“When I was not only called back for more mammogram films, but scheduled for an ultrasound, my anxiety began to skyrocket.”
Mary Amundsen
Breast cancer survivor
Mary Amundsen, right, with her daughter and her husband. ©MFMER
A cancer diagnosis can be a lightning bolt. Once the word cancer is spoken, life stops — or seems to. Normal routines unravel. Emotions are laid bare. Concentration is lost. Things that once were so important no longer are.
With the lightning comes the rain — a pelting of information, statistics, questions and tests. At a time when all you may seek is warmth and shelter, you can’t get out of the storm. Appointments need to be scheduled. Decisions need to be made. Steps need to be taken.
Sometimes, it’s difficult to know where to begin or which way to turn for guidance. This book was written to provide reliable and easy-to-comprehend information to help you better understand your cancer, make informed decisions regarding your care, and cope with the emotional and physical effects of cancer treatment.
The focus of this book is on the most common and serious cancer to affect women — breast cancer. Each year in the United States, more than 200,000 women are told they have breast cancer. The good news is, deaths from the disease are declining, due in large part to ongoing research and continued advances in diagnosis and treatment. You’ll also learn key facts about two other cancers that affect women, ovarian and uterine cancer. These cancers are included because they’re more common in breast cancer survivors.
The book is divided into three sections. Part 1 provides an overview of cancer in general: What it is, how it develops, and how it spreads. Part 2 focuses mainly on breast cancer. The chapters in this section provide a comprehensive discussion of all aspects of the disease from risk and prevention to the latest in diagnosis and treatment. Part 3 discusses strategies for dealing with the emotional, social, spiritual and physical challenges that accompany cancer treatment and survival.
The book also contains personal stories from women who’ve been diagnosed with cancer. They talk about the decisions they faced, the choices they made and their lives today.
We begin with Mary’s story. Mary Amundsen is a registered nurse and licensed psychologist. Not only has Mary confronted — and weathered — cancer herself, she has witnessed firsthand the fears, concerns and courage of many women facing the same struggle. Mary offers her story and shares her advice to reassure you that you aren’t alone in your journey.
Source: American Cancer Society. Cancer Facts & Figures 2012. Atlanta, Ga.: American Cancer Society, Inc.
Mary’s Story
My annual mammogram. I didn’t feel particularly anxious, although in the past I had been called back for additional films, which had reassured me that the radiologists were very precise. Because I was over age 50, I was at increased risk of breast cancer, even though I didn’t have a family history of it. No one in my family had had breast cancer, but our daughter had been treated for ovarian cancer. So, when I was not only called back for more mammogram films, but scheduled for an ultrasound, my anxiety began to skyrocket.
Summoning my husband, to give me support and to provide an extra listening ear, we met with the radiologist. He explained the finding of clustered microcalcifications on my mammogram and suggested that I could get another mammogram in six months. No one, not even I, could feel a lump, and the mammogram films didn’t show a suspicious mass. But did I want to wait until a lump developed? The questions, ambivalence and fear were just beginning. We asked for a second opinion. The second radiologist explained that the microcalcifications had been present on previous films but now were clustered, suggestive of cancer. He recommended a biopsy, although I still had the choice of waiting six months for another mammogram. That was decision point No. 1.
At the time I was faced with this decision, I thought of my years as a nurse and of my leadership of a breast cancer support group. The stories of others waiting too long for a biopsy and not having enough information to make an informed decision gave me a sense of urgency. It suddenly felt like my life was spinning out of control once again. It had been only six years since our daughter, at age 30, was diagnosed with ovarian cancer. At that time, I had desperately wished it were me instead of her. Four years after that, my husband had gone through extensive surgery and radiation for a sinus cancer. I felt our family had paid its dues to the “Big C,” and I was angry that we might be facing this ordeal again.
The radiologist tried to assure us that most breast biopsies are benign, but the experience with our daughter and my husband, whose cancer shocked even the surgeon, made us very uneasy. The biopsy wasn’t an emergency requiring an overnight decision, so I had some time to gather information and talk with supportive people, but by now I knew I didn’t want to wait six months for another mammogram.
A possible cancer diagnosis seems to bring up every emotion and bad outcome you’ve ever heard. I knew literally hundreds of women who had had breast cancer and were still alive, but my mind jumped to those who had died of it.
An even stronger reaction was the grief and guilt that I felt in putting our family through this again. Our daughter was doing very well after her two surgeries and her chemotherapy treatment, and we were anxiously waiting out each checkup for my husband. My reactions felt familiar, and although I knew I could get through this, my heart was heavy.
Once I made the decision to have the biopsy sooner rather than later, I was faced with another decision point.
If the biopsy did show cancer, what type of surgery would I want, if I had a choice? Did I want the surgeon to proceed with a mastectomy, if indicated, and what about reconstruction? By this time I had talked with two radiologists, a surgeon and my personal physician. What I found, and now tell others, is you must be your own advocate and gather as much information as you need to be comfortable with your decisions.
Although it may feel like a burden to be involved in the decision-making process, we’re fortunate that there are choices. You likely will be given treatment options that will require you to make decisions. As much as you might wish for the old days when a doctor made all of the decisions, times have changed.
If you’re feeling overwhelmed by the information you receive from your doctors regarding treatment for your cancer, take some time to process what you’ve learned and don’t be afraid to ask questions.
My surgeon was very patient with all of my questions and my desire to be involved in the decision making. Even though I preferred to keep my breast, I wasn’t going to put my future at risk. We discussed the research findings of lumpectomy and radiation versus mastectomy. This information conflicted with my gut reaction to have my breast removed and be done with it.
