A sudden departure
Breast cancer is a life changing event; one you cannot anticipate or plan for and one in which you have no choice. How we deal with living with it differs from one person to another—this is my personal story.
My journey began in 1991 when I was an apparently healthy mother with two children, just living a normal life. It was a particularly fulfilling time for me. I had an interesting job as a biology teacher and was fit and well with a happy family life. Then, out of the blue came a diagnosis of breast cancer; something that has changed the direction and focus of my life, both positively and negatively.
My first reactions were shock, surprise, and terrible fear—would I live to see my children grow up? These fears clouded my whole being at first. How would we tell the children and the rest of the family? Suddenly my whole world changed in front of my eyes.
I had a history of benign breast disease, but there seemed to be no particular concern about that. Then I found a new lump that did concern me, as it felt different from the others. I asked if I could have a biopsy, just to put my mind at rest. This insidious lump turned out to be an invasive ductal carcinoma, grade 2, with positive lymph nodes, so after a lumpectomy and axillary sampling I immediately began treatment—six months of chemotherapy, tamoxifen, and then radiotherapy.
A roller coaster ride
The cancer patient's journey is a true roller coaster. Once you step on there is no stopping, no let up, no days off. I started my chemotherapy unprepared for what would happen to my body. When I was diagnosed, little information or support existed—no clinical nurse specialists to guide me along the journey, little accessible information, no internet, no support group. I desperately needed information. Perhaps it was the biologist in me, but I needed to know what these cancer cells were doing to my body. I absorbed any information I could find on breast cancer like a sponge. I was fortunate to have very good doctors who answered lots of my questions, but no one could give me any guarantees. Life became very precious; it came sharply into focus. I heard the leaves rustle again and the birds sing. I listened to life for a change and I wanted it to continue.
Understanding the map
Knowing everything I could about my condition helped me cope in the early stages. Since then it has helped me to live successfully with cancer. I found that if I had as much knowledge as possible, I could regain some control over my life and direct my thinking more positively. This was essential during chemotherapy, as the treatment for breast cancer wages a complete war on your body and totally undermines your femininity. Firstly, you have disfiguring breast surgery, then your hair falls out during chemotherapy, not to mention the “instant” menopause you experience due to tamoxifen and chemotherapy—not a recipe for feeling good. I felt that I had changed from a “normal,” reasonably attractive woman in her early 40s to an old woman overnight, without hair or hormones. However, with the help of a stylish wig, very like my own hair, I tried to pretend I was the person I had been a few months before. I continued to teach throughout my chemotherapy, albeit on a reduced timetable, and I think this helped me to remain positive. I particularly wanted to avoid making my children over anxious about me, and I certainly did not want to feel like a “cancer patient.” Teaching on a daily basis and dealing with pupils' problems took my mind off myself and how I felt.
Things that were done well and not so well
Things that were done well
Surgery—lumpectomy and later mastectomy with immediate reconstruction. These were the least disfiguring options and this has helped me psychologically
Good follow-up and after care from oncologists and surgeons. The reassurance I received at reviews and the investigations carried out when needed have helped me deal positively with breast cancer
Excellent support from breast care nurses and an understanding and caring general practitioner have helped me immensely throughout my journey
Things that were done less well
The original diagnosis was delayed because the tumour was thought to be associated with previous benign breast disease
Basic information and support were lacking during treatment in 1991, particularly while I was undergoing chemotherapy
Radiotherapy—I spent long periods in the waiting room alongside terminally ill patients. I found this upsetting and think that newly diagnosed patients should be treated separately
Comment from my daughter, Dr Sarah Brooks
I was 13 years old when my mother's breast cancer story began; I am now 28 and her journey continues. Her experiences have highlighted to me that a diagnosis of cancer is only the beginning of a patient's journey. This was brought home to us last year when she had a new diagnosis of breast cancer and needed more surgery. My mother's experiences have helped me to understand the medical and emotional needs of individual patients in my own work as a doctor. In my mother's case, she needed to have all the facts clearly explained and to have access to good information sources and support.
