1. Leigh, Susan BSN, RN

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My journey into the world of cancer began in 1971, a few months before my own diagnosis. Shortly after returning from a tour of duty in Vietnam, I received a letter from one of my best friends. Steve and I had worked closely together for a number of months, he as a corpsman and I as an Army nurse. Now he was writing to tell me that he had just been diagnosed with Hodgkin disease. Little did I know that Steve would soon become my teacher, guide, and beacon of hope in the battle against cancer.


I consulted a 1967 nursing textbook and found that, after diagnosis, a person with the type of blood dyscrasia I had was expected to live three to five years. 1 I anxiously went to visit Steve. On that visit, I learned


* there was now effective treatment for this specific type of cancer.

FIGURE. Susan Leigh,... - Click to enlarge in new windowFIGURE. Susan Leigh, founding member of the National Coalition for Cancer Survivorship, left, with Carol P. Curtiss and Pamela J. Haylock at the symposium in July 2005.

* although the treatment killed cancer cells, it also destroyed healthy ones, causing intractable nausea and vomiting, suppressing the bone marrow, and sometimes causing hair loss.


* Steve would most likely be sterile from the chemotherapy. But this was considered a small price to pay for a chance at life.




The following February, seven months after my discharge from the Army, I too was diagnosed with Hodgkin disease. I was only 24 years old. My discharge X-ray had clearly shown a large mediastinal mass and extralymphatic nodes in the left lung parenchyma, yet the report had been read as negative. This mistake delayed my diagnosis by seven months.


Now I became a patient in the Veterans Administration (VA) system. I underwent surgery, six months of chemotherapy (mechlorethamine, vincristine, procarbazine, and prednisone, a combination commonly known as MOPP), and three months of total nodal irradiation.


There was no basic training for this type of conflict. Survival was trial and error. My care focused strictly on physical survival. The rest of me seemed superfluous to most of those caring for me. Placebos worked better than the drugs that posed as antiemetics back then, and only the threat of death persuaded me to return for the next round of chemotherapy.


Oncology nursing as a specialty was barely on the radar screen at that time. Nursing care was unpredictable. Nurses often avoided me. Maybe they had a difficult time caring for me because I was one of them. Also, I was a young female in the VA, a definite anomaly in 1972.


I was fortunate to have my very own "cancer guide." Steve paved the way for me by decreasing the unknowns, and thus the fears, and by introducing the possibility of survival. This was my first experience with peer support from someone who had "been there" before me.


I also discovered the concept of survivor guilt. Both Steve and my mother, whose father had died from Hodgkin disease in the 1930s, believed that they had passed this disease on to me.



It took months for my bone marrow to recover, but it took years for my spirit to heal. There was a support network to help one survive treatment, but there were no guidelines on how to survive survival.


I soon realized that I wanted to return to nursing, to specialize in oncology and bring a personal expertise to this developing specialty. Over the years, I worked in various areas of oncology. I gave chemotherapy. I was a research nurse. I worked in cancer prevention and control. The more I learned about this new specialty, the more questions I had about the future for those of us who survived.


Unfortunately, some of my fears became realities. I have had bilateral mastectomies for treatment-related breast cancer. I received three years of immunotherapy for carcinoma in situ of the bladder. I have also experienced a host of noncancer conditions:


* premature menopause caused by ovarian failure, for which I took hormonal therapy for years-until the breast cancer was diagnosed


* early osteopenia and osteoporosis related to lack of estrogen, for which I take daily medication


* hypothyroidism, for which I take levothyroxine (Synthroid and others) daily


* pulmonary fibrosis, which sometimes makes it difficult for me to breathe easily


* atrophy of neck and upper chest muscles, which causes severe weakness and increases the risk of carotid artery disease



I consider myself one of the lucky ones, as all of these conditions are essentially manageable and a seemingly fair trade-off for my extra years of life. The above "body scan" also reveals that although many survivors appear entirely normal, many are still dealing with the effects of cancer-related therapies.


Not everyone is as fortunate as I am. There are far too many long-term survivors suffering unnecessarily and dying from delayed diagnoses. There are survivors who have lost health insurance or are financially ruined. There are others who did not have access to appropriate care, so they never had a chance at long-term survival. There are families that continue to feel the effects of cancer for years after the treatment has ended.


This narrative illustrates just one story-my story. Every survivor has a unique, compelling tale to tell. For many of us, survival is a saga of remission and rehabilitation, followed perhaps by rediagnosis and more treatment. We must learn to monitor our health in a new way and learn what is healthy and safe for our new, modified lives. And we must search our communities to find health care providers who understand the challenges of long-term survival and do not minimize or dismiss our concerns and symptoms.

FIGURE. From left, S... - Click to enlarge in new windowFIGURE. From left, Susan Leigh, Dottie Gutaj, Lillian Nail, and Debra Thaler-DeMers-nurses who are cancer survivors.


I could write volumes about my own personal anxieties over the years and the reactions of others to my concerns. They were usually not helpful reactions . . . until 1986. That's when I became a founding member of the National Coalition for Cancer Survivorship (NCCS).


An organized support network, NCCS ( has a national agenda and mission. Our many agenda items have included 2,3:


* creating a language and concept of survival that reflects the diversity of the cancer experience.


* identifying long-term survivor issues, and then raising awareness of both the positive and negative effects of survival.


* encouraging the development of systematic long-term follow-up for adults, including guidelines for continued care and for survivor clinics.


* assuring access to quality cancer care across the survival continuum, including access to rehabilitation, mental health specialists, and end-of-life care.


* retaining the rights to have affordable and portable medical insurance and freedom from discrimination in the workplace.


* promoting research to decrease adverse effects from treatments.



The collective spirit of those in NCCS helped me find my voice, gave me courage to speak out on behalf of cancer survivors, and propelled me into the arena of advocacy. I have been accused of being an overly obsessive "professional cancer survivor," to which I say, "So be it!!" We in the advocacy community are attempting to improve the quality of care, encourage the development of better therapies, endorse research to prevent cancer, and decrease the suffering of anyone, including caregivers, affected by this disease.


My passion continues to fuel my professional mission. As I wrote in Cure magazine, addressing my fellow long-term survivors: "Our time has finally come!!" 4 Survivorship and long-term survivors are now on the oncology radar screen.




1. Shafer KN, et al. Medical-surgical nursing. 4th ed. St. Louis: Mosby; 1967. [Context Link]


2. Hoffman B, National Coalition for Cancer Survivorship, editors. A cancer survivor's almanac: charting your journey. 3rd ed. Hoboken, NJ: Wiley; 2004. [Context Link]


3. Clark EJ, et al. Imperatives for quality Cancer Care: access, advocacy, action, and accountability. Silver Spring, MD: National Coalition for Cancer Survivorship; 1996. [Context Link]


4. Leigh S. Long-term cancer survivors: our time has finally come. CURE: Cancer Updates, Research and Education 2004;3(4):80. [Context Link]