This study aims to analyze the descriptions in breast cancer journals written by patients and to understand the experience of benefit finding among patients with breast cancer. We selected 22 such breast cancer journals written by patients published after 2000 in Japan. The extracted statements related to benefit finding of patients experiencing breast cancer from the 22 journals were subjected to a qualitative analysis, and the following seven benefit finding elements were extracted: “Gratitude toward others”, “Benefits due to cancer”, “Happiness at living a normal life”, “Realization of and satisfaction with my growth”, “Awareness of the meaning of my existence”, “Hopes for life”, and “Willingness to contribute to others”. These benefit findings suggest that these particulars fulfill cultural, practical, spiritual, and social meanings, and lead to self-revaluation in daily life.
The incidence and mortality of breast cancer in Japan is increasing [
This study analyzes data obtained from “narratives by patients”. Since 1998 when a study on Narrative Based Medicine by Greenhalgh and Hurwiz [
As concepts similar to BF, resilience, and post traumatic growth are also concepts known as adjustments to stress and trauma. In this study we perform an analysis using the concept of BF as the actual intensities and degrees of stress and trauma at surgery for breast cancer are not clear.
This study aims to understand details of BF for patients with breast cancer experience arising from the “disease”, and to gain ideas useful in the support of patients with breast cancer, based on the data from an analysis of descriptions in journals published in Japan.
Breast cancer journals written by patients (Journals): here defined as “private records where patients describe the process of struggling with a disease” as defined by Kadobayasi [
Benefit finding (BF): defined as personal positive changes brought about by the experience of breast cancer (and a cognitive response in adjusting to stressful circumstances).
Data were collected from May to December, 2013.
We searched books related to breast cancer in the Web database of “Paramedica”, a second-hand bookstore specializing in private volumes where patients describe the process of struggling with a disease, and identified 199 volumes. Of these 166 were available as of August 25, 2012, and excluding 61 volumes published before 2000, we reduced the number to 105. Of the 105 we excluded 22 volumes that met the following exclusion criteria: 1) lack of cognitive and mental descriptions, 2) the author is not a patient, 3) the author is not Japanese, and 4) includes cases of other kinds of cancers. After examining the content of the remaining 83 volumes, we chose and analyzed 22 which were determined to have been written well enough to be analyzed. In Japan most laws related to dealing with cancer issues were established in the present form after the year 2000. Considering this background, in the paper we decided to focus on and analyze the books published in 2000 or later.
Having read through the 22 volumes, we extracted statements that express positive changes brought about by the experience of breast cancer. After coding the statements and paying attention to similarities, we assigned categories and sub- categories.
Through discussion with co-researchers during the process of the analyses, we ensured reliability and validity.
In using data of struggles with diseases published and openly available in such journals, we took care to handle the matters reported not to violate copyright, not to harm the persons and personalities appearing there, or bring dishonor to the authors.
Author, Year | Occupation | Title | Publisher |
---|---|---|---|
1. Machiko MATSUI (2000) | sociologist | Living with Cancer in America | The Asahi Shimbun, Co. |
2. Eiko UCHIDA (2001) | patient advocacy group leader | I hope to Pair Boobs | Hokusui* |
3. Michi NAKAJIMA (2003) | nonfiction writer | Fighting Cancer, Learning from Cancer, Living with Cancer | Bunshun Bunko* |
4. Minori MIYATA (2003) | poet | Breast Cancer-Decision Making for My Life | Lyonsha* |
5. Reiko TACHIKI (2004) | journalist | Boobs in Paris and Boobs in Japan | Shueisha, Inc. |
6. Mariko YAMAGUCHI (2004) | housewife | Why My Breast Cancer Was Overlooked What Can Be Done by Me Who Have Half a Year to Live | The Asahi Shimbun, Co. |
7. Setsuko TAHARA (2004) | ex-caster | Farewell Note-Breast Cancer Journal with Laughter | Shueisha, Inc. |
8. Setsuko TAHARA (2004) | ex-caster | Give a Smile until One Last Breath | Kodansha, Ltd. |
9. Mikiko OTONASHI Kunio MURAI (2004) | actress (husband) | My Wife’s Breasts 16 Years for Two of Us Who Lived with “Breast Cancer” | Kobunsha, Co., Ltd. |
10. Eri HIRAMASTU (2004) | singer | My Room, a Dress Shirt, And “My Truth” | Shueisha Inc. |
11. Kazuko HAMANAKA (2004) | patient advocacy group leader | Holding a Hope in My Mind | Gariver Products, Co., Ltd. |