I understand that other people might prefer not to know every detail of what “could happen.” I have realised the need for minimum delay in giving results, as a prolonged waiting period can cause great anxiety. Factors that I think have made a difference through difficult times include professionals who gave realistic advice without false assurance; accessible breast care nurses who were a great source of information and support; scientists who gave her hope for the future; and my mother's positive acceptance of living with cancer.
Difficult terrain
However, psychologically, my lowest point was when I had to go to London for radiotherapy, which took about three months, as I had to have surgery for another tumour as well. We live on the Isle of Man, so this meant being away from my family and my job. Suddenly, I was a cancer patient—I could no longer pretend. Fortunately, I stayed with my sister and her family in London, and they were immensely supportive. I missed my family and ordinary life, and I found going for radiotherapy daily and waiting in a dismal room very taxing and demoralising. The walls of the waiting room were covered in peaceful scenes, which were meant to help patients relax. However, I found them disturbing; surely I was not at the end of the road yet. I did not feel the need for peaceful scenes everywhere. Patients who were terminally ill were also waiting beside me—would I become like them? I found it very distressing. A Macmillan nurse helped me discuss my fears and I realised then the enormous value of such support.
Emotional support should be accessible to all patients, as psychological wellbeing is important when so much has to be faced. Often the psychological aspect of breast cancer is not considered a high priority by health professionals. Although this is understandable when their focus is on clinical issues, it should be an integral part of the overall care. The role of clinical nurse specialists is crucial in this respect, and the development of cancer information and support centres in hospitals has provided much needed support and information for patients and carers.
Additional resources for patients
Breakthrough Breast Cancer (www.breakthrough.org)—the leading British charity committed to fighting breast cancer through research and education
Macmillan Cancer Relief (www.macmillan.org.uk)—British charity best known for providing specialist health care, information, and practical and emotional support for people with all forms of cancer. Provides “cancer voices” training for advocates
Breast Cancer Care (www.breastcancercare.org.uk)—British charity providing support and information
Europa Donna (www.cancereurope.org/europadonna)—website with information on patient advocacy within Europe
American Cancer Society (www.cancer.org/apicem)—new web portal with education material on cancer in Asia and the Pacific Islands
Breast cancer information (www.breastcancer.org)—American website with medical information about breast cancer
Breast Cancer Network Australia (www.bcna.org.au)—website that aims to empower, inform, represent, and link together Australians personally affected by breast cancer
Travelling alone
After radiotherapy and 10 months of treatment I suddenly felt I was on my own. I did not feel like celebrating when I left the hospital after the last radiotherapy session. I was very scared. This is a point at which many patients need good psychological support. Somehow you feel “safe” when you are undergoing treatment and cushioned somewhat along the conveyor belt of the journey. Now what?
As soon as I returned home, I went back to teaching, as I wanted to return to normality as soon as possible. That may not have been wise, but psychologically it was the right thing for me. Within a few months I realised that I needed to get involved in some way with breast cancer, which had now become part of my life. Although it was originally an unwelcome visitor, my involvement with breast cancer has proved to be an enriching and life enhancing experience.
Joining the explorers
In 1992 a new charity, Breakthrough Breast Cancer, had started to raise funds for a proposed breast cancer research centre. This appealed to me as I saw research as a way to provide me with hope for the future. I signed up as a Breakthrough “£1000 challenger” and began to raise funds for the charity. That was the start. Breakthrough now has a world class research centre at the Institute of Cancer Research, with over 100 scientists working towards an answer for this devastating disease. The Isle of Man Breakthrough Group, which was formed in 1993 and of which I am chairman, has raised over £400 000 towards this research. Breakthrough has become an important part of my life in the past 13 years, and through my involvement with it I have met many wonderful people—inspirational scientists, dedicated clinicians, supportive Breakthrough staff, and other patients. Many of these people—who I would not have met if I had not had breast cancer—are now good friends. I have gained support, friendship, and knowledge from them all.
