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National Cancer Institute

Late Effects After Cancer

“After Treatment” a personal reflection by Cynthia Lofaso

President, Central Virginia Division National Ovarian Cancer Coalition

Three years ago my life changed forever. I joined the ranks of the almost 10 million cancer survivors. However, what I thought was going to be the end of a life threatening illness, with treatments finally behind me, turned out to be the beginning of a new and contentious relationship with my body.

Following my surgery for an ovarian germ cell tumor, I was treated with four cycles of Cisplatin, Etoposide, and Bleomycin. I have since learned that side effects from chemotherapy treatments such as these can range from mild to life threatening, and research indicates that the risk for any of these effects increases with time after treatment. I was chagrined to learn that Cisplatin is detectable in the body as late as 20 years after treatment. I have yet to learn of the number of years the other two chemicals will be floating around inside of my body; however, it is clear from studies that individuals who have been treated with Etoposide are at high risk for secondary primary cancers such as leukemia. Bleomycin poses its own risks of fibrosis of the lung.

Much of our understanding of the late effects of treatments comes from studies of childhood cancer survivors, a population whose numbers have been rapidly increasing with the evolution of more effective treatments. The three most common treatment related causes of death that have been reported in childhood cancer survivors are 1) the development of a secondary or subsequent cancer, 2) cardiac toxicity, and 3) pulmonary complications. Of great concern is the fact that death rates due to subsequent cancers and other causes increase more rapidly 15 to 25 years after diagnosis (Childhood Cancer Survivorship pgs 50-51).

Since my treatments have ended, I have experienced a number of physical problems that I now understand may be only the tip of the iceberg from the damage of the toxins that were administered into my system.

  1. Fatigue–I am not alone with my exhaustion. Research has indicted that almost 60 percent of survivors report difficulties with fatigue, which impacts every aspect of our lives.
  2. Risk of Cardiac Problems–Individuals treated with high dose chemotherapy are at high risk for long term cardiovascular problems. A cholesterol test has confirmed that I am indeed included in this high risk group as my cholesterol levels are far above normal (a residual effect of the Cisplatin). I was fortunate to discover this in a timely fashion: during a routine eye exam my optician warned me of some white spots on the back of my eyes that were indicative of high cholesterol and encouraged me to immediately have it checked. Being only 38, of average weight and engaged in regular exercise, it never would have occurred to me that this might be a problem. Now, I am facing the fact that I am at high risk for heart disease and stroke.
  3. Osteoporosi–I began hormone replacement therapy the day after my hysterectomy. After suffering from some extreme hip pain, two years following my treatments, I discovered that I was already suffering from borderline osteoporosis. It was only after numerous tests, including several bone biopsies that doctors even thought to have my bone density checked. Is this a side effect of the chemotherapy, or simply a failure of my body to synthesize the hormone properly? Nobody seems to know.

What is perhaps the most frustrating about my concerns is that not one of the specialists, nor my primary care physician, had ever indicated that I was at high risk for any of these health problems. Strange, you may think, but when you take into account the status of cancer care it is quite understandable that many health care providers, even oncologists, are not focused on long term effects of treatments or are unaware of the need for long term follow up of their patients beyond the annual check for tumor markers or some other indicator of recurrence. It is only recently that doctors have even had the “luxury” of looking at so many survivors. Twenty years ago, with a cancer diagnosis so often being fatal, the long term effects of the treatments were simply not a focus. Doctors were just trying to keep us alive. Today, however, with almost 10 million survivors, and more expected in the future, it is imperative that the need for lifelong follow up care is communicated to all health care practitioners and becomes the standard of care for cancer survivors.

As to my future, clearly there are many unanswered questions. I do know that information and communication is what will keep me and others like me as healthy as possible. In order to help make this happen, I have become an advocate and educator in my community, distributing information, doing presentations and working to raise awareness. I strive to be informed and involve myself in opportunities to provide information and support, both for the sake of my health, and for the sake of any other individual dealing with this disease and the after effects of the treatments. Information will always be my best self defense as I continue through life as a cancer survivor.

The views and opinions expressed do not necessarily state or reflect those of the United States Government and they may not be used for advertising or product endorsement purposes.