12. Michiyo YOKOUCHI (2005) | singer, dancer | Letters to the Child from Mother with Cancer, Forever | Sony Magazines, Inc. |
13. Takako WAT (2006) | patient advocacy group leader | Treasure Box of Love and Courage | Doyukan, Inc. |
14. Tsuneko OGURA (2006) | doctor | Wil-Before You Sleep, A Cassette Tape of Love Dedicated to My Son from a Woman Doctor Who Got Cancer | Bookmansha* |
15. Yuko EMON (2006) | actress | Emon Yuko’s Diary of Cancer and Slow Life | The Asahi Shimbun, Co. |
16. Atsuko MIYAZAKI (2006) | nurse | Dying As We live | Shinpusha* |
17. Mayumi HONDA (2008) | journalist | I Can’t Believe That a 34-Year-Old Person Gets Cancer | Evidence-sya Inc. |
18. Rika YAMAUCHI (2008) | nurse | A Nurse Barely Living | Asukashinsha Publishing |
19. Tsuneko OGURA (2009) | doctor | Words from a Woman Doctor with Breast Cancer, A Positive Prescription for Those Who Experience Relapse | Shufunotomo, Co., Ltd. |
20. Makiko SATO (2010) | freelance writer | Living with Breast Cancer After Menopause | Chuokoron Shinsha, Inc. |
21. Yoko SANO (2011) | children’s picture book writer | I fully Intend to Die | Kobunsha, Co., Ltd. |
22. Kaoru ANDO (2011) | doctor | When a Woman Doctor Gets Breast Cancer | Metamor Publishing, Co., LTD. |
*As the publisher has no English name, we spelled the name based on the sound of Japanese letters.
This category is generated from four sub-categories and describes situations related to overflowing feelings of gratitude and deepening relationships with closely related persons, family and patients with the same disease. The sub-cate- gory <happiness in deepened family ties> includes codes identified by [I realized my family’s kindness after developing cancer], which shows awareness of members of the family who accepted the patient, and [I noticed myself as needed by my family] which expresses that the experience of family relationships had deepened and that there were feelings of satisfaction with time spent with the family. <Presence of a partner that became more important to me> expresses an
Category | Sub-category | Representative Code |
---|---|---|
Gratitude toward others | Happiness in deepened family ties | I came to enjoy the time spent with my family. |
I felt gratitude to my family. | ||
I found I can relax best in the family. | ||
Presence of a partner that became more important to me | I noted another side of my partner’s personality. | |
I noticed that the load weighing me down has been lighter when I am with my husband. | ||
Realization of and gratitude toward people who accept me | I came to understand the feelings of others after developing cancer. | |
I noticed there are people who listen to me after developing cancer. | ||
I noticed myself regenerated by consideration of others. | ||
Importance of words spoken by those with the same experience | I realized that words spoken by those with the same experience are encouraging. | |
Benefits due to the cancer | Activities to be engaged in after a cancer diagnosis | I enjoy hobbies I prepared for in order not to be discouraged. |
What I think was lucky | I decided to think that I was able to quit smoking as a reward for the amputation of the breast(s). | |
I thought that I was lucky to have a right to sit in priority seats (in public transport) thanks to the cancer. | ||
Happiness at living a normal life | Pleasure in doing things that are taken for granted | I was grateful that I could live to welcome the New Year. |
I appreciated that I could perform daily activities. | ||
A feeling of peace recognized through experiencing pain | I felt happy to do daily activities by myself. | |
I felt the joy of life without physical pain. | ||
Realization of and satisfaction with my growth | My growth achieved through the cancer experience | After the cancer experience, I became able to see a lot of things that had been invisible before. |
I learned the philosophy to be able to change something unfavorable to favorable. | ||
I felt my own growth through experiencing cancer. | ||
Pleasure in re-recognizing my own skills | I was pleased to recognize my skills. | |
Awareness of the meaning of my existence | Awareness of the meaning of my existence | I became aware of my own existence after developing cancer. |
I began to regard myself positively through experiencing cancer. | ||
Hopes for life | Importance of life recognized through experiencing cancer | Thanks to cancer, I became able to notice what was impossible before. |
I needed to face obstacles to learn about life. | ||
I want to cherish my valuable experience of breast cancer. | ||
Willingness to make the most of life` | What made me positive is holding on to life rather than acceptance of death. | |
Although we cannot change our innate fate, we can change destiny by ourselves. | ||
I wish to treasure my limited time to the full. | ||
