I was a medical social worker in a hospital which entails assisting and counseling patients and their families regarding adjustment to illness, assisting patients and their families to navigate through the medical, the insurance and the social service systems (if necessary), and to assist with safe discharge plans for after care. I predominately worked in the cardiac care step down unit, but we tended to rotate as some units are more emotionally demanding than others. It just so happened that when I discovered a mass in my right breast, I was working on the oncology unit. On this unit you don’t get to see too many success stories. Usually by the time someone is spending long periods of time in this unit and a social worker is involved, the battle has been lost. I and my colleagues counseled many young men and women just beginning their adult lives, many with husbands or wives bringing toddlers to visit. I saw so many beautiful young people leave this world with as much dignity, as possible, and many times with a sense of peace and acceptance. When I found my lump I was 58 years old, so I never thought to ask “why me?” I had seen too much and under those circumstances, “why not me?” I had two grown children, three grandsons, and had been divorced for about seven years. I was engaged to be married at the time of my diagnosis in October of 2004 and the wedding was planned for December.
I had been for my annual gynecological checkup in June which of course, included a breast exam. Nothing was detected. But by October, four months later, I had a three centimeter mass on the underside of my right breast. On November 4th, I was wheeled into the operating room following a sentinel node biopsy (inserting a needle that injects a blue dye near the tumor. The blue dye follows the same path to the lymph nodes as the cancer cells would take. This gives the surgeon a “path” to follow to assess lymph node involvement.) My surgeon practiced breast conservation attempting to remove only the amount of tissue around the mass that he thought was necessary. The pathology report during surgery showed no lymph node involvement and this was a relief following the operation. However, the final pathology report a week or so later showed that the margin of healthy tissue in the breast was not wide enough, so on November 18 I was back in the hospital for additional tissue removal and the result was a partial mastectomy. My surgeon attempted to assure me of an excellent prognosis. The final pathology reports revealed that I had a Stage II Invasive Ductal Carcinoma which is the case in approximately 80% of breast cancer patients. Additional news in the pathology report showed that my cancer was a particularly aggressive type known as HER2+, so although there was no lymph node involvement, I would require chemotherapy and radiation treatment. Approximately 1 in 4 patients with breast cancer has HER2+ breast cancer. HER2+ breast cancer cells have more HER2 receptors (a particular protein found on the surface of cells) than normal breast cells. Having too many HER2 receptors may make the cancer cells grow and divide faster, creating more HER2 cancer cells. Because it grows and spreads quickly it is considered an aggressive cancer.
There is nothing that prepares you for that moment in time when you are told that you have cancer. Many psychological studies have shown that the moment of diagnosis is the most traumatic moment of the cancer experience. Baum and Posluszny (2001) explain “that when a patient first learns about their cancer diagnosis a challenge is presented to their beliefs about the world and their sense of safety and it may cause patients to reconsider life priorities, expectations and aspirations.” I have found this to be true, but I have also found that in addition to the initial diagnosis, there have been many traumatic moments.
Most people are familiar with a disorder known as Post Traumatic Stress Disorder (PTSD) in terms of war veterans,victims of mass violence,or possibly regarding survivors of incest or stranger rape. The Diagnostic and Statistical Manual (American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders text revision. Washington D C:American psychiatric Association;2000) DSM for short, is used by the mental health field for diagnostic purposes, as its name implies. It is revised periodically with knowledge advancements in the field. Post Traumatic Stress Disorder is one of the diagnostic categories in the manual. The earlier manuals listed trauma in their criterion as caused by a stressor “outside the range of normal human experience,” such as would occur in a war, situation of random and mass violence, or in a situation of incest. The DSM 4th edition changed the criteria by omitting the description of the stressor as “out of the range of normal human experience” to require that the individual’s experience in response to a stressor must include intense fear, helplessness or horror. The definition now includes the experience of a life threatening disease.
