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CHARACTERISTICS OF PHYSICAL PAINS AND PSYCHOLOGICAL SUFFERING DESCRIBED BY BREAST CANCER PATIENTS IN THEIR JOURNALS CHARACTERISTICS OF PHYSICAL PAINS AND PSYCHOLOGICAL SUFFERING DESCRIBED BY BREAST CANCER PATIENTS IN THEIR JOURNALS Founding Support This work was supported by KAKENHI 24593307 (Project reader, Mizue Shiromaru) Introduction Breast cancer prevalence in Japan is showing an increasing trend. 1) Treatments include invasive mastectomy or lymphadenectomy, as well as non-invasive treatment choices as chemotherapy, radiation therapy, or hormonal therapy. Breast cancer patients suffer from cancer pain as well as side-effects or complications associated with treatment or progression of disease, and are forced to control and (adapt) cope with such pains over a long period of time. However, it is the patients who are going through the physical and psychological sufferings and nurses may not always be able to understand. Patients journals usually provide their illness narratives for nurses. Therefore nurses who care to patients with breast cancer need to establish an effective nursing interventions. This research analyzes journals of breast cancer patients published in Japan with the aim of clarifying the characteristics of physical pains, and discuss appropriate pain management intervention. METHODS Descriptive exploratory qualitative study. We examined the entire text from 22 journals by breast cancer patients published from 2000 to 2011. Descriptions of pains were extracted and listed in chronological order. They were coded and grouped into categories and subcategories according to similarities. Multiple researchers engaged in this process to ensure reliability and appropriateness through discussions. While our subject is the narratives of the journals already out in public, we gave considerations to the protection of copyrights in conducting the study. RESULTS Overview of the journals / diagnosis, medical condition and treatment (Table 1) The age of the authors was between 33 to 70 years old and the average was 50. The average age of surgery was 43.2 years old. Based on the authors description, chemotherapy totaled 77% of the treatment and 50% for both radiation and hormonal therapies. In the analysis, descriptions of pains were grouped into the following seven categories and sub-category of thirty-two. (Table2) Based on the analysis (Table 2), 32 sub categories (listed in ) and 7 categories (listed in ) were generated. 7 categories are illustrated as the following along with progression over time. The narratives are in quotation extracted from the raw data. 1. subjective symptoms before initial treatment included analgesic-resistant persistent pain prior to initial treatment during the untreated period which intensified the physical suffering. 2. pains caused by medical examinations raised as I screamed at the pain from palpation indicated the patients experience in dual sufferings of cancer pain and pains associated with examinations. 3. excruciating pains and numbness experienced immediately after a surgery , we found intolerable pain and numbness in the breast; abnormal sensations such as an electrical sensation caused by the operative procedures. On top of this, even taking the analgesics, stubborn, intolerable severe pain and numbness in the arm was occurring. There also was a physical pain associated with catheterization/drainage procedures indicated as I screamed every time when the doctor or nurse pushes out the accumulated drains in the wound from the body ; I can t stand it. 4. Pains and numbness that continued after three months post-surgery indicated as I have continuing pain ( for more than 2 years ), I tried to reduce my pain on my own asking for a spiritual person s help but did not work. So, I went to a Psychosomatic Medicine doctor., my upper arms are big and swollen ( for more than 2 years ) and etc., the physical sufferings due to unimproved persistent pain and abnormality in sensations post-surgery were occurring year after year as pain due to lymphatic edema and discomfort from a swelling sensation for more than 2 years or inability to freely move the arm due to pain . 5. Disappointment by visible changes to bodies raised the pains that addressed the loss of femininity as unexpected facial changes (swelling, discoloration, hollow cheeks, pale skin, etc.) , disappointment at intolerable changes in skin color and the color/shape of nails or level difference between both breasts; confusion from a breast shape different from the expectation . 6. Side effects and pains accompanying non-invasive treatments indicated that the patients were in an extreme state, strength taken away thoroughly, reduced energy, and instability of the body raised as anticancer drug is like a roller coaster ride everyday due to the side effects of chemotherapy or radiation therapy or my body and mind is falling apart. as an unthinkable collapsing sensation for the body . Unbearable nausea and malaise associated with side effects of chemotherapy described as my limbs are numb and have a strange sensation ( fear of sprains ), so I won t be able to wear heels anymore. suggested the physical suffering characteristics that may disable them from having everyday life. 7. Body function and ADL decline due to pains from metastasis illustrated the activity restriction due to metastatic pain and difficulty in vocalization and communication due to hoarseness raised as I was not able to walk and speak out in a clear voice. I felt as both of my important wings to express who I am were torn. Also, the loss of strength due to constant coughing have limited the scope of activities as physical functions weakened and declined the patients self-esteem depriving their independence. It is clear that breast cancer patients suffer a wide range of physical pains throughout all stages of the development of the disease. CONCLUSIONS We found that excruciating pain and numbness primarily caused prolonged physical sufferings starting immediately after surgery. Side effects and pains accompanying chemotherapy, radiation therapy and hormone therapy caused fatigue and nausea, and extreme suffering that her body and mind is falling apart. In addition, the breast cancer patients suffered from lower self-esteem as a woman because of mastectomy as well as hair loss, facial spots and skin/nail discoloration. These indicate that we need to anticipate the total pain and develop approaches from an early stage focusing on the physical pain relief management to help reduce persistent pain among breast cancer patients. Furthermore, pain or abnormality in sensations that continues year after year is an intractable chronic pain, and for catastrophizing cases observed prior to surgery 2), there is a need to consider active nursing interventions in pain relief management such as providing relevant pain relief information or psychological interventions prior to surgery. Mikiyo Sato RN, MA Department of Nursing, School of Health Sciences, Tokai University, Isehara,Japan Michiko Kadobayashi, PhD Faculty of Integrated Arts and Social Sciences, Japan Women's University, Tokyo, Japan Mizue Shiromaru RN, PhD School of Health Sciences, Sapporo Medical University, Sapporo, Japan Satomi Mizutani, RN, MA Faculty of Health Care and Nursing, Juntendo University, Chiba, Japan Mari Honma, MD, PhD Department of Rehabilitation, Sapporo Medical University, Sapporo, Japan Tomoe Kodaira, RN, PhD School of Nursing, Seirei Christopher University, Shizuoka, Japan Migiwa Nakada, RN, MA School of Health Sciences, Sapporo Medical University, Sapporo, Japan Takehiko Ito, PhD Department of Psychology and Education, Wako University, Tokyo Japan Contuct Mikiyo Sato E-mail: mikiyo@is.icc.u-tokai.ac.jp Department of Nursing, School of Health Sciences, Tokai Universitymikiyo@is.icc.u-tokai.ac.jp Address: 143 Shimokasuya, Isehara, Kanagawa, Japan ZipCode:259-1193 Reference 1)Matsuda A, Matsuda T, Shibata A, Katanoda K, Sobue T, Nishimoto H and The Japan Cancer Surveillance Research Group. Cancer Incidence and Incidence Rates in Japan in 2007: A Study of 21 Population-based Cancer Registries for the Monitoring of Cancer Incidence In Japan (MCIJ) Project. Japanese Journal of Clinical Oncology, 43(3): 328-336, 2013 2) Phillip J Quartana, Claudia M Campbell, Robert R Edwards: Pain catastrophizing: a critical review, Expert Rev Neurother. 2009 May ; 9(5): 745758. doi:10.1586/ERN.09.34.