Time given by cancer to start life again | I thought that I was given time to face my death. | |
I learned to think the cancer was not entirely bad because I can prepare for it to the last moment. | ||
I want to cherish every moment of my life while preparing for death. | ||
Appreciation for experiencing cancer in the present age | I appreciate that I developed the cancer today when better treatment is available. | |
Awareness of living with cancer | The image of cancer has changed from death to living together. | |
Willingness to contribute to others | Cancer experience that impels me to take advantage of | I don’t want anyone to experience breast cancer. |
I wish to support others as much as I can. | ||
I must have some mission because I am still alive although I was diagnosed as cancer. | ||
Improved understanding of the attitudes of healthcare providers toward patients | I became able to understand patients’ feelings. | |
I reconfirmed my policy to extend a supporting hand to patients as a nurse. |
awareness and sense of ease when the patient is in the company of the family, specifically the husband. The patient realized or discovered kindness and new aspects of the relationship with the husband, as shown by the statement that the person who follows me with the warmest heart is my husband, always staying with me. Patients tried to create time that was spent where husband and wife were alone, something which usually becomes possible after retirement, and they became aware of this as a fulfilling time for the couple. This category also includes the awareness that the existence of the husband eases the psychological burden on patients. <Realization of and gratitude toward people who accept me> expresses the awareness that the patient feels supported by people other than family, and the patients realized they became more considerate of the feelings of others after developing cancer.
[Kind support from others is an unexpected gift arising from gratitude] expresses that patients were aware of feelings of gratitude towards consideration shown by others, and discovered that support from others have an effect on both parties (the patient and others). <importance of words spoken by those with the same experience> expresses that the words help alleviate mutual feelings of distress which is possible only because both have experienced the same kind of cancer.
This category is generated from two sub-categories which describe the experience where patients felt “benefits” clearly in their daily life due to the disease, cancer. <Activities to be engaged in after a cancer diagnosis> includes cases where hobbies patients had thought about for themselves, considering the pre- sent and future health conditions, now became enjoyable activities in daily life and not only for coping with cancer. <What I think was lucky> includes situations such as that [I decided to think that I was able to quit smoking as a reward for the amputation of the breast(s)]. This code also represents the thought that this (the diagnosis) had a better effect than had been expected, implying “a bonus unexpectedly earned” (former ideas) and “an active effort to decide to regard something previously unfavorable as a reward” (latter).
This category generated from the two sub-categories describes an awareness that patients recognize the value of things and matters in daily life that are taken for granted and which they had not noticed before developing cancer. <Pleasure in doing things that are taken for granted> expresses situations where patients feel happy to see annual events such as the new year and birthdays, recognizing that being able to be a part of all of such daily activities as a source of joy and happiness. <A feeling of peace recognized through experiencing pain> depicts situations where patients have noticed how happy and carefree life without physical pain was through experiencing the physical pain due to cancer, things they had taken for granted before experiencing cancer.
This category is generated from two sub-categories describing situations where patients became aware that they had the ability to cope with cancer and overcome hardships.<My growth achieved through the cancer experience> describes situations where patients became aware that their perspective had changed through the experience of cancer, and realized that they themselves were able to develop despite the cancer and felt appreciation for the change.<Pleasure in re-recognizing my own skills> occurs when patients recognized that they themselves have developed skills after making efforts to cope with the distress due to cancer. As shown by the code [I would not have been able to make such efforts if I had not had this negative experience], patients recognized that pain and distress due to cancer had drawn out and helped develop their abilities.