I have reviewed professional journal articles studying whether breast cancer can cause PTSD. I have found that most studies find the percentage of cancer survivors with PTSD to be statistically low, unless these cancer survivors had also experienced earlier traumatic events in their life. It is not my purpose to do a study or argue other study’s conclusions for or against. My purpose is personal, to describe what I felt and still feel at times in the hope that sharing this information might provide some new knowledge and insights that could create a better understanding of what breast cancer survivors are experiencing. I don’t believe that I have Post Traumatic Stress Disorder, but I did and still do, to some degree, experience some of the symptoms included in the criteria. I believe that many of the symptoms are experienced to some degree of discomfort by most people experiencing a life-threatening illness. The DSM and the diagnosis of PTSD represent the most severe end of the spectrum of symptoms. In order to be considered a diagnosis of Post Traumatic Stress Disorder the disturbance must cause clinically significant distress or impairment in social, occupational, or other important areas of functioning and must last for more than one month. But, many of the symptoms are a normal response to trauma. The symptoms do not have to cause clinically significant distress in our lives to cause discomfort or confusion. Not understanding our emotions can also have the potential to affect response for the need for ongoing self care. Once I recognized what I was experiencing, I felt less discomfort. Knowing the nature or origin of a problem is the first step in helping that problem. I will “break down” the criteria into its separate clusters of symptoms relating my personal experience with the criteria. If you wish to view the full criteria for PTSD in its entirety, see the indicated post.
A) “The individual has to be exposed to an event that includes the personal experience of actual or threatened death, serious injury or the integrity of self or others; and, the response involves intense fear, helplessness or horror.”
People diagnosed with a life-threatening illness, in my case breast cancer, experience the threat of death, intense fear, and a sense of helplessness. The injury to our body is not caused by an act of violence or an accident, but by the necessary surgery and treatment to save one’s life. Having one’s body changed by the loss of a breast or breasts is a disfigurement to our bodies, the body that we’ve known to be part of our self and our identity all of our lives. The integrity of self is affected; my sense of self was one of health, safety, and soundness. Following the diagnosis, that illusion was gone. One moment: healthy person in charge of one’s life. Next moment: a life-threatening illness where I am in charge of choosing my health care providers, but then must turn control over to them. There is also the aspect of an uncertain future. One study ( Medscape 2004) found “ the difference between a medical related stressor and a more conventional stressor is a matter of time. Conventional stressors are often acute events. However, being diagnosed with a life-threatening illness also contains a future oriented aspect representing fears and worries about treatment, survival, recurrence, stigma, and the persistence of life-threat and new dangers yet to come.”
B) “The traumatic event is persistently re-experienced in one or more of the following ways (a) e.g. images, thoughts or perceptions (b) distressing nightmares, (c) acting or feeling as if the event were reoccurring (e.g. a sense of reliving, illusions, dissociative flashbacks episodes), (d) intense psychological distress at exposure to internal and external cues that resemble an aspect of the event, physiological reactivity on exposure to internal cues and external cues that resemble an aspect of the event”.
With a life threatening illness, the traumatic event is persistently re-experienced. I experienced anxiety filled dreams, often not appearing to be directly related to the cancer diagnosis, but having varying themes of helplessness. We literally re-experience as we must continue to have follow up doctor visits and diagnostic tests. Awaiting results from pet/cat scans, mammograms, blood work, etc. is a bone chilling experience that, of course, causes psychological distress. Waiting for the results places you back in time waiting for your initial diagnosis. Images, thoughts, perceptions of the original diagnosis are all present. It is very difficult not to have a sense of reliving the experience. Physiological reactivity on exposure to internal or external cues that resemble an aspect of the event while being examined or tested can also be present. For example prior to a mammogram, I generally experience rapid heartbeat and sweating palms. Stress hormones norepinephrine, epinephrine and cortisol are released causing increased blood sugar, increased gastric acid and immune system suppression. Its purpose in our bodies was meant for survival, flight or fight response. But, obviously in our context it is uncomfortable and unhealthy.