I have also developed what could be termed a new breast cancer “career,” through my work as a breast cancer patient representative. This now occupies much of my time, and it is something to which I feel I can contribute constructively. Within Breakthrough Breast Cancer, I am a participant representative on the scientific advisory committee for the Breakthrough generations study (a large and comprehensive study of the causes of breast cancer), and I am a member of Breakthrough's Campaign and Advocacy Network Steering Group. These roles enable me to ensure that the patient's view is considered, both in research projects and in Breakthrough's national campaigns.
I became a breast cancer “user” as part of the Isle of Man's strategic development on cancer in 2002. I feel that it is a progressive initiative for patients to work in partnership with health professionals, and I felt privileged to be asked to be the patient representative on the strategic multidisciplinary team for breast cancer at Noble's Hospital, Douglas. Since then, I have tried to be effective in this role by participating in training days and conferences for patient advocates both in the UK and Europe. It is important to be objective, well informed, and diplomatic. I am also one of two user representatives on the Isle of Man cancer taskforce, so I am able to bring patient issues to this decision making body. Both the development of a cancer user forum and the establishment of a cancer information and support centre in the hospital have been two challenging projects in which I have been heavily involved over the past few years. The information and support centre is a particular passion of mine, since I first felt the lack of information and support when I started my cancer journey.
Sharing the journey
I believe that education on breast awareness has an important part to play in the early detection of breast cancer, so I have devised presentations that I give to local schools (mainly to sixth form girls) on breast awareness and breast cancer. The students are very receptive, and I hope that the information and ensuing discussions will help the girls be more “breast aware” in later life.
The message that early detection saves lives is important to get across to all ages. General practitioners should perhaps reinforce this message and encourage women over 50 to attend routine breast screening. Some women are still reluctant to attend screening or to check their breasts for changes.
Unfortunately, I had another brush with breast cancer last year, when a new tumour was found in the same breast, 14 years after the first. This proves that breast cancer is always lurking in the shadows, ready to catch you unawares. This time, however, it was diagnosed immediately—clear evidence of a small tumour on a mammogram. Treatment options were clear—either mastectomy or mastectomy with immediate reconstruction. I found the decision difficult to make, but I had the support and advice of a breast care nurse and the surgeon. I opted for mastectomy with immediate reconstruction, as I felt that psychologically this would be better for me. I had computed tomography and bone scans done before surgery, to determine whether the tumour was localised or not; these tests were all done within a week, making this anxious waiting period as short as possible. The treatment I received was excellent, and I had much more support and information provided than in 1991. Because of better awareness on my part and prompt attention from the clinicians, this tumour was diagnosed earlier (grade 1) and required no further treatment, other than drugs.
However, the fear of metastasis is always present in the background. It is part of living with cancer, and since I started to write this article I have had another scare when a “suspicious area” on my brain was found on a computed tomography scan. Again my life was put on hold while I had more scans, including magnetic resonance imaging, which showed that the area was a vascular malformation. Throughout the two weeks of intense anxiety, I had immense support from my breast care nurse, and importantly I received the results quickly. My recent experiences highlight the improvements in psychological support and the benefits of a multidisciplinary approach to the care and treatment of patients with breast cancer.
I am just grateful to be alive and to have been able to see my children grow up. For that alone I feel very privileged, and for as long as possible I will work with others in the field of breast cancer to find an answer to this devastating disease that affects so many women. I offer my heartfelt thanks for helping me live with cancer to the scientists at the Breakthrough Breast Cancer Research Centre who have given me hope for the future, the excellent health professionals who have helped me in my treatment, and my wonderful family and friends who have given me their support.
Competing interests: None declared.