I was very lucky. My cancer was discovered early, which increased my chances of a good outcome. Surgery showed a small, slightly invasive cancer, and the surgeon removed only a small part of the breast. A lymph node dissection was negative, so only radiation, not chemotherapy, was recommended as part of my treatment.
After I was finished with radiation, I wondered what was next. I wasn’t comfortable doing nothing, so I contacted an oncologist to discuss the possibility of using tamoxifen or a similar drug. I knew others who were taking these types of medications, and I felt like I needed to pursue every avenue. The oncologist, after reviewing my records, didn’t recommend any additional treatment, because my prognosis was extremely favorable without it. At this point, I needed to trust the opinion of my doctor but also keep myself informed as new research results were published.
The decision of whether to have additional treatment once your primary treatment is complete is another major decision point for many women. Learning more about possible therapies is essential to prepare yourself for this phase of your recovery. If your doctor recommends additional treatment, knowing why he or she is recommending that particular treatment can help to alleviate the anxiety. During this time, your relationship with your medical team needs to be one of support, understanding and patience by all individuals involved. Your physical recovery may be progressing, but the emotional aspects of cancer now are beginning to surface. The changes cancer has brought to your family and your life are now being realized.
When cancer involves the reproductive and sexual organs, it strikes at the very core of a woman’s identity. Your physical appearance and physiology may be very abruptly and significantly altered. The gradual changes that come with adolescence and menopause allow a woman to adjust psychologically over a period of time. Cancer, however, often brings sudden changes. And not only are they sudden, they’re unwanted and uncomfortable. Your feelings of femininity may be challenged, and you may feel insecure about your most intimate relationships. Future dreams and plans may never be realized in ways you had hoped.
It’s a time of grief and loss and a time of coping, often in new ways. Cancer can bring out a creativity never realized. A friend of mine started to write a poem about her breasts and what they had meant to her. The poem became many poems as her feelings poured out onto the paper. Other women have used art and sculpture to evoke their deepest emotions, and music to ease some of the difficult times during sleepless nights or chemotherapy treatments. My daughter played meditation tapes during her chemotherapy treatments. Quilting or fiber art can express our darkest times and our birth of hope. To view one of these artistic creations is to know the deeper connection with others who have walked this path of cancer.
Keeping a journal of your experience is a way to express fears and feelings that are difficult to speak aloud. Humor can provide some relief to the seriousness we live with every day. I keep a folder of cartoons for those times. Just the physical act of a smile changes the way I feel, for a short time at least. You can choose how you deal with this crisis in your life.
Is cancer a life-changing event? You may read about those who radically altered their lives after a cancer diagnosis and you may wonder if you need to think about major changes. Cancer does change your life in many ways as you learn a new language (medical), meet new people (the medical team), fill up your calendar (with appointments) and, perhaps, see a different body in the mirror. Many women in my support group have expressed feeling a sense of urgency to do things now, instead of later. As a cancer survivor, you become very tuned in to news reports of cancer research, new treatments and statistics of survival. Every ache and pain is viewed with new concern, and checkups are approached with anxiety. So, yes, cancer is a life-changing event. But then, any major life-threatening diagnosis will change a person’s life. You are face to face with your vulnerability. The illusion of an open-ended future has been shattered and reality can be harsh.
One of the biggest fears, of course, is that of recurrence — that the treatment didn’t get rid of everything. It’s a fear all people who’ve had cancer live with and don’t want to think about. However, some preparation can help you cope if that day comes. Think about what information you would want to know, who would be most helpful to you and how you coped with your initial diagnosis. The courage and strength of those I have known with cancer is a continuous source of hope and inspiration for me during anxious times. If others can get through it with grace, then so can I.
In addition to my daughter, husband and me, cancer has been diagnosed in my brother (melanoma) and in my daughter-in-law (bladder). We are now all considered cancer-free, or in remission, although we know that at any time our status could change.
What factors made a difference in our outcomes? There was no doubt some luck and other factors beyond our control that contributed to our successful treatments. But we also did some things that probably made a difference. I had a routine mammogram, which found the cancer at a very early stage. My daughter had some unusual abdominal discomfort and had a checkup. My husband pursued the increasing pain in his sinus area, which he considered unusual. I noticed a mole on my brother, and I urged him to see a dermatologist. Our daughter-in-law sought attention for intermittent episodes of urinary bleeding. In other words, we were aware of body changes, and we were persistent in having those changes evaluated. When you feel that something is physically wrong in your body, you do have to be assertive and be an advocate for yourself. No one else can truly know how you feel.
Many people made a difference in the quality of our lives during those months and years, for those of us with cancer and for our family as a whole. Cancer is a family affair and everyone needs support and understanding. It’s not a journey to travel alone. A burden shared is easier to carry.
No doubt you’ve experienced other difficult times in your life, and you’ve managed to get through them. Think back now to those times and what you did that was the most helpful. Draw on those strengths now. Educate yourself, select a skilled medical team, find support and proceed with hope.
MYTH vs. FACT
Myth: If we can travel in outer space and put people on the moon, we should have a cure for cancer by now.
Fact: Cancer is a large group of diseases, and each type of cancer may be associated with many different factors. Researchers are still learning about what triggers a cell to become cancerous and why some people with cancer do better than others. In addition, cancer is a moving target. Cancer cells continue to mutate and change during the course of the disease. This can cause cancer cells to no longer respond to medications or radiation treatments that initially worked well when the disease was first diagnosed.
Finding a “cure for cancer” is, in fact, proving to be much more complex than mastering the engineering and physics required for spaceflight.