remission, recurrence, and end of life may identify more readily the need for support and assistance with coping strategies, thus improving the overall QOL of their patients. Providing psychological support requires interdisciplinary collaboration guided by a perspective of QOL in cancer survivorship.
Ultimately, the investigators plan to use the coping strategies identified in this study to build an intervention that health care providers may employ to assist women recently diagnosed with ovarian cancer. The research team also currently is using the revised COH QOL-Ovarian Cancer Patient tool, along with a demographic and treatment questionnaire, to survey 3300 ovarian cancer survivors in a study that began in November 2002. They hope that this revised tool will be used in the future by clinicians to assess QOL in women with ovarian cancer and in clinical trials for this population, thus broadening the scope of future research.
The authors acknowledge the consultation of nurses with extensive experience in ovarian cancer and quality-of-life issues: Virginia Martin, R.N., A.O.C.N.; Lois Almadrones, R.N., O.C.N.; Alice Spinelli, R.N., A.N.P., O.C.N.; Susan Temple, R.N., M.S.N., E.T.N., A.O.C.N.; Cynthia H. Umstead, R.N., M.S.N., O.C.N.; Susan J. McIntyre, R.N., M.N., A.N.P., E.T.N.; and Patricia Rice, R.N.
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