">This category describes the positive awareness displayed by patients in relation to their existence. This awareness comes from many different experiences that the patients had, such as noticing something new and feeling happy. As this category is generated from one sub-category, we assigned the same name to both the category and the sub-category. The following statements represent this situation: I sometimes feel the meaning of my existence, thinking that suffering from cancer was not just a waste when I listened to the problems of someone else and the person thanked me, and I feel that I have come to appreciate myself more than before I developed cancer.
This category is generated from five sub-categories and describes an awareness of the meaning of being alive and the thought that I have to make the best effort to the last minute.<Importance of life recognized through experiencing cancer> expresses situations where patients realized the significance of their life more deeply, knowing the profound meaning of life as described by [I realized the joy of living] even through the cancer that makes patients think about death and brings much distress.<Willingness to make the most of life> is the situations where patients try to concentrate energy on the time they are alive with an awareness that the time they have left is limited.<Time given by cancer to start life again> expresses the awareness that patients had second thoughts on how to live until the moment of death, and tried to complete their lives in a satisfactory manner, as described by [I want to cherish every moment of my life while preparing for death].<Appreciation for experiencing cancer in the present age> shows gratitude at being able to live positively with hope because the development of cancer treatment makes physical pain less severe than it used to be.<Awareness of living with cancer> shows that patients changed their ideas about cancer, regarding it as a partner to live together with rather than an enemy to fight.
This category is generated from two sub-categories and describes the inclination that patients want to assist and contribute to the lives of others by making use of the cancer experience.<Cancer experience that impels me to take advantage of> expresses the sense of mission of what the patients would like to or feel a need to (an urge to) make use of their experience of cancer to assist others who suffer from the same distress.<Improved understanding of the attitudes of healthcare providers toward patients> expresses the decision of the authors of the report here who are healthcare providers to make use of their experience with cancer patients in providing care.
Like the authors of the breast cancer journals written by patients (Journals) analyzed in this study, it can be inferred that many women who undergo amputation of the breast(s) are subject to severe psychological trauma as they notice their change in appearance and feel lost and imperfect as humans. The published journals may be an expression showing that the authors who experienced to live with the disease while facing and suffering from this condition desired to contribute a record of their experience to society. This section examines benefit finding (BF) as extracted from the journals by category, and finally provides a discussion of BF.
Examining the matters of the codes in
After the amputation of the breast(s), changes in appearance as well as functional disorders occur, and patients are subject to these physical changes feeling that they have been deprived of a feminine trait. This experience may cause a crisis in or loss of self-image. In this case patients become aware that they are supported and needed by the family, and they come to feel they can be themselves in their family. These discoveries may remind them of the value that they have in themselves. It can be inferred that support by the husband makes them realize that they are wives and females even though they have had their breasts removed, giving them a secure and strong sense of safety and pleasure. Therefore, it is suggested that becoming aware of <Other sides of the partner’s personality> is a discovery in the relationship of the couple, and the relationship becomes deeper and stronger. The pleasure obtained when patients realize that they have remained the same and are still playing their roles in the family, and that their ways are not inferior to what it was before losing their breast(s) would be a significant factor to improve their resilience as patients with breast cancer. Although there is a similar awareness in the relations to friends and close persons other than family, patients experience new facets in relationships. It can be inferred that they may have many opportunities to feel thankful for support provided by the people surrounding them in writing and publishing the breast cancer journals.
People who have experienced breast cancer confirm and revaluate themselves in terms of triple-structured relationships with husband, family, and other close persons. They may reconstruct their identity, something which has nearly entirely been taken away from them, in the three kinds of relationships after experiencing the disease, cancer, and surgery, having maybe felt as if their identity had been lost. We think that this pleasure and appreciation as regaining an identity once almost lost is the central concept of this category.
The sub-category, <What I think was lucky> includes humorous expressions such as regarding the success in quitting smoking as a “reward” for the amputation of the breast(s), and a comment such as that [I thought that I was lucky to have a right to sit in priority seats (in public transport) thanks to the cancer]. These expressions could show the intention the authors try to think of their hardships as BF through different perspectives as well as by their own trying to do the best to survive.