C) “Persistent avoidance of stimuli associated with the trauma and numbing of general responsiveness. This must be indicated by at least three of the following symptoms: (a) efforts to avoid thoughts, feelings, or conversations associated with the event, (b) efforts to avoid activities, places, or people that arouse recollections of the event, (c) inability to recall an important aspect of the trauma, (d) markedly diminished interest or participation in significant activities,( e) feeling detachment or estrangement from others, (f) restricted range of affect, (g) a sense of a foreshortened future.”
I think that symptoms from Criteria C have the potential to be the most dangerous. Efforts to avoid thoughts, feelings, or conversations associated with the event, efforts to avoid activities, places, or people that arouse recollections of the event can all cause a lack of on-going medical follow up. Fears and physiological reactions can easily cause us to avoid doctors and tests. Healthology.com/breast cancer/article 3774.htm states that “many survivors are not seeking annual mammograms.” The article states that “denial can play a part in this” It is the overwhelming fear of reoccurrence that causes the mind to “escape” into denial mode(psychologically it is called a defense mechanism.) In denial the mind avoids any triggers related to our cancer diagnosis. If we allow these fears regarding receiving a positive mammogram result to keep us from caring for ourselves, this is the biggest danger of all. To prefer not knowing and to assume that we are safe through the accompanying use of denial is a major threat to our health. We must recognize the fear, “name it, own it” and take away some of its power.
Feeling detachment or estrangement from others and having a sense of a “foreshortened future” was a problem for me. However, once recognized as a “normal” response to a life-threatening trauma I felt major relief. At first I thought that my sense of a foreshortened future was a type of premonition. I had difficulty making any long term plans and felt detached and estranged from all the people around me that had no difficulty with making future plans. However, when I realized that what I was feeling was a normal response to trauma, it lost its power to cause me heightened anxiety. I came to the realization that what was normal for people that had not experienced a life-threatening trauma, was not going to be as easy for me. I had a “new normal.”
D) ” Persistent symptoms of increased arousal, as indicated by at least two of the following: (a)difficulty falling or staying asleep, (b) irritability or outbursts of anger, (c) difficulty concentrating, (d) hypervigilance, (e) exaggerated startle response.”
My days were very busy. I was working full-time and managing all other aspects of daily life which kept my mind absorbed. But nighttime when preparing for sleep became a problem. Then my mind wouldn’t “close down.” Those nagging memories and fears would creep into my mind and sleep would become elusive. This becomes better with time, but be aware that experiencing sleep problems following trauma is “normal.”
I normally have an easy going personality, but I had an experience with a sales person that was very out of character for me and enlightened me regarding my “buried ” anger. I had purchased some lovely nightgowns for my honeymoon, but following my surgery they were no longer appropriate for me. I was returning them to the store to exchange for some more appropriate, but hopefully still attractive nightgowns. Evidently, I was not in touch with the anger I was harboring regarding the whole situation. Before I knew it, I was taking it out on the poor sales person who was a young woman. She asked me what the problem was with the nightgowns I was returning. I could have been tactful, but I blurted out that I had had breast cancer surgery and these particular nightgowns were no longer appropriate. I can still see the expression on that poor girl’s face. She had no idea what to say and I had been cruel to put her in that position. I think it was at that point that I realized that I was carrying a lot of anger along with many other emotions. I also found that some reading material angered me when I felt that well-meaning, but ill informed doctors made upsetting statements. I can’t site the article, because I don’t have the reference, but the author stated that maybe hypervigilance was a good thing because it caused cancer survivors to be more aware of their bodies and to seek help quickly. I wanted to scream NO, NO, NO! Hyper is not good. It is anxiety provoking and worrisome. Vigilance is GOOD. We should all be vigilant regarding changes in our bodies, survivors included.
I have selected the symptoms from the criteria that I felt affected me the most. You may see yourself in the same criteria or others, but be aware that many of these responses are normal. If the time comes that the disturbances cause clinically significant distress or impairment in important areas of your functioning be aware that it is time for professional assistance.