Humor is defined as something people need by nature, and something they cannot live without [
The sub-category,<Pleasure in doing things that are taken for granted> includes cultural, practical, and spiritual aspects rooted in Japanese traditional life-styles, such as “welcoming the new year”, where patients appreciate the day-to-day routines they have lived with before developing cancer. Culture is defined as sense of value and belief that is learned and passed down [
This category describes how patients realize that they have developed based on the cancer experience and how strong they have become overcoming the distress of cancer. As the codes in
Post Traumatic Growth (PTG) is defined as the “experience of development as a person growing out of pain and mental struggles due to a very adverse condition” [
The statement that I sometimes feel the meaning of my existence, thinking that suffering from cancer was not just a waste when I listened to the problems of someone else and the person thanked me implies that patients questioned themselves about the reason for their existence after developing cancer. It is natural that experience of a sense of loss due to the disease and surgery makes a gap between the ideal self before experiencing cancer and actual self now, and there will be gaps and shifts in self-cognition. Endo suggests that such gaps will bring individuals into emotional conflict [
The four sub-categories that generated this category depict process from where patients became aware of death till they determined how they wished to live till death intrudes. All the codes extracted in this study describe situations where patients question themselves as to what they can do and how they want to live to the very last moment considering the time left, facing these obstacles in conjunction with the awareness of cancer, and in the unavoidable fear of death. We interpret ‘Hopes for life’ as BF to strive towards self-realization, powerfully after suffering anguish with fear of death. This BF may be unique in that it is generated when patients are forced to realize that they suffer from a disease that it is difficult to be cured from like a cancer is and that there is only a limited time left before death.
This category can be interpreted as a BF that comes from awareness of social roles which patients can play only because they have experienced breast cancer or because it is a mission the patients feel a need to do.<Discovery of the significance of words of a person who has had a similar experience> included in ‘Gratitude toward others’ expresses that advice and words from persons who have experienced the same affliction with breast cancer was valuable. In case of a ‘Willingness to contribute to others’, it seems that patients who experienced breast cancer desire to use their experience to help others, contributing their experience to persons who are at a loss with the disease like they themselves used to be. It can also be interpreted as a genuine desire to help others to avoid suffering from the hardships they went through.
A study of BF among patients with collagen diseases in Japan has reported a characteristic that was expressed as “I was getting to desire to help others” [
As described above, this study examined each category separately, and found that the authors of the journals felt appreciation for “common practices”, “living”, and “others” and had hopes to make the most of life again, while pondering on themselves and the discontinuity in their lives. The findings also suggest that patients revaluate themselves and find meaning in their existence while developing an appreciation of others. Pain and distress due to diseases generate irregularities in daily lives and routines. Therefore, we think that patients are motivated by trying to find meaning in the adverse event, trying to understand the event intentionally, and alter their world view, and eventually BF is the result. This study cannot determine the process of trying to find meaning in the surveyed journals, because we focus on BF identified as a result of analysis. However, as patients who recognize BF due to diseases do revaluate and reconstruct themselves, it can be inferred that they improve in resilience by positively making efforts to find meaning in their experience.
Journals were written by authors who “wished to write”, and included statements that express the desires of the authors, including the helping of others by publishing their personal experience of breast cancer or by contributing their experience to the wider society. For this reason, extracting BF may have been relatively easy in this study. However, we believe that positive changes through the experience of cancer do occur. As a study has reported that patients will be better adapted to life with cancer five to eight years later if they achieve BF in the year they were diagnosed with breast cancer [
This study analyzed the contents of 22 breast cancer journals written by patients focusing on positive changes, and seven categories were identified. The findings suggest that these seven positive changes were self-revaluation made in the process of living after the patients underwent surgery, by trying to find the meanings of each event in daily life while relating the occurrences to the social context or the context of illness trajectory.
We wish to thank Mr. Takehiko ITO, Ms. Michiko KADOBAYASHI, and Ms. Mikiyo SATO for their cooperation in the analyses. We are deeply grateful to authors of breast cancer journals for valuable messages. This work was supported by MEXT/JSPS KAKENHI (Grant-in-Aid for Scientific Research (C), No. 24593307).
Nakada, M., Shiromaru, M. and Mizutani, S. (2017) Details of Particulars of Benefit Finding through the Experiences of Breast Cancer Patients Analysis on Breast Cancer Journals Written by Patients. Open Journal of Nursing, 7, 98-110. http://dx.doi.org/10.4236/ojn.